Rebekah's Page

"Daddy Come Quick! Help!"

2012-01-26T06:49:00.000-08:00

These are words, being shouted with concern/fear from the bathroom, that this single dad of two little girls dreaded to hear. Even though my girls are prepubescent and barely pubescent these words still freaked me out.

Running to the bathroom...well okay, walking and taking as much time as I can very afraid of what I am going to find...I am thinking to myself "Oh please let it be an overflowing toilet, a flood from the sink or anything else but THAT!" In the steps from the kitchen to the bathroom I'm asking myself "Do I have what I need in the house?" and "How do I calm her understandable fears?" As I take the last few steps I understand that yes, I can deal with this.

Pushing the door open I can finally breathe again when she asks me to help hang the robe hooks back over the top of the door as it had slipped off one side. Thank you God for very small but wonderfully relieving blessings! Please have a good day; I know I will because no matter what happens it has definitely started out better than it could have!!!

Wedding Invitation

2012-01-21T08:27:00.000-08:00

Many of you know that I proposed to Tia and the girls on December 26th, 2011. Since that time we have been spending a lot of time together as we start to blend our two families into one. Tia and I are learning so much about each other and loving every moment of it. The girls are getting along, well, like sisters. We could not be more blessed.

Rebekah and Sarah are desperately in need of a "mommy" to help raise them and Sydney and Katey need the same thing in a "daddy." Tia has been alone (7 years since Jeff died) a lot longer than I have but Frances' illness plays into my lonliness as well. Each of us had a wonderful life with our previous spouses are we are looking forward to having a best friend and spouse next to our side again. Every day that goes by I am excited more and more about being back to having a "normal" family. We are not sure that what we have been through will ever allow us to be "normal" but we are hoping. And yes, Tia has been informed of how scary it can be to be a part of the Adams household - and she is willing to marry me anyway!

You can read more about our story and our wedding at www.scottandtia.com and we would absolutely love for you to be there. Please feel free to leave comments in the guestbook section and RSVP if you can make it!

Enjoying Our Break - A Few Pictures

2011-12-28T08:11:00.001-08:00

Yes, we are enjoying our time at Tia's father's home in Montana. Here are a few pictures and a video (working on the video) for you to enjoy too: The beautiful Miss Tia: And me with the kiddos in the background: Sharing the path with the fawna:

Not My Plans Nor My Timing, But His.

2011-12-27T07:37:00.000-08:00

I awoke this morning in a third story bedroom of a rustic open beamed, wood everywhere home. As I opened my blinds I looked out to a beautiful layer of white snow covering the ground and the high desert pines that only somewhat blocked my view of an ice covered river. Outside my window was one small deer, casually foraging from bush to bush trying to find her breakfast in this wonderful area God created and we call Montana.

But even more beautiful than the view and the home are its occupants. Last night Tia, Sydney, Rebekah, Katey, Sarah and I arrived in the home of Tia's father, Grandpa Kim and his wife Grandma Marian. We arrived after dark but the beauty of the place, outside and in, was still evident. We had new family introductions, a lovingly prepared dinner waiting for us, and then brought in bags. The adults got to know each other while the kids played outside in the snow and throughout their temporary cabin like accommodations.

We had come to get to know more of Tia's family. But I also had another purpose. Short one 15 second phone call on the way here yesterday, I have never spoken with Grandpa Kim since I started courting Tia. I had felt remiss about starting our courtship without seeking the wisdom (and permission) of her father. When I formally asked Tia's permission to court her I promised her I would not take any further steps with her without seeking her father's permission. I had planned, after spending the week getting to know them, to ask Grandpa Kim for Tia's hand in marriage. But like many...most...all other things in our growing relationship, God had other timing in mind. After sharing most (not even all) of our story with him Grandpa Kim blurted out 'What are we waiting for, when are you going to marry this girl?'

Not shocked, but taken aback I was. And yes, I believe Tia was a bit too. After having my time schedule changed on me and getting my senses together I shared with him that this was something I wanted to talk with him about. In the middle of this Tia went upstairs to help the girls with some "emergency." After a few more minutes of conversation I knew for sure that we had Grandpa Kim's blessing. While she was still upstairs I went out to the van and brought in some more things, actually just one more thing. It was something that I had not planned on needing until after the new year, or maybe new year's eve. But again, God's timing is a bit different than mine on this whole thing.

When Tia came downstairs with the girls I asked them all over to the table where Grandma, Grandpa and I were sitting. As she sat down I dropped to one knee in front of her and said "Tia, I have spoken with our children and have their blessing. I have spoken with your father and have his blessing. I love you will all of my heart." Then, for the second time in my life (excepting for practice of course,) I uttered the words "Will you marry me?" Through tears of joy and just a bit more shock, she answered "Yes!" We then proceeded out into the snow and danced our first dance as an engaged couple on a snow covered dance ring prepared by the girls just outside the dining room window. As we held each other and danced to the music of our hearts, Grandpa and Grandma shined a "spotlight" on us while they watched from inside.

Proud doesn't even do justice to the feeling I have as I announce that on March 17th 2012, Tia Bacon and Scott Adams will become one in the eyes of God and man. We hope you will reserve the date and join us at Southwest Bible Church in Beaverton, Oregon on that glorious day.

The Power In Choosing A Name

2011-12-16T06:56:00.001-08:00

In Genesis God gave Adam the power to name the creatures of the earth as they were created. The act of naming something creates a huge tie to that something. There was (and is) great significance to that power, a significance we don't think about that often.

For those of you that don't know me that well I will share something about me. I have a thing for crock pots. I have more than a few of them. I like what they stand for and I love what they do. They are SO practical. As the "potluck season" continues on I use my crock pots A LOT.

Earlier this week our Bible Study had a pot luck dinner in lieu of our regular Wednesday night study. As I brought out one of my favorite crock pots I noticed it had a label, a name if you will. The label on it read "Scott and Frances Adams". As we were going to Tia's chuch and almost no one there knows Frances (or me by that combination of names) it didn't seem right to leave that label on it. I took that label off and left the crock pot unnamed. Much like how my life felt after Frances left, without a label that crock pot seemed empty, lonely.

This morning as I am preparing for another potluck it continued to bother me to have an unnamed crock pot. I started a couple of labels: "Scott Adams" or "Scott, Rebekah and Sarah" but those didn't seem right either. Ultimately I found a comfort, a power in the final result:

The power of naming this crock pot is not in my dominion over the item, but rather in the realization of its representation of the stages in our life. There is greif in the daily realizations that 20+ years of "Scott and Frances Adams" have come to an end. But there is also great delight in the new season called "Scott Adams and Tia Bacon." There is great delight in the gift God has given me in Tia and the girls. Seeing it on a label may be a little thing, but it is real. And it is real powerful to my heart.

A New Normal - Or Just Normal?

2011-12-10T08:54:00.000-08:00

After Frances made the decision to go Home to God this summer I found myself talking to others about our plans. We knew we would take our several week vacation and then come back home, start school and get down to the new "normal" with just the three of us. With Frances being incapacitated and bed bound for so long, so many people in and out of our lives and house, sleeping in motorhomes, camping trailers, the couch, the playroom etc. we had not had a traditionally family in so long and I never expected one again for a long time. It is often said that the Adams' don't do things in a normal way!

I had actually forgotten what it was like to have a traditionally normal family - until last night.

I came home from a long day in court; in another state even. When I walked in the door I was greeted to a chorus of "Daddy's home!" "Your Daddy's home!" and "Welcome home handsome!" I received hugs and kisses (on the cheek!) For the next several hours I watched 5 beautiful girls clean up around the house, fold laundry, act like sisters, and do some schooling/educating along the way. It was emotional. In fact writing about it now is emotional.

Last night the girls went to the playroom to watch a kiddo movie and Tia and I stayed out in the family room watching a sappy love story - which I kinda liked. The girls (all except Tia who went home as modesty and appropriateness are very important to us) all stayed the night. This morning Tia is on her way back over to have breakfast with us and get ready for Rebekah's birthday party this afternoon.

It has been so long that I actually think I had forgotten what traditionally normal feels like. We have been through so many "new normals" that I had actually forgotten how good it feels. Very very good. Whatever our "new normal" has been at any given time over the last few years I have tried to delight in the place God had put us. I have to admit that the newest "new normal," the one I just want to call normal, is one of the biggest blessings God could ever have given all of us. Praise God from whom all blessings flow.

Another News Story

2011-11-30T07:59:00.001-08:00

This appeared in the Hillsboro Argus, a local bi-weekly newspaper, yesterday. I was interviewed several weeks ago. While a good story, I am a bit disappointed in the focus. I was supposed to have been interviewed for a story about Hospice and I think the story came out a bit too focused on us. I hope the importance of Hospice really shines through:

A family's long, arduous journey
Published: Tuesday, November 29, 2011, 9:50 AM

MANNING — Scott Adams and his family have traveled a long and difficult path since 2005.

His oldest daughter, Rebekah, was born with cerebral palsy. When she was just three, she was diagnosed with Ewing’s sarcoma, an inoperable cancer in her face and neck. She spent a year in the hospital fighting for her life. And winning. Rebekah is cancer-free.

That, however, is just the beginning of the family’s journey.

In 2007, their home in Manning burned down. They rebuilt.

Then in September 2009, Scott’s wife, Frances, was diagnosed with a genetic form of amyotrophic lateral sclerosis — Lou Gehrig’s disease.

Frances’ father, Charles Mickley, died of ALS in 1999, so Scott and Frances had a good idea of what lay ahead.

“Our motto,” after all that had already affected the family, “was ‘it’s just one more thing,’” Scott said. “After almost losing your child, it’s just one more thing.”

Genetic ALS debilitates the body quickly. After a diagnosis, Scott said, a person might have 7 to 11 months to live.

Within a year of diagnosis, Frances went on life support.

“She would have died in September 2010 without a ventilator,” Scott said. She wanted to see her daughters grow.

ALS affects the nerve cells in the brain and spinal cord, causing a loss of voluntary muscle movement and control. Bedridden, Frances had control of only her eyes. She was able to communicate her wishes through a device that allowed her to “type” with her eyes.

Scott had the help of many family members, including Frances’ younger cousin who came to live with the family and help care for the girls.

Scott had palliative care services to help with long-term care issues through the couple’s insurance company. He was able to continue his work as an adoption attorney from home.

In June of 2011, Frances decided to discontinue life support. With her death imminent, Scott decided to employ the services of Hospice and Palliative Care of Washington County.

Hospice, an independent nonprofit, started in Hillsboro in 1982 as an all-volunteer organization.

Scott said he asked himself, “Is there anything more we can do to prepare the girls?”

“There were no resources for a child who is losing a parent,” he said.

Hospice care provides a wide variety of services, both for the patients and for the patient’s family. Nurses help with pain management and a range of other medical necessities of a dying person.

Hospice counselors came to the house every day or every other day, and worked with Sarah and Rebekah through play therapy on “how to preserve the memories of mommy,” Scott said. Rainbows are now reminders to the girls of their mother.

There are also counselors who work with family members.

“Anyone who was a care provider or was important to Frances,” Scott said, “could talk with Hospice counselors.”

“They gave us control over her life and her death,” Scott said. “They were supportive of her decisions on how she wanted to end her life.”

Frances died in July. After her death, Hospice counselors continued visits with the girls. After a few months, the family transitioned to long-term grief care, with Hospice counselors pre-screening counselors outside of Hospice for the family.

“We’re doing really well,” Scott said. “Better than could ever be expected. There’s loneliness, the feeling of loss. But we were prepared for those times,” he said.

Kathy Fuller is a news reporter for the Hillsboro Argus. She can be reached at kfuller@hillsboroargus.com.

Related topics: ALS, Ewing's sarcoma, palliative care

Click here for a direct link to the article.

The Illusive Art Of Laundry

2011-11-28T13:37:00.000-08:00

Ok, maybe this isn't deep, emotional or an earth-shaking announcement (which apparently based on the lack of comments and surprisingly neither was my Thanksgiving Day post) but it is on my mind nonetheless.

Somewhere around my bachelor party some 20+ years ago I was educated that they way to get around laundry duties was to ruin everything every time you got near the laundry machine. Well, I didn't actually think that was the best way to run a marriage, at least not consciously. Apparently my subconscious at least took a partial liking to it as I pretty much did just that the first few years of our marriage. I remember a particularly sexy piece of red lingerie that Frances repeatedly wore as pink and splotchy because of one of my laundry mistakes...but I digress. I really didn't seek to be removed from laundry duty but it pretty much happened that way. I can count on my fingers the number of times I did laundry before Frances got sick.

Then in 2008 we got a new washer and dryer - one of the few benefits of your house burning down. I was actually prohibited by Frances from touching them. It ranked up there close to the 10 Commandments, well okay not really but the prohibition did begin with THOU SHALT NOT...and ended with TOUCH MY LAUNDRY MACHINES! That worked fine, at least from my view point, until France got sick. Once Frances got sick and wasn't physically able to do things like laundry I had a lot more duties. But my laundry duties were for a very limited time and really I wasn't allowed to think about what I was doing, but rather I was just the arms and legs for Frances; I did as I was specifically told. As Frances' illness progressed we got more and more help in the house and (insert LONG list of wonderful women who helped here) did laundry for us up until a month after Frances died and Jenny moved out.

For many months now I have been on my own, and thought I was doing okay. In fact I thought I was doing great. I knew a little about sorting, although apparently "light (weight) and heavy" (which is the way I did it) is not as good of sorting as "light (color) and dark." And I do have to admit that I to this date am perplexed that our new machine doesn't have a "permanent press" cycle like the old one did...but again I digress. I even received great inspiration from some friends up in Washington who both husband and wife told me with good detergent and good washers you just put in everything that can fit and wash it on "normal" and all will be fine. I more than thought I was doing great, I was satisfied!

All of this until a few weeks ago when good friend Pamela was emptying the dryer for me and I got a good schooling on tights, and dresses, and certain socks, and sweaters and...and...etc. etc. etc. that all had to have a special way of doing things. In Pamela's words, "READ THE LABEL!" Admittedly I had never read a label in clothing except to note the size. And then Tia got to the point in my life where she is showing me how to do things and now I have learned that even if the label says it can be done a certain way that I should know that is not necessarily the best way to do it. It was clear to Tia that my lack of understanding of the unspoken (and unwritten) rules of laundry are the reason that my daughter's clothes don't fit, fit funny, are the wrong color and probably the cause of world war although no one has yet blamed me for that.

So why exactly am I writing this? I don't know, maybe because I am doing laundry and needed to vent (pun intended.) Maybe it's because I am confused. But most likely it's because I am frustrated. How exactly does one acquire this "sense" of knowing what to do, when to follow the label, when the label is wrong etc? Why can't this just be simple?

Up next: The Iron - You Can Use It For More Than Waxing Skis!

Thankful For Two...

2011-11-24T08:13:00.001-08:00

Or is that 4? Or 6?

As my screensaver alternates between a picture of a beautiful mother and her two beautiful little girls to a picture of another beautiful mother and her two beautiful girls I realize that my heart is doing the same thing. There is a place in my heart for two mothers and four daughters. I would not have thought it so but God has a way of making things happen that we are surprised about.

I previously wrote: "I do not know how I go about finding the right person to do that but God does, and I am trying hard to put my faith in Him. I have written a lot about what I want in that person and may post that here another time, but for now I will say that my next wife will be for another life time and will affect not just my life but the girls’ as well. I want the decision as to who that will be to be a good one and not just an emotional one. But what I do know is that finding that person with all the insurmountable hurdles will be impossible by myself. God, are you listening?"

It's time to share with you that yes indeed, God was listening. Not only was He listening but He was also smiling as He already had a plan. A plan that I can now see He has been preparing for a while. One of these days I may bless you with ALL the ways that He prepared us for this but for the introductory purposes of this post let me be brief and hit some of the highlights.

Shortly after writing the above quote I gave my needs, desires, hopes, loneliness, feelings (or whatever else you want to call them) over to God, telling Him that I was giving up trying to do anything on my own. The next day I received a letter from a very Godly man giving me words that the Holy Spirit had shared with him, words saying that it was not good for man (or me) to be alone and that I would find someone. I think it also important to share that "Go find someone to love." is one of the very last things Frances said to me before she died. A few days after receiving the letter I was in the middle of a very hectic day when God very clearly ordered me to stop and have my wedding ring cut off. It would not come off on its own and I hadn't emotionally been able to cut it off. That day I still didn't want to yet was obedient to do so against my own comfort level. God was preparing me even when I didn't want to be prepared. (Again, there is so much more depth here but these are the highlights!)

The very next day I made a phone call to Tia. I had communicated with her a few times over face book at the request of a very close friend and colleague but had not really hit it off. In fact I was calling her that evening to apologize for my rudeness in not getting back to her and to explain to her that I was not interested in any relationship with anyone at that point. God, however, had other plans as that first phone call between Tia and I lasted 7 hours. And it has just gotten better from there.

Tia was widowed 6 years ago and has two little girls, Sydney and Katelyn that are just as beautiful as Rebekah and Sarah. Each of her girls are just about 18 months older than mine and wonderfully polite, spunky and smart! Tia is a highly respected member and ministry leader in her church and in "researching" her the common descriptive phrase I hear about her is "she is one of the most Godly women I know." After spending some time with her I can echo that. They live about 20 miles from us. Tia is a Mary Kay consultant and home schools.

Only God knows where this is headed; He is being pretty strong about the leading and we are both trying to be cautious. Obviously the mere fact that I am sharing this here means something about the level of seriousness between us. We have committed to building our relationship with behavior that is public and God honoring. We are spending lots of time together doing that and are excited. I guess it can be summed up with this: When asking Sydney whether it was okay that I was taking lots of her momma's time she replied "Momma is happy when she is talking to you." And last night on my face book a friend posted "Yea! Scott's happy!!! A lot to be thankful for indeed!"

Who is Rebekah?

2011-11-22T07:00:00.001-08:00

I received this in a private message today. It touched me so much that I asked for permission to share it here:

Hi Scott,

Just a quick note to tell you a story that happened today. The kids and I were on our way to an appointment and Sierrah said out of the blue "You know what I like about Rebekkah?"

"What?" I asked.

"She is always happy, smiling and nice to everyone even though she lost her mom she is still so nice, I don't know if I would be that way." Wyatt [Sierrah's younger brother] agreed.

Just thought you should know your child inspired mine today.

Thank you Darcey. Thank you for sharing Rebekah's inspiration and providing us with a great blessing.

Post Surgery Update

2011-11-21T10:12:00.000-08:00

Forgetting that she had 6 teeth removed from inside her gums around her mouth, and the soreness and difficulties associated with that, I'd like to jump to the more important stuff. Because of the area that it was and visual concerns, a biopsy was also taken during her surgery. I received the pathology report this morning:

"Benign squamous mucosa and fibrous tissue with crushed cells consistent with chronic inflammation. No evidence of Ewing's sarcoma." [Emphasis VERY MUCH added!]

Praising God yet again for His divine protection over her and us.

Rebekah Update

2011-11-16T10:12:00.000-08:00

Chose to keep Rebekah home today. Grandma M had taken the day off expecting that Rebekah may need some help and she was right. Although it doesn't seem like Rebekah is in a lot of pain (hard to tell though as Rebekah has a pain tolerance higher than anyone I have ever known except mommy) but she is a bit tired. She's playing and then resting, cleaning up and then resting, resting and then resting. Hopefully she'll be back to 'normal' (ha ha ha) soon.

Surgery Over, Home

2011-11-15T15:06:00.001-08:00

Just about 9 hours after leaving the house we are home.

Just one pet peeve of the day - why do you tell us to get there 2 hours early and then let us sit in the waiting room for 45 minutes before even admitting us? Backed up? At 7:30? When we were the only ones there (ok - there was initially one other family there?) I just don't get it.

Rebekah was an absolute trooper. She went right into the day surgery room, directed the nurse where she wanted her IV, requested hot blankets, tell the nurse that she wanted to ride downstairs on the cot etc. Once downstairs (in pre-op) she kept asking for the "sleepy boo boo medicine doctor" to come out and put "sleepy milk in her tubes." After a bit of a wait the dentist and the anesthesiologist came into pre-op, put her out and off she went to the operating room.

Skipping forward a few hours. Doc came and got me and told me that things were a bit worse than she had hoped for and instead of taking out 1 or maybe 2 teeth they ended up needing to take out 6 from various places around her mouth. The nice thing is that they didn't fracture the jaw as they expected might happen.

After some time in the recovery room and then some more up in day treatment, we were finally released to go home. It was not without effort however as Rebekah wanted to leave but also didn't want to drink from a cup. If she wouldn't drink from a cup they were going to make sure she got a full bag of IV fluids before she could go. Finally the desire the leave won out over the obstinance of not wanting to drink and she drank enough to make the nurse happy. We were out the door in the wheel chair (making Rebekah very happy) and she slept much of the way home in the van. We are now home and EVERYBODY is tired.

The future with regard to her teeth is not looking very bright and she is basically going to loose everything she has as her baby teeth fall out. She will need full implants, bridges, etc. if she is going to have any teeth. And of course those are going to need to be changed out as she grows. Ugh.

A quick funny about the day. Rebekah started collecting things - medical things. Everyone she saw she would ask for a roll of tape, a glove, an IV band, a kleenex, etc... She ended up the day with a bio-hazard bag full of these things and upon which one of the nurses felt the need to write "DO NOT THROW AWAY" and put one of Rebekah's hospital stickers on it. I'm not sure what her impetus was, but she has lots of memories of the day that she won't remember a whole lot of because of the drugs that were given to her.

Thank you for your prayers and support and thank you for those that joined me at the hospital for our first major event without mommy. It was all very helpful and heart-felt.

Surgery Day

2011-11-15T06:27:00.000-08:00

Much has gone on over the last few weeks and there is much to share so please check back. Today is surgery day.

Rebekah and Daddy will be headed to the hospital in just a few minutes for an early morning check in, a general anesthetic and surgery. All working in her her little mouth will be the anesthesiologist, the dentist and the oral surgeon. At this point we believe the plan to be to remove two adult teeth that are dead and infected under the gums. Given Rebekah's physical state of her jaw due to radiation damage, we cannot be sure that the need won't be far greater or that her jaw won't fracture while working on it.

Basically Rebekah's jaw is brittle and her adult teeth are dead in their original spots due to the large amounts of radiation she received to kill her tumor. We knew we were going to have issues in this area and are blessed that we have been able to avoid them until now.

Please pray that today remains simple and Daddy has the ability (and those around him) to calmly get through the day.

Surgery.

2011-10-31T19:18:00.000-07:00

Well, it has been a long day. Honestly it's been a long weekend since I first started having concerns Saturday afternoon. I'm not sure I really have slept much and the emotions have torn into me.

The good news is that Rebekah needs some pretty major oral surgery. Yes, you heard me right, that is the good news. There is something wrong in our family's lives that we often find ourselves hoping for something that would be a major disaster to some others. Praying for an infection, praying for MS, etc. Obviously this is the good news because it means that the swelling we are seeing is probably not cancer. There are no guarantees, but according to the dentist the oral problems could account for the danger signs we have been seeing.

Basically all of Rebekah's adult teeth are there, still up in the gums, but have been destroyed by the radiation. As they start to move, if they start to move, they are not in line and generally not well. Rebekah had an adult molar pop through on the left side. It had no enamel on it and a large hole down the center. A large hole into her body. A large hole that carried infection into that area. We don't know why her body showed no other sign of infection (fevers, rashes, redness in the area etc.)

So yes, this molar needs to come out. She is on some pretty heavy antibiotics and we will have surgery in two weeks. Surgery is a full on hospital anesthesia. The dentist, the orthodontist, the oral surgeon, the pediatricians and the oncologists all have to consult on this with it being likely the first three will be doing the surgery. At this point the surgery is set but exactly what will be done beyond removing the offending molar is not known. Lots of smart people have to come up with a treatment plan to artificially replace what we have destroyed.

And then there is the possibility (likelihood?) that Rebekah's jaw itself won't take the work necessary to get the tooth out and will fracture - but that is for another post.

For now I am beat; emotionally and physically beat. Good night.

Rebekah Scare Update

2011-10-31T11:29:00.000-07:00

I wish that I had wonderful news to update you with, but I don't. But I also don't have too bad of news, at least not as bad as it could get.

I debated this morning as to whether to just show up on the door of the pediatrician's office and wait to be fit in, or to call them when they opened and see what they said. As they opened only 15 minutes after Sarah left on the bus, I decided to wait and used that time to get packed up and ready to go for a couple of days if necessary. I had long forgotten what it is like to walk out the door with your kiddo not know when (or if...) you would be coming home.

I couldn't make an early appointment with our normal pediatrician, but did get one with someone else in his office. Actually I have to look at this as GOD got us that particular appointment. When this doctor, that I have never met, walked in the first thing she said was "I understand. I had a little boy in the hospital the same time Rebekah was..." She looked Rebekah over pretty thoroughly and said "we need to get you in as soon as possible so you don't have to live with this limbo." If you haven't been through this you can't have any idea how special (and rare) it is to have a doc that understands this and is willing to help.

She also suggested that there is a chance (did she say "good chance" or am I just hoping she said that???) that this is a dental related infection and she asked for the name of both our dentist and our oncologist. Rather than sending us on our way and getting back to us she told us to wait while she contacted them. She tried hard to set up a dental exam this morning but the dental staff being out of the office this morning made it impossible. But we are set up for 3 this afternoon. Doc also said that if this isn't obvious she will have oncology ready to see us and get set up quickly, adding that she would do everything in her control to help that happen.

On top of this great patient advocate, our normal pediatrician, hearing Rebekah was in the office, also came in and saw her and the two docs started working together on this. Will I get charged twice? I DON'T CARE!

I am hopeful though not comfortable that Rebekah has a dental related infection as that I can emotionally deal with. But if its more than that, at least I am comfortable that we are starting with a great, understanding medical team behind us at the pediatrician.

As hard as it is for me to say this, please pray.
She asked If you haven't been through

REALLY Scared Right Now

2011-10-29T18:34:00.000-07:00

There are a lot of things that make parents scared regarding our children. But for a cancer parent there is one thing that we fear more than anything.

The girls went to Grandma's last night and today and just came home. Grandma told me Rebekah was complaining of her cheek being tender. Her cheek is indeed swollen and it looks like it did when her tumor started growing.

Obviously there are a lot of things that can give us a swollen cheek. I have looked all over inside her mouth and outside and I don't see any obvious bites, wounds, etc. That makes me REALLY scared right now...

UPDATE SUNDAY MORNING 9:00
I have spoken with Rebekah's doctor and for the first time speaking with this particular doc, his "control of the situation" was actually a bit calming to me. I am apparently a different patient than I have been. He basically said remember Occam's Razor - when you hear hoof beats think horses, not zebras.

In other words there are a lot of things that it could be that are more likely than a recurrence (there, I said the word.) He wants us to work through some things today that might help to rule some of them out. A VERY positive in his mind is that the swelling in her face is tender to the touch as generally a tumor growth would not be. Not so positive, but still not definitive is that she doesn't have a fever. We will be watching throughout the day and decide more tomorrow.

Some prayers right now would be a good thing.

Speechless...

2011-10-27T15:28:00.000-07:00

For those of you that don't know, not only am I an adoption attorney but I was also adopted. I have searched long and hard to try and find my birthparents and have had no luck. I just received a phone call that left me speechless. In fact it took me so by surprised that I had to ask the person to let me call them back. The relevant portion of the very short phone call was:

"Is this Scott? Scott my name is _____. I am doing some research and found out that my mother lived in a home for unwed mothers [the same one my birthmom lived in] and gave birth to a baby boy around [my birth date] and was forced to give him up for adoption..."

I had to end the conversation right there, getting a number to call her back. My emotions are running right now. Not sure if I am ready to call her back.

Laying It Out (The Empty Seat)

2011-10-23T08:58:00.000-07:00

This came from my journal last night. I have been keeping a journal with things that don't seem appropriate to post on facebook or here; or more often things that I am afraid for one reason or another to post in either place. This entry falls into the later category.

I will lay it out. I am fearful of posting anything along the lines of my emotions regarding dating. Fearful because there are a lot of people out there that have opinions on the subject and don't mind sharing them maybe just a bit too freely without actually having been in or fully understanding the situation. Fearful because of what someone who I might go out with might think if they read this. Fearful, most of all, of the unknown. I was relieved a bit when I wrote these things in the journal but I still feel like they are bottled up inside me, so here goes.

I have gone back to driving the van this week. It wasn’t an emotional decision but rather one brought on by taking Sarah’s class to a field trip on Friday. But it has turned out to have emotional consequences.

Thursday the girls and I went to Target to do some shopping and go out to dinner. Only having the three of us in the van doesn't quite make sense in my mind. This was the van that Frances and I bought especially for them when we were pregnant with Sarah. It is the van that we have travelled so many miles in as a family. The passenger seat seemed so empty, much like my heart. The girls filled the back seat just like they fill a big part of my heart. But that other seat, just like part of my heart, was just empty.

On Friday the van was filled with 8 people. On the way to the field trip we had 6 kiddos in the back and Sarah’s teacher in the front with me. It was very Very VERY comforting to have a full van. I thought it would be weird having someone else be in "that seat" but it wasn’t. Even though "that seat" in the van was temporarily filled, it did not fill the hole in my heart, but it did comfort me a bit. I learned something about myself that day, I learned that I really do want someone to be in "that seat;" I want someone to be in my heart.

I do not know how I go about finding the right person to do that but God does, and I am trying hard to put my faith in Him. I have written a lot about what I want in that person and may post that here another time, but for now I will say that my next wife will be for another life time and will affect not just my life but the girls’ as well. I want the decision as to who that will be to be a good one and not just an emotional one. But what I do know is that finding that person with all the insurmountable hurdles will be impossible by myself. God, are you listening?

Frances and NAFA

2011-10-10T08:43:00.001-07:00

NAFA (Northwest Adoptive Families Association) is a group that means a lot to our family. So many of my kiddos and their families are members there and we have spent a lot of time doing things with this AWESOME group. We just love them and all their families.

Their summer newsletter just came out and they did a great story on Frances. Find the Full Newsletter Here. The story about Frances is on Page 5.

Or if you can read it, here is the article itself:

Angels Rejoicing

2011-10-04T18:56:00.001-07:00

We have talked about many very personal things on the blog, but none so personal as this. We have talked about how we have heard from people that something they read here influenced their decision for Christ and have shared how multiple times we have said "Lord, if this person coming to Christ was the reason for all of this suffering then we praise You for it." As much as those have meant to us, none have meant so much as this.

As we were driving in the truck Sunday evening, 7 year old Sarah was reciting John 3:16. Her verse: "For God so loved the world that He gave his one and only Son that whoever believes in Him shall have eternal life." After her reciting it while driving home we sat in the truck in our driveway and talked about what it meant. We had a very adult conversation and I was proud of her understanding of scripture far beyond just this verse.

Fast forward 24 hours. Monday night she was working on memory verses again and again we talked about what they meant. In that she said, somewhat in passing, "like I did..." I wasn't sure I heard it right and in fact wasn't sure she knew what she was saying so I let it go.

Fast forward another 24 hours. Tonight I pulled her up on the couch with me and asked her what she meant when she said "like I did..." last night. She proceeded to share with me about sin, about how a perfect Christ died on the cross to carry our sin away from God and how asking Christ into your life means you will have God in your life forever and have forever life with God in Heaven after you die. She shared with me about talking to Jesus and asking Him into your heart. When I asked her again about what she meant when she said "I did that" she said "I asked Jesus into my life the other night, after we talked in the truck, while brushing my teeth."

Lots of things make a parent proud. I cannot imagine that anything can make a parent prouder. The Bible says angels in Heaven rejoice when a soul comes to Christ. I know that, in addition to the angels there, so is Mommy!

Alone. And Becoming More So.

2011-10-01T11:52:00.000-07:00

I am alone today. Very very alone. The girls have been off off with Grandmas since last night. It is alone times that are the hardest. Especially when other things make you feel even more alone.

I started cleaning off the kitchen table today. That is actually a much bigger job than it sounds. You see, 1/2 of the kitchen table has been Frances' pharmacy. Cleaning off the table means going through all of her drugs as well as piles and piles of paperwork that have been thrown onto that 1/2 of the table for lack of a better place to keep them.

As I touch each bottle and place it by category to be disposed of correctly, I am touching bottles that slowed the progress of her ALS, bottles that attempted to provide her with some relief from the pain, bottles that made her as comfortable as possible throughout the horrible process of dying. Now, like her, these little bottles, patches, syringes, containers that had been such a big part of our lives, will all be gone.

The more that is gone the emptier the house is. The emptier the house is the emptier I feel. Back to being alone.

Routine

2011-09-28T07:49:00.000-07:00

Rebekah has always felt comfortable with a routine, it's been a part of her "quirks." Their hospice counselor warned that routine will be important after mommy's loss, and she was right. Now Rebekah and Sarah are both thriving on routine. When their routine changes up there are emotional and behavioral issues that come right along with those changes.

The last couple of days we have had some "outs" of the routine with daddy taking Rebekah to school one morning, the ALS walk, some hiccups in the evening schedule, etc. And sure enough Rebekah's take home note book is marked with her not listening to teachers and even raising her voice to them. Unacceptable and being worked on. But these things go hand in hand.

Obviously we can't always do things exactly the same way and we do have to learn to deal with some changes to routine. But even when there is a change in the routine there needs to be as many constants as possible. It's my job as a daddy to see to that. If that is difficult to accept, so be it.

2 Months Ago

2011-09-26T07:45:00.000-07:00

Two months ago you left this earthly life which had taken so much away from you. You left for an eternal pain free life of singing, joy and being in the presence of our Glorious Lord.

You left us here happy, so happy for you. But you also left us here hurting and saddened by your loss. You left us without a mommy and without a wife and it has been hard. We are doing okay, but it has been hard.

I really hadn't thought much about the date until church yesterday when someone asked me how you were doing. I told them you had died just under two months ago and then realized it was almost exactly two months ago. It came up a couple more times throughout the day from different places.

As if to share this anniversary of sorts with me you came to me in a dream last night. We were at Aunt Nancy's house in Ohio. I had come down the stairs, through the kitchen and into the dining room; and there you were sitting at the table. I asked "are you really here?" You told me to come find out. I came to you and you stood up, held me and danced with me right there in the living room. Yes, you really were here, even if just in my dreams.

Moving Forward - What To Do?

2011-09-22T07:48:00.001-07:00

Someone told me recently on my Facebook page that I should write a book. I answered that I blog and FB as therapy. Somehow I don't think writing a book would have the same effect. I also have to admit that while I don't blog or FB for the feedback, the feedback is spectacular and many times has kept me going.

Now I am torn about where to go from here. As we move on just the three of us A LOT of new things are coming to play. A new season if you will. I wonder if blogging about the life of a single daddy is an appropriate continuation of Rebekah's Page or whether it should be its own blog. Rebekah's Page has in the past had quite a following; would those same people be interested in following where we go from here or do I need to develop a new following on a new blog? Would anyone follow a new blog? Does anyone care? (Hint - these are not meant to be rhetorical questions. Please give me your thoughts!)

Empty Room Empty Heart

2011-09-14T08:20:00.000-07:00

I carried the last item out of Frances' room this morning so that the carpet cleaner can come. As I walked through the doorway with the last box in hand an eerie feeling of emptiness swept over me. I teared up. I carried the box down the hall, set it down in the living room, and went back to the empty room.

As I walked into the empty room it was just that, an empty room. For the first time it wasn't Frances' room anymore, it was just an empty room; much like my heart isn't Frances' anymore, it's just empty. I stood there and bawled.

Memorial Service on Youtube

2011-08-31T04:18:00.000-07:00

Many have asked about the video of mommy's memorial service. I have put it up on youtube for you to see if you would like. Because of youtube limitations on length it is in multiple (7 plus 1) parts. There is a slide show that was shown at the service but it is hard to see there so I have put the slide show up separately as well.

You should be able to find all of the parts on youtube by searching for my youtube account name "adamsesq" or embedded below:

Part 1

Part 2

Part 3

Part 4

Part 5

Part 6

Part 7

Slide Show

Mommy Is With Us

2011-08-29T07:18:00.000-07:00

Sarah has always liked rainbows. She has drawn them for mommy a lot and before mommy died Sarah talked with her counselor about how rainbows reminded her of mommy. Mommy and I talked with the girls and we all decided that every time we see a rainbow we will think of mommy and know that she is with us.

Yesterday late afternoon I was sitting on the couch trying to recoup from an exhausting weekend with mommy's memorial service, church, shopping, etc. I looked up on the dinning room ceiling and this is what I saw:

I called the girls in and asked them to look up. "MOMMY!" they exclaimed. We sat holding each other and wept. To the bare eye it looked like a standard rainbow. Now as I look at the photo I see it's more than that, it's actually heart shaped. It may be a bit weird, but I could "feel" her presence as well.

I do recognize God's hand in natural things but this was more than that. As I "investigated" I realized it was far more. I traced the light back to the kitchen window and yes, there was a crystal vase in that window - a vase that has not been moved in quite some time yet we have never seen that before. "OK, seasons and sun angle change" I said to myself and I looked further. I looked to where the sun would have to be and realized the barn and a tree would be blocking the sun from that angle. Yes it was happening, but no there was not a purely natural explanation for it. I do, however, know how it happened. Thank you God. Thank you mommy.

Memorial Service Day

2011-08-27T06:58:00.000-07:00

Mommy wrote this to the girls. I think, on this day, it is for all of us:

Dear Rebekah and Sarah,

I know that this is a sad time for you. I wish I could take all your sadness and pain away, but unfortunately I can't. But I promise you that it will get better. As time goes on, you won't cry so much and you won't think about Mommy as often. That doesn't mean that you love me any less and I look forward to the day when you don't have to cry about Mommy.

You can help Daddy and each other to not feel so sad and they can help you too. Other people who love you and me will be sad too. God didn't make Mommy sick, it is Satan (who is sometimes called the Devil) who caused Mommy to be sick. Mommy chose to continue to trust in God and lean on Him for strength, comfort and hope. God is good all the time.

Mommy isn't with you where you can give me kisses or tell me about your day or read me stories. But you can look up into the sky and talk to me. I will be watching you from heaven. Mommy misses you very much and I know that you miss me too. Keep all the wonderful memories of the time we spent together and the fun times we have had. Remember that Mommy is in heaven which is beautiful place and where I get to be with God and Jesus. Mommy doesn't have any more pain and I can walk and talk and sing and dance and I don't have to be in bed all the time. I will never stop loving you! When you get really sad you can get your heart blanket that Mommy made for you and wrap it around you and think about Mommy giving you a big hug.

I enjoyed baking with you. You always enjoyed baking cookies or cakes or breads with Mommy. Do you remember the time when we made cookies for the soldier who was fighting to keep our country free? He was very thankful for the cookies and for our thoughtfulness. Sometimes you even helped bake birthday cakes.

We have had so much fun camping together! We camped by the beach, and on the mountain and in the forest and even at our house. We have camped with family and we have camped with groups including the travelers where you got to help walk the doggies, Candlelighters Family Camp where you had buddies, Camp Agape, several different church camps and nafa with all of the adopted kids.

We have gone to the zoo, omsi and the children's museum. Do you remember going to the zoo at night with Katherine and Grace and their parents when we saw all the Christmas lights and rode on the train to see even more lights? Afterwards we went to a restaurant for a warm me up snack.

Keep learning about God and Jesus and one day a long time from now it will be time for you to come to heaven to be with Jesus, God and Mommy. You can always talk to Daddy about your feelings or anything that you want to talk about. And you can talk to Jesus any time you want to and ask him anything you want or tell him what you are thinking or how you are feeling. You can look up to the sky and talk to Mommy.

I love you with all my heart,
Mommy

Please Remember Frances' Service

2011-08-22T11:46:00.000-07:00

Please remember Frances' Memorial Service this Saturday. I have a recurring nightmare of no one showing up.

We are asking everyone that knew her to write something out to put in a book to the girls about who their mommy was and what she meant to you. We will have some paper to do that at the service but it would be nice if you could think about it ahead of time and have it written out. If you can't be there, would you please be so kind as to still participate in that part.

Memorial Service, Saturday, August 27th

2011-08-17T09:43:00.000-07:00

Frances' Memorial Service is scheduled for Saturday, August 27th 2011 at 10:00 AM at Laurel Community Church, where daddy grew up and mommy and daddy where married. There will be a short coffee and tea reception afterward at the church. Please bring your memories and, if you can, something special about their mommy to leave with the girls.
For example a note or letter telling them a special story about their mommy.

Click Here for Directions To The Church

Please refrain from sending flowers that will soon die. Instead please consider contributing to Rebekah's Trust for her on going medical needs (not tax deductible) or to one of several charities (tax deductible) that Frances has chosen: FJC / The Liddy Shriver Sarcoma Initiative; The ALS Association Oregon and SW Washington Chapter; or University of Miami Advancement Division, Dr. Michael Benatar's Familial ALS Research.

Details for these organizations are below.

---

Rebekah C. Adams Irrevocable Trust, Molly E. Mickley, Trustee
3305 SE Grant Street, Portland, Oregon 97214
paypal: rebekahtrust@attorneyadams.com

The ALS Association Oregon and SW Washington Chapter
700 NE Multnomah St., Suite 870, Portland, OR 97232
www.alsa-or.org Click "Donate" along the top banner.
In Memory of Frances Adams.

University of Miami Advancement Division
Post Office Box 248073, Coral Gables, Florida 33124
https://www6.miami.edu/umgiving/giving.Html
Please include a letter indicating that the donation is in memory of Frances Adams for Dr. Michael Benatar's Familial ALS Research.

FJC / The Liddy Shriver Sarcoma Initiative
17 Bethea, Ossining, NY 10562-1620
http://sarcomahelp.org/donations.htm
Please indicated that it is for Ewing's Sarcoma research.

A Good Day, A Frustrating Day

2011-08-13T22:04:00.001-07:00

This morning we woke up, had a fun breakfast with some special "mommy debbie" pancakes (which are pancake made into letters of the girls names:)

We also did some bike riding around our circle. Daddy was able to get a bit of work done while the girls rode.

Around noon we headed to Prineville to see relatives and had a good day with cousins, aunts, uncles, etc. Folks we don't get to see too often and we love it when we do.

We were also very frustrated today. I guess the only way to put it is that nothing hurts more than people letting you down after listening to them tell you how much they care about you. All around us people are saying "if you ever need anything let us know, we want to help..." Well, honestly I don't take that to heart any more and I let it go in one ear and out the other. Why? Because of days like today. We had some serious disappointment over here with the girls not getting to go horseback riding like they were invited to do and then later uninvited. Yes, things come up but its hard breaking little girls' hearts.

But even more so because Jenelle and Blair tried to put together a work party at our house today to clean things up and give us something nice to come home to. The last few months of Frances' life took everything out of us just to take care of the inside of the house. It was announced on my facebook to all my 337 "friends" (many of whom have often uttered those words described above.) It was announced to Jenelle's 276 friends. It was emailed to all the people in the last church we have been able to call our church before mommy got so bad that we couldn't go anymore. And who showed up? ONE person besides Jenelle and Blair. Thank you TRACE! It feels awfully lonely to ask for help from over 500 people and not have more than one show up.

But now maybe you will understand and forgive me when I just plain old don't believe you when you say "If you need anything..."

08/14/11 Edited To Add: Apparently a few of you have taken my frustrations expressed here personal. The odd thing to me is that I cannot imagine how anyone who actually has helped us could think that I was talking about them. Please let me clarify. My frustrations are only with those that utter those words that have become so difficult to hear "If you need anything..." and then disappear and will never help with anything.

There are A LOT of you that have helped and the vast majority of you have never offered those words, you have just helped. You are not the source of my frustrations. In fact, it's those like you that have made an unbearable situation bearable for us. I apologize to you if you somehow felt I was talking about you.

But the others, the only thing I have to suggest is if you don't mean the offer, don't make it. Repeatedly having people turn you down after offering "anything" is far worse than no offer being made in the first place.

Going Home. Or is it?

2011-08-12T08:35:00.000-07:00

As we get closer to the end of our trip people have been asking about our plans to return to Banks. They've asked "When are you going home?" I don't know the answer for sure and I have come to the realization that I am somewhat avoiding it. Maybe a bit more than somewhat. I don't want to return and face what is there.

As I think about it I am pretty sure that we don't have a "home" anymore. The place we left is not home without mommy. It will be again, in a while, but right now I don't feel like we have a home.

By God's Grace

2011-08-07T21:53:00.000-07:00

It has been a long day, a very long day. It is now nearly 10pm and I haven't been at the computer since about 6am. Before I go check emails, facebook, etc. I want to tell you about how God worked in our lives today.

Our goal today was to go to church with friends (Cindy and Kasey Knight)about 90 minutes away. We got up with what I figured was about an hour to spare. I figured that hour would be eaten up somewhere before we got to our friends home. We were out the door, still with that hour to spare. About 30-40 minutes down the road things started to happen. Actually what started to happen was that I reached for my wallet as we were nearing the gas station and I realized it was not there. In fact it was back in the trailer. We had no money nor credit cards. We didn't have time to go back and get it and still make it on time. And worst of all, we didn't have enough fuel to make it to our friends house and back to the trailer.

It was then that I remembered the gift card pouch. A few really nice people have given us some gift cards and we had those in the truck. Looking through them I found a $25.00 card to Shell which just happened (Godincidence) to be the station that we pulled into. The $25.00 bought 6 gallons which was just enough to make it so we could finish our trip for the day. God does provide and He used some of you to do it.

We made it to Cindy and Kasey's with that same hour to spare. From there they took us on a boat ride across Lake Chelan and then a several block hike to their church. Free coffee and Kasey bought the girls each a cookie made for a nice add on to breakfast. As we were getting to Cindy and Kasey's I was concerned about paying for lunch. My concerns were short lived when I found out that their church was honoring their pastor for 30 years of service and providing a full BBQ lunch. Not potluck, but everything provided. Free lunch! God does provide and he used a church body celebrating their well loved pastor to do it.

When planning this trip, just going to church with Cindy and Kasey was going to be a huge blessing. We thought maybe a little fellowship afterward and we'd be off. But they had another set of blessings in store for us. We spent the entire afternoon getting boat rides around beautiful Lake Chelan. The girls got to go tubing behind the boat as well as ride in their small pedal paddle boat. Daddy even got to take some time on a seadoo water bike. The girls also got to swimming in the lake with their life jackets on. Daddy even took one quick intentional swim and then another not so intentional when I tried to step onto a HUGE floating tube with Rebekah in my arms and missed. Rebekah and I both went into the water (her with her life jacket on.) She kind of freaked and first but all the way home that was all she would talk about; "Daddy and me go boom in the water." We were blessed beyond all measure to have the opportunity for such a day. THANK YOU CINDY AND KASEY!

As the afternoon got close to evening, and us still having a 90 minute drive home, we decided to head out. We had snacks in the truck to hold us over until we got back to the trailer for dinner. About 1/2 way home Sarah was asleep but Rebekah was complaining about being hungry. Guess what? There was a Subway right there AND we had a Subway gift card! Two lanes over and we were down the road to Subway. As we went in Sarah said she needed to use the potty and I walked back with her to make sure it was safe. As we walked into the bathroom Sarah said "I don't feel good" and threw up - in the toilet. Had we not decided to pull off and had the gift cards to do it, that would have been all over our new truck. I praise God for providing here again. I have such a problem with throw up that Frances used some of her last words to Sarah to tell her that daddy has a problem with throw up so if either of you get sick you might have to help daddy through it.

Rebekah and I shared a sandwich, Sarah decided not to eat and we headed out and made it home with more than enough fuel to be able to load up the trailer tomorrow morning and get back to our now favorite Shell station in this area. This time with a wallet. We got the girls to bed and I spent an hour or two packing things up in the truck, outside the trailer, and just getting ready to go in the morning. All of the timings have just worked out perfect and I can only thank God for such a full blessed day and still having time for everything else.

As I close, I do want to add that church was very hard for me. It was the first time I have been to church without mommy. Every song sung and every word preached was poignant and stung and I spent most of the service crying. I really didn't expect that at all but it needed done. During the BBQ afterward was the first time that I have told any strangers at all on this trip about loosing mommy. It just felt like a safe place. Thank you God.

Apparently I'm Not A Good Mommy

2011-08-06T19:58:00.000-07:00

We had a bit of a rough day today.

The morning was great with lots of riding around the campground, playing in the play room, looking at the streams, etc. We had lunch back in the trailer and then things went down hill.

I thought I'd spend just a few minutes seeing if I could get a wiring harness out from under the truck that I wanted to use to wire in some stuff in the bed. Those few minutes turned into two hours. The girls were patient but growing weary.

About the time we should have been starting dinner we decided to try and ride down to the lodge and get in a quick game of mini golf as we hadn't played that here yet and I don't know if we will get another chance. Upon leaving the ranger shack with the clubs a large german sheppard startled Rebekah and she tripped, sliding across the concrete and scraping herself up pretty good. I did my best to love on her and we tried to play a round. We got a few holes into it and Rebekah would not stop with the "I a little mad" and tears. I was still trying to love on her and reassure her as best I could. We even tried to look at the cool blood everywhere - didn't help. We gave up on the golf early.

She cried/sniffled all the way back to the trailer and I sat her down on the picnic table and loved some more. She kept saying she was mad. I asked her if she was mad at the dog, the steps or what? She said "I mad mommy not here." What I had been attributing to her normal mad at a situation was really SAD. And of course in hind sight it makes perfect sense as everybody wants mommy when they are hurting. Rebekah even told me she didn't want me, she wanted a new mommy...

I guess I'll never make a good mommy.

Leavenworth

2011-08-06T07:00:00.000-07:00

No, not Kansas and we are not in trouble.

Yesterday we visited nearby Leavenworth, Washington. A quaint little tourist village that they have turned into a German town. I've heard about it before but have never visited there. I thought it would be nice for several reasons. One, mommy was born in Germany and two, daddy and mommy spent a lot of time together travelling there in college.

Mainly because of these last two reasons it was quite an emotional day for me. I posted on Facebook that "it finally hit me." Everywhere I turned around there was a reminder of mommy or something we did together. I couldn't walk 50 feet without crying over something. Some might say I was an emotion wreck but really I was just emotional. The hardest part was explaining to the girls why I was crying this time. If something made me tear up, explaining it to them in words made me bawl. They were pretty good about it though.

We walked through gift shop after gift shop and they behaved wonderfully. Sarah really loved the things we saw with our family crest on them but mostly they enjoyed the toys. Neither of them quite grasped the German feel of the place. For lunch we ate at a little restaurant that featured, you guessed it, German cuisine. We all shared a sausage, kraut and potato sampler platter and potato pancakes. Rebekah didn't like the spicy mustard on the sausages but did like the stone ground one. Sarah liked the potato salad and the one sausage that was "like a hot dog."

We found another little bakery that served pretzels. Every day when I would go from where I was staying to mommy's school I would stop by a sidewalk pretzel vendor. Asking for a pretzel with butter and cheese were some of the first "street words" that learned in German. The pretzels here weren't like what I remember in Germany, but they were good. We all shared one:

As I didn't want to completely confuse the girls as to which culture we were in we left the German village and did the American thing - we went shopping at Costco and Walmart. Not much but a few little odds and ends. Costco mostly because I was going through withdrawals.

I learned a couple of things today. Sarah did better learning more things today on her bike if I just let her go and didn't try and "instruct" all the time. She was more willing to try things if I wasn't leering over her. She is doing SO great and rode all of the 3/4 mile to the lodge last night. She kept looking over her should waiting for daddy and Rebekah to catch up. The other thing that I learned is that Rebekah's battery on her quad doesn't last as long as I might want when going at a constant drain - like the 3/4 mile to the lodge and back... For the first time ever I was able to ride my bike along side the kids without having to pull them in a trailer and that was pretty cool.

I expected some dirty looks from some campers as Rebekah's quad with its plastic tires can be pretty noisy on the gravel but instead got nothing but approval and a few comments about how cool it was. Rebekah even stopped to show her quad to some young kids that ran out to see it. I am surprised at how young the folks are in this campground. Most of the time you see big expensive motor homes and a lot of old people in these parks. This one has a lot of young folks and families in tents and small trailers.

Tomorrow we are going to visit some friends on Lake Chelan and actually get to take a boat to church. That sounds really fun and the girls are looking forward to it. I'm looking forward to some adult conversation!

Finally I will leave you with one of the things that made me cry the most yesterday. I saw it in the first shop we walked into and just had to go back and get it before we left. I don't know where it will go, but it will find a special place in our home:

New Campsite

2011-08-04T19:23:00.000-07:00

We have moved to the eastern side of the mountains. I don't think I have ever been over Stevens (Stephens?) Pass before today. The truck did beautifully, keeping the speed limit of 60 up the entire slope and then almost not needing the brakes at all down the other side with its built in engine breaking. Up and over that pass at 17,000 lbs and we still got 9mpg which I don't think is too bad for what we were pulling.

The biggest news is that Sarah continues to ride. Today we went from "Daddy do I have to?" to "Daddy, can I go one more time PLEASE????" I actually sat out at the end of our site and cried watching her run up and down the lane on her bike. The hardest part for me is Rebekah needing to do one thing at one speed and Sarah another.

This is going to be interesting.

Tidbits

2011-08-03T20:35:00.001-07:00

We spent most of the day today around the campground. We slept in a little bit and had pancakes and bacon and eggs for breakfast. The girls watched a few cartoons that mommy burned to disc for them long ago. I don't think they know mommy did those cartoons for them, but I do.

I spent a few hours this morning working.

We walked around the campground and walked out along the beach. The tide was low and we could walk out to some "islands" that we could see from our campsite. Sarah was afraid of walking on seaweed that had washed up on the shore. Rebekah had a hard time walking on the gravel. We spent most of the time today outside the club house. We never went in, but we played some shuffle board this morning and there was a great big grass hill out in front of it. Rebekah rode all around on her quad:

And Sarah spent the morning going up and down and up and down learning to balance her bike:
Youtube Link To Sarah Balancing

She had gotten so good at balancing that she didn't want to get off her bike at all. I had to force her back to the trailer to make some lunch. After lunch we put her pedals back on the bike and headed back to the hill. Things went down hill (pun intended) a bit and pedaling was a bit more difficult for her to master. There were a few crashes and A LOT of tears but we made it through. This evening we went for a walk after dinner and after some coaxing she brought her bike. She can ride if she wants to. Sometimes 10 feet. Sometimes 50-100 feet. Then she looses her confidence and stops. She may not be totally fluent at it but she is riding on two wheels!!!!

The girls both have the coarse cough that we have been passing around the house for a few months. "Day Time" cough medicine didn't do it last night so we made a quick trip to the closest grocery store and picked up at small $7.00 bottle of kiddo night time cough medicine. Compared to fighting with them to go to sleep last night, that $7.00 was money WELL spent. They both went out like lights tonight.

Yesterday we went down to Coupeville to see some family as well as some friends. When departing on this trip I wasn't sure we would want to spend too much time with others but we really wanted to see these folks. The girls found it to be a good divergence from just being with daddy.

God has a way of using others. I haven't been feeling very good about my abilities as a sole father. It was easy to be an okay daddy when mommy was there to pick up the slack and protect the kids from my failures. Now I'm scared. I told you the other day about the lady at the Teddy Bear Store saying something to me. Today I had a retired school teacher who we kept seeing around camp out of the blue say what a wonderful daddy I was - and thank me for it. And another lady we bumped into on the beach made a similar comment. All of these out of the blue with no reason to them at all. I mean who goes around telling a complete stranger that? But I guess God knew I needed to hear it.

Dear Mommy

2011-08-01T19:59:00.000-07:00

Dear Mommy. We miss you. Not just a little bit, but all the way to our core. When the three of us are out doing something there is a big hole where we used to be whole. It seems odd to me, but I don't think you are missing us. I don't think that is possible being surrounded by the Glory of God. I am so happy for you and so sad at the same time.

I don't know if you are looking down upon us and you already know about our day, but I feel like I should tell you anyway.

Like usual, the first night in the trailer was a bit rough going to bed, and the girls were up early this morning. While they were watching some cartoons I started breakfast outside on the electric griddle. We had bacon, bagels and daddy eggs. Sarah wanted jelly on her bagel so Rebekah had to have it too. Sarah only ate one egg but Rebekah ate two and wanted a third; I told her no.

After breakfast we took the garbage out on our way to the mini golf course here at the campground. About the time we got to the second hole I realized that, like a bad daddy, I forgot to put suntan lotion on them or make them wear their hats. I decided to let them play through. Sarah did really well on her own and Rebekah needed some help. After 18 holes I finally got Rebekah to where she would stand right over the ball and hold the club in a somewhat normal fashion. It took a lot of work and a lot of patience but both girls made it through finishing all 18 holes. Rebekah especially was SO happy each time she got the ball in the cup that she would do her little jump up and dance. We got to bring home our golf balls so the girls have a couple more treasures.

We came back to the trailer and put on suntan lotion and grabbed their hats before heading into check out LaConner, the little fishing town close to where we are staying. We drove up and down the tiny little "main street" and found a little teddy bear store which we obviously couldn't pass up. The girls each wanted a Hello Kitty doll that they found that was colored in rainbows. I almost cried right then and there and told them we might be able to come back later. We then drove about 20 miles to Walmart to get a few things that were needed for the trailer.

Being about lunch time we drove back to LaConner and found a nice little seafood resturant out over the water. We ate outside on a deck with boats all around. The girls each shared an adult fish and chips and I had an oyster sandwich. It was all very very good. The girls made friends with EVERYBODY in the resturant as well as waived at every boat that went by. They even had the people at the tables on either side of us all waiving to the boats to try and get the occupants to waive back to us. While there they each had to use the bathroom - twice. Another first for me as I let them go in to the women's restroom by themselves. The first time, when we first got there, I stood right outside the door. The second time, when we were done with our meal, I watched the door vigilantly from our table. It took them a long time and I was starting to get worried by the time they finally came out. Sarah went right to our waitress and said "Excuse me, there is no toilet paper in one of the spots. But don't worry, I got some for my sister from the next spot." I feel like they grew up a little bit doing this on their own.

After eating we walked up and down the little street, going back into the teddy bear store. From the moment the girls saw those Hello Kitty Rainbow dolls I knew they were going to have them. I couldn't hold back the tears as I asked the girls in the store why I thought they were so special. They both equated the rainbows to you and asked right away if they could sleep with them so it would be like sleeping with mommy. I had stopped crying and was doing okay until the lady at the store said "Thank you for coming back. You are a really good daddy." I don't know why she said that, but it made me cry as we walked out.

Back in the campground the girls wanted to go play on the play ground. Rebekah rode her Dora Quad and Sarah "rode" her bicycle with the pedals taken off so she can ride it like a Skoot. You should have seen her mommy, doing so well. After a short while she was even getting to where she could go 5-10 feet with her feet up. And more important, she really liked it and wanted to ride more and more and more. Neither Sarah nor Rebekah could understand why I was crying but Sarah joined me when I told her that I was sad that mommy didn't get to see her ride on two wheels but that you were so proud of her.

They had a lot of fun on the playground too:

It was sand and you know how I feel about sand. But I did okay and literally trudged through it. When we got back we had to clean sand out of everything. We even went down on the rocky beach for a short walk. While down at the beach we found a "whole" crab shell. We talked about how that crab shell was like your body after you died. Just a shell with all the good parts inside gone away.

We came back and had a delicious, although not too nutritious meal of hot dogs on the BBQ and potato chips. They seemed to really like them:

As soon as we were done, Sarah went and "rode" her bike a few more times.

We then came inside and did showers in the trailer. I did okay. No one cried and they are all clean. That is the first time that I have helped them bathe since they were tiny babies. It only took about 20-30 minutes to get both of them through, dressed and ready for bed. They were both in bed by about 7:30. The trailer is full of James and the Giant Peach playing for them to go to sleep too and here I am talking with you.

It's been rough but also good. We've now made it more than 24 hours on our own. Some times it has been rough and I may have been frustrated but I haven't lost my patience yet. We'll make it mommy, we'll make it. We love you.

Silence After The Fact

2011-07-31T20:04:00.000-07:00

Normally I start out a post with the title. So far the title hasn't come to me yet. Probably because my mind is full of a bunch of different thoughts. Maybe it will all come together, or maybe this will just be some free thought. If I can get it out at all through the tears.

Frances died 5 days ago and it seems like forever. I know that I have had several good nights sleep since then, something I had not had in several years. I also know that things have been somewhat hectic the last 5 days and I think that this is really the first time I have had any time to actually sit still and listen to the silence.

We have been cleaning out some of Frances' room and preparing for this trip. We have had a house full of wonderful people helping. I've been trying to get caught up on work so I could again take more time away. Then yesterday and today I've been more focussed on getting all the last minute things done and actually packing. I've never packed for a camping trip by myself before. I have always packed my clothes and the vehicle and trailer and Frances has taken care of the girl, the food, and everything else. I still haven't done it all by myself as Jenny, Anne and Grandma pretty much got the girls ready but I did everything else - far more than I ever have.

Then today we set out about 10:45 and drove until about 5:00 or so. We drove around the campground and picked a site. We did a quick unpack and made some dinner. Well, okay not really made dinner but warmed up some pizza in the microwave. We then went for a walk around the campground. Here is a picture of the girls over looking the sound which we can see from our site:

Sorry, I couldn't move the sun nor the waves to put the lighting together correctly.

The girls were excited to go to bed in the upper bunk in the camping trailer and that, combined with being tired from a long drive and then a pretty good walk, had them begging to go to bed at 7:30. We got them to bed. Maybe not as smooth or pretty as mommy would have, but we managed. I have to think she is looking down on us with a bit of pride for us. As they were going to sleep I set up my "office" in the back of the trailer and finally they were quiet. Now I sit here in silence with lots of time to think; and cry.

Thank you again to those that have helped the last few weeks and are staying at the house while we are gone. We know everything is in good hands and you'll have lots of vegetables from the garden that is coming on.

Everywhere I go, emails, accounts, etc. I find "scottandfrances". Our registration here at the campground (because of our membership) says "Scott and Frances Adams". I can't decide whether I really am scottandfrances or whether I am now just Scott. I feel all alone but changing to just "scott" doesn't seem right. I am still wearing my wedding ring as I can't imagine taking it off even if I could.

It seems several of you have had dreams of Frances. Dreams of Frances walking, running, laughing, mobile and talking. It's not fair as I haven't. In fact I am not sure I have dreamed at all since before Frances died. I have slept, but have not dreamt. That may be a good thing as a Firefighter/EMT doesn't always dream of the nicest of things and most of my dreams are more hauntings than they are dreams. But every now and then a nice one comes along like several weeks ago. Why can't I have the dreams you guys are? Why can't I have some feeling of my bride again?

Looking around this is a BIG trailer. It never seemed so big when the girls and Frances and I were in it. In fact there were times with all of our stuff and our beds down that we could barely walk through it. But now it seems so spacious. And so empty. The three of us just don't seem to fill it right. Maybe after this trip with the girls gets really under way it will shrink around us but for right now it seems huge.

Well, this is enough rambling for now. If you've made it this far I think maybe you are more crazy than me, if that is at all possible???

I am not sure...

2011-07-30T17:46:00.001-07:00

...what I am feeling, or if I am feeling. I have purposely kept really busy this week as the down times are what get to me.

Right after mommy died and her body was removed we also had the hospital bed and potty/shower chair taken away, leaving her room empty. An empty room somehow seemed better to me than an empty bed. As I write this I realize how empty my heart is... The girls came back into the house and the very first thing that they asked when they saw the somewhat empty room was "Can we sleep in mommy's room tonight?" They ended up changing their mind and sleeping in grandma's motorhome that first night but they have slept in mommy's room on their sleeping bags and mattresses ever since:

We are working on getting away for a while and I am not sure whether I will be blogging about our adventures as I am not sure whether we are going to have adventures, quiet time, or a little of both. All I know is we are taking some time with just the girls and I to figure out who we are as a family. Will just have to let you know.

Home

2011-07-26T12:43:00.000-07:00

12:23 PM. Frances has gone home with Jesus. Thank you for you loving emails and posts. The last thing she did before going to sleep was to read through them all and remark how many wonderful people there were out there.

Thank you

2011-07-25T00:02:00.000-07:00

I want to say thank you all for the nice things that you have said about me, whether by the blog, by email or in person. Many of you have told about memories you have of me. Some I remember quite well and others definitely sound like me. I am surprised at how many people look up to me. I feel that I am not worthy of all the praise. The praise belongs to God. I try to follow Christ's example and His teachings. I see myself as a simple woman who tries her best to love her God, her husband, her children and the rest of her family and friends. If everybody did that, what a beautiful world it would be.

Heavenly Father, thank you for all the wonderful things that you have given to me and the ways that you have shown to me. Thank you for molding me into the person that you wanted me to be. May these words that I have written be read by the people that you know need to hear it. Amen.

I am often asked "What can I do for you?"

2011-07-24T12:11:00.000-07:00

These words come from God Almighty who pressed them on my heart several times until I finally understood what I was supposed to do with them by typing them up so many could read them. It is by God's strength and mercy that I am able to write these words for you. I am a humble faithful woman. The praise and glory belongs to God.

Many people have asked me if they can do anything for me. I often suggest that they can pray for me and my family and continue to care for my family once I go to heaven. While prayer and care are very needed, it is even more important that you believe and trust in Jesus Christ as your Saviour and friend.

If you have this faith then I will be happy to greet you some day in heaven. I suggest that you search your heart and determine whether you should be doing more. I regret that I have not done more to spread the good news that Christ has died that we might be saved.

If you do not have this faith then it is very important that you attend church regularly, pray to God for His guidance and read your bible regularly so that you can learn about God and come to know him and ultimately come to accept Christ as your Saviour understanding that He took the burden for your sin as well as mine on the cross where He died. Continue then to learn even more about God and teach your children about Him. I hope to see all of you in heaven but the only way to get there is through Jesus Christ. You can come to Christ at any time; you do not have to clean yourself up first. He accepts you as you are. Once saved all God sees is that Christ has covered your sin with His own blood. Praise God!

Vehicles

2011-07-24T08:21:00.001-07:00

Very few vehicles have their own personality to me; most are just utilitarian.

A while back I posted a note on Facebook about taking a ride with Guy in our wheel chair van. He and I went for a drive and I talked to him and he listened patiently while I rambled on. It was Guy’s family has graciously sold us his van to use with Frances’ wheel chair. We’ve used it for a year and half, but it is still Guy’s van.

When we moved home to Oregon we sold Frances’ bike to her brother. But it is and always will be Frances’ bike. She road all over the east coast with me, many thousands of miles. I can’t count the memories that we have together because of riding.

Last night that bike came home. It rode in at 10:00pm and I knew the sound without getting up. It seems weird but I felt it as it drove up on our property. Looking at it out in the field without another bike around it, without our little trailer around it, without a tent around it, it seems lonely, very lonely. It seems that, like me, it is crying. What it really is, though, is waiting for a rider that will never come.

Rainbows

2011-07-22T21:45:00.001-07:00

Tonight, for the first night but not the last, I had a little girl completely unable to go to sleep. She didn't leave her bed though, her sister did. Rebekah came out to me in the family room and in a kind, mothering voice that is common from Rebekah she said "Sarah not happy..."

I went and got Sarah and asked what was wrong. "I'm sad." she said. When asked about what she replied "About mommy leaving us." She asked if she could come sit on my lap. I told her that she sure could but we'd do it in mommy's room and she could talk with mommy about what she was said. "I don't want you to go." was all that we could make out through the tears.

After a short while we were able to talk to Sarah about heaven and about all the rainbow's that she thinks are in heaven. She was able to tell us about that special rainbow that mommy will be sitting under. She was able to tell us that rainbows are a gift from God and now they will be from mommy in heaven too. I asked her if we would go looking for rainbows and she told me "You don't look for rainbows daddy, they are just there." She explained to us the drawing that she made for mommy today with a rainbow made to look like a tent, holding the words "I Love You Mommy."

Tonight we were able to share the tears and hugs with mommy. In a few more nights that won't be possible. Even though it is only days away that is very hard to imagine. When I put her back to bed Sarah asked for her own box of kleenex in her bed; I gave it to her. I think I need to get one for me too.

Hospice

2011-07-22T10:57:00.000-07:00

This week we switched to Hospice. We met with most of our team the end of last week and with the kiddo counselor, Michelle, earlier this week. They are an awesome team. As we shared in a previous post, the nurse Trisha is a nurse that treated us in the hospital when Rebekah was sick and remembered us well - like most nurse that have the fortune/unfortune? of dealing with us. She is SPECTACULAR and just having her here a couple of times this week has been great. We have also had a bath (and will have another tonight) with the new bath aide Teena. Although we miss our previous care team greatly, these gals have been great and already I can tell that bringing them on is indeed a huge blessing.

So far Michelle, the kiddo counselor, has met with girls 5 times over 4 days. They are all hitting it off very well and the girls are opening up to her well. This was a concern in the short time they have before mommy's death but is working out as good as can be. They are playing with her, talking with her, listening to her and getting a lot out of it. We too are getting a lot of comfort after watching Michelle with the girls and talking to her afterward.

The big boy and girl counselor, Melodie has also been great. Last night Melodie met with about 15 people who were either family or frequent care givers to answer questions, give a time to share, vent or ??? We spent about an hour and half together and it was good. It was hard for mommy to have this going on out in the living room while she remained in her bedroom just watching on the security camera, but watching all of life go on like that has been hard.

Yesterday morning Trish, Melodie, mommy and daddy all met and did a conference call with the doctor over seeing the end of things. Dr. Louis Libby from the Oregon Clinic is spectacular and we couldn't be blessed more. He is working well with all of us to make sure that mommy's hopes and desires for her last days are being met and that she will be able to go off to heaven peacefully next Tuesday.

Only mommy knows for certain, but the rest of us can try to imagine how hard it must be to make that decision to walk to God, knowing all the glory that is there, but at the same time knowing that this means leaving the earth and your family behind. It's okay mommy, we love you and always will. It will be tough, sad and a lot of other things, but you have prepared us well. It's okay to go. We will be okay. We love you.

What Do I Believe Heaven Is Like?

2011-07-17T12:55:00.000-07:00

Heaven is dwelling with God.

I believe that there are two heavens that are talked about in the Bible. One heaven is the new heaven and new earth that will be created after the thousand year reign. The other heaven is the heaven that exists now - an intermediate heaven. This intermediate heaven is where Jesus took the thief on the cross next to him who asked for forgiveness as well as all of the true believers since his death on the cross.

I believe it is a most beautiful place far beyond what we can imagine. And Jesus himself has prepared a place for me. I will have a new body free from pain and disability. I will be with my heavenly father and that will be wonderful. And i expect to be able to watch Scott and the girls from heaven.

I don't believe that i will become an angel as many people seem to believe. I believe that God made angels and he made people and they are two distinct groups. I will be able to see family and friends who had a saving faith and who died before me. And I may be able to see those who have gone to hell because they rejected God.

I believe that I will be able to stand in God's presence and make requests for those who are still living on earth. I will be able to sing and dance and praise God. I will be waiting for Scott and the girls and other loved ones to join me in heaven at their appointed time.

Advice.

2011-07-17T12:52:00.000-07:00

More of Frances' words, typed letter by letter chosen by her eyes on a computer screen in front of her as her last days on earth come close to an end.

A young lady asked if I had any advice to pass on. I gave her some, but after talking to her I have thought more about it. I thought you might like to hear some of it too.

When looking for a partner, find someone with the same religious beliefs as you have. Also you want to find someone who likes many of the same things that you do whether it be playing the same games, watching sports, travel wishes, etc... Make sure that your thoughts about children are similar and think about adoption as a way to build a family in addition to biological children.

Once you have married, be sure to spend time together doing the things you both enjoy. Take an interest in the other things that your spouse enjoys as that may make your bond stronger.

Women, respect your husband. To the best of your ability keep his name clean, honest, trustworthy and respected. When you are out in public, do not argue with him. When you speak about him, speak highly of him. Keep the disagreements, quarrels and frustration to yourself.

When it comes to children, think before speaking. If a child gets hurt, check out the situation to determine what needs to happen. Keep calm and the child will keep calm. Freak out and your child will freak out. Monitor a child's growth as far as the milestones. If your child is lagging behind talk to the pediatrician about it. It may be best to get some professional help for the situation.

Spend time with your children; have fun with them, teach them to enjoy life, teach them manners as well as consequences. Be consistent in your teaching and training and both parents should use the same form of training. If your child is sick they still need discipline.

Be involved in your children's school life. You can be a classroom helper, or check in with their teachers and make sure that your children are doing well in school. Make sure they get any homework completed and help them if necessary but don't do it for them.

As much as possible keep your children with you, especially from birth to kindergarten. If one of you can stay at home or work from home while caring for your children that is great. Find some family, friends or babysitters who you feel good about leaving your children with and spend some time with just your spouse.

Treasure the time you have with family and friends because you never know when tragedy might happen. Live each day searching for little or even big blessings. When someone lets you down give them the benefit of the doubt and don't just assume the worst.

Those are some of my thoughts. I hope that some of them may help some of you.

An Open Mic.

2011-07-15T07:45:00.001-07:00

Not too many people have the opportunity to plan their own memorial service. And even fewer actually do so.

Frances and I are talking about her memorial service. I have asked her to plan it. This is odd but it will be very comforting to know that it was exactly what she wanted. At this point all we know (or think we know) is that we believe it will be at the church and with the pastor where (and by whom) we got married 20 years ago, Laurel Community Church outside Hillsboro, Oregon. We believe it will be August 27th 2011 at 10:00am. All are invited.

What I do know is that we will have a time for sharing. BUT - please don't wait until then to tell others what Frances means to you. Right now you have a very rare opportunity to share what Frances means to you WITH FRANCES. So many times I think, while listening at a memorial service, "I wonder did these people ever tell the deceased these things?" Now is your chance. PLEASE tell Frances what she means to you while she can still appreciate it.

The mic is open:

Memories, Dreams or ???

2011-07-14T11:48:00.000-07:00

Last night I woke up in the middle of the night. I didn't want to, but I did. I wanted to immediately go back to sleep, back to the dream I was having, but I couldn't.

Frances has been wheelchair bound since last year. She has been bed bound since before January of this year. Her body hurts to be touched, to be moved. She cannot move anything but her eyes and a bit of her chin. Neither can she talk. No one has heard her voice since the she was put on a ventilator last September.

But last night I heard her voice. Last night I felt her touch. It was more than a dream and it was more than a memory, it was real. At least it was real to me. We were playing, touching and sharing. We were intimate in a way that we haven't been able to be for what seems like forever. For a brief period of time I had my wife back and then something had to wake me up and ruin it.

At least for a few more days we still spend time together and we still share. But it is not the same. I miss you honey. I love you. I know that all too soon I am going to miss you even more. But one thing is for certain, there is no way that I can love you any more.

Time is spinning down...

2011-07-14T11:30:00.001-07:00

We met with a couple of workers from the local hospice team earlier this week. The choice to at least meet with them was made for us by a couple of our doctors who just assumed that we would want a referral to hospice. We have not been fond of doctors (or anyone else for that matter) making decisions about our care without consulting us and I think that is something that everyone in the medical system needs to work on. The patient is not just an inanimate object there for everyone to work on - the patient needs to be involved. Anyway...

We have been struggling with the fact that we love our current care team, especially our nurse and bath aide, and we will loose them if we go on hospice. The decision is made even more difficult in that our current care team has the skills and willingness to see us through to the end. The question really becomes does hospice have something to offer that justifies a change in team?

The hospice nurse that would be taking care of us is a nurse that took care of Rebekah 6 years ago when Rebekah was fighting cancer. She knows our family and she knows how strong of advocates we are. Not all providers are comfortable with that. And, like this nurse, most that have us as patients never forget us. In this case this nurse and we think the same way. Assuming we do switch she will be good. We received even more conformation about her when our current nurse told us today that he hired her when he worked for hospice and he is comfortable turning over Frances' care to her where he wouldn't be just anybody.

The key parts of hospice for us, besides the nurse, our the counselors. Our current team has a counselor but she has not really been involved that much. Not because she wasn't willing but more because she didn't push and we didn't ask. The hospice counselors on the other hand are more pushy and more focused on what we need right now; we like that. There are also separate counselors for the kids as for the adults.

We will only be with them a short time but switching is a decision that both Frances and I think is appropriate. It's just one of many decisions we have to make right now.

Telling the Girls

2011-07-13T08:25:00.000-07:00

About a week after telling daddy and other family members, daddy and the girls came into mommy's room this last Sunday morning in order to share that mommy is dying with the girls for the first time. While there is lots to say about that morning, here are the words mommy "read" to the girls:

Rebekah and Sarah, mommy and daddy want to talk to you about some really big things. You have seen that mommy has lost her ability to do much of anything any more. Mommy has a disease called A L S. This disease has no cure which means that the doctors can't make it go away. The doctors can make some of the problems not be so bad. This is not a disease that you can get from me like a cold or cough. This is not your fault. You didn't do anything wrong to make this happen.

I love you both so much!

Mommy has been having more and more trouble with different things and I have been talking to God about it and how tired and hurting mommy is. He agrees with me that it is almost time for me to come to heaven with him and all the glory. This will mean that my body will die and i won't be here anymore. We have had a lot of good memories and you can treasure them in your heart. You can look up into the sky and talk to me and tell me about the things that are going on in your life.

Mommy is sad that she isn't able to stay here with you and daddy, but I will watch over you from heaven. It is okay to be sad for a little while but remember that mommy is in heaven without pain and able to walk again. Daddy and grandparents and aunts and uncles will be sad too. I want you to learn all that you can about Jesus and God and to love them and to want to follow their ways. Then someday a long time from now God will tell you that it is time for you to come to heaven and be with Jesus and me.

Sharing My Decision With Family

2011-07-12T09:02:00.000-07:00

In trying to get the blog family caught up with our happenings we are condensing the last few weeks into a couple of days. After making her decision, mommy's next step was to tell daddy and others. Here is what she shared just before her birthday over the holiday weekend.

Here are my thoughts about death plans. I really don't like thinking about it or talking about it but have been thinking about it a lot lately. I am in a strange place: being on life support I can basically choose when to die. Physically it is getting harder and harder. Emotionally, it is getting harder and harder. I know that when my spirit leaves this world, that i will go to heaven free from pain and most importantly be with my lord and Savior.

My thought is that we remove life support sometime before the end of July. That morning i want the girls to each sit on my lap and hug them and tell them that it is time for mommy to go to heaven. I don't know if it's a good idea for them to see my body while i am dying or after. We can talk about this if you have other thoughts. After the girls have said their goodbyes then i want some time with just you. I think that you should have someone there with you for the first few hours while you are making the arrangements and until my body has been taken away. Scott, i really want you there by my side and holding my hand. I know that it will be tough on you and i want you to know that it is really important to me.

There are several reasons that I picked that time frame. First it gives the girls time to mourn before going back to school. Second it isn't super close to any immediate family member's birthday or our anniversary. I think it makes a good time for two girls, a mother and a mother-in-law and three nephews to mourn and hopefully by the time school starts they will be able to start school without constant tears and sadness. I know that for you especially and for many others there is no good time. I wish that i could find a better time, but there is no day that would be any better.

Thoughts, thoughts and more thoughts...

2011-07-10T10:36:00.001-07:00

We have been absent from the blog. Absent because it was hard to share what we were feeling. Absent because we have not known what or how to share. Over the next few days we will try and catch you up. And probably, though no promises, bring you on the last steps of this journey with us. Right now we will jump back about a week. As Frances was coming to terms with her thoughts, she wrote the following around the end of June. As you read this, keep in mind that she writes with a computer controlled by her eyes, clicking on each letter individually by blinking. A LOT of thought and time went into this. Hopefully it will help you understand how she came to this decision. Hopefully it will help you:

I spend a lot of time thinking about my life and my death. I am in a weird place. The only reason that I am alive is because of life support machines. I am secure in my faith. There was a time in college when I accepted Christ's death on the cross and the blood he shed as an atonement for my sin and I asked the Holy Spirit into my heart to work within me to guide me in the ways of God. I know that when my earthly body dies, I will be with Jesus and that will be in heaven. I can in effect choose when I want this body to die and get a new pain free body in heaven. But that is a difficult choice to make. There is a kind of constant turmoil in my heart and in my mind. When have I given my family enough of me? When have I endured enough pain? When is my job here on earth finished? What else do I need to do? What other life do I need to touch? When is the time that Jesus is calling me home?

I grieve over the milestones and such that the girls will not have Mommy with them. I wonder who will take my place when they get married, since no one is supposed to be seated after the mother of the bride has been seated and who will determine when to stand and when to sit since the people follow the mother of the bride. I wonder if I have passed this nasty disease's gene to either of my girls. And if so will there be a cure before they are diagnosed with it. And will they choose to be tested for the gene mutation before deciding to have children of their own.

Often it seems that the girls only come in to see me when they are told to and the adults only when they have to. Meanwhile the world and in many ways my family continues to go on with their lives. How much am I holding them back by continuing to live? At what point am I being a disservice?

So often I am left to my own thoughts and so often my eyes well up with tears and I can do nothing about it on my own.

Some of you may be wondering how I can be so sure. Let me tell you. I believe in the Bible and I see it as truth, I see it as applicable today and for many tomorrows.

"Whoever believes in the Son has eternal life, but whoever rejects the Son will not see life, for God's wrath remains on him." John 3:36 (NIV) I do believe in Jesus Christ, God's son, therefore I will have eternal life.

"Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house there are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." John 14:1-3 (NIV) Jesus has promised that he is making a place for me in heaven. What a wonderful thing to contemplate!

"Yet to all who received him, to those who believed in his name, he gave the right to be children of God - children born not of natural descent, nor of human decision or a husband's will, but born of God." John 1:12-13 (NIV) God is my father, but he does not take the place of my earthly father and they can both be called Daddy. Wow!

"Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5-6 (NIV) When I trust in Jesus he will show me which way to go. There have been many times that he has guided me and at least once save my life. Quite a few years ago when we lived in Ohio, we took a trip to Watkins Glen, New York on our motorcycles for a rally. It was a long drive mostly on freeways and the last thirty miles or so on twisty backroads. Scott liked to take the twisty roads a little faster than I, so would be a little ahead of me. As I was driving through the corners, I started to feel that something was wrong with the shock. I might have figured that we could look at it when we got to camp where we knew there would be a repair shop, but i could tell that God was telling me that I needed to stop quickly to see what the problem was. So I told Scott that something was wrong and I needed to stop and check it out. He found a nice gravel lot and stopped and in a few minutes I pulled up next to him and turned the bike off. As soon as I got off the bike and took weight off the bike the bike fell onto the back wheel and the shock fell to the ground. The eye bolts were still connected to the bike but the main part of the shock was sheered off at both ends. Had I not stopped, it could have come out and probably caused me to crash and injured me or killed me. I thank God for his guidance.

"This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. This is love: not that we loved him, but that he loved us and sent his Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another." 1 John 4:9-11 (NIV) God loved me well before I was even born. I try to follow Christ's example by loving those around me. I am not perfect and do not always do the things I am supposed to do. Most importantly Christ took all of my sins on himself when he died on the cross. He paid the penalty for my sins. There is no greater love than that.

You may find this amazing; God loves you no matter how many sins you have committed or how long you have turned your back on him or how unworthy you feel. If you believe in Christ and the sacrifice he made on the cross for you and for me, then you can ask Jesus to be with you and ask him to forgive you for your sins and thank him for paying the price for your sins and ask the Holy Spirit to come into your heart to guide you for the rest of your life.

Here is a simple prayer that you may use. "Dear Heavenly Father, I believe in your Son Jesus Christ. I am thankful for him having paid the price for my sins on the cross. Please send the Holy Spirit to dwell in my heart to guide me. I love you God. Amen" If you have said that prayer, the best way to get to know God is by reading his word, the Bible (I would start with Matthew), and attending a church regularly. Tell any Christian friends about your commitment to God and let them be excited with you. May you find peace from your Heavenly Father and joy for a lifetime of learning about God and his promises.

If this has made a difference in your life, we would love to hear about it! Following are some additional verses that are meaningful to me.

Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new. 2 Corinthians 5:17 (NIV)

Whoever believes in the Son has eternal life, but whoever rejects the Son will not see life, for God's wrath remains on him. John 3:36 (NIV)

Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and thieves do not break in and steal. For where your treasure is, there your heart will be also. Matthew 6:19-21 (NIV)

Now it is God who makes both us and you stand firm in Christ. He anointed us, set his seal of ownership on us, and put his Spirit in us as a deposit, guaranteeing what is to come. 2 Corinthians 1:21-22 (NIV)

Let us not become weary in doing good, for at the proper time we will reap a harvest, if we do not give up. Galatians 6:9 (NIV)

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 (NIV)

Do not judge, and you will not be judged. Do not condemn, and you will not be condemned. Forgive, and you will be forgiven. Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you. Luke 6:37-38 (NIV)

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7 (NIV)

3 Christian Men

2011-06-28T14:53:00.000-07:00

There were these three Christian men that met together every Sunday for breakfast before church. Today 1 was there on time and 2 was late. 3 never showed.

When 1 asked 2 why he was late, 2 replied "I was calling my friends in the next town over, the ones whose homes are flooded to tell them if they need anything to call me..."

Not to be outdone, 1 said "Well I came here this morning hoping we would spend our breakfast together praying for them."

And then they started complaining about 3 not being there, discounting his "Chrstianity" and all for missing their pious time together. They decided to call him on his cell and give him a what for. When 3 answered he told them that he couldn't make it to breakfast because he had taken his boat to the next town over and was helping people get out of their flooded homes...

Are you a 1, 2 or 3?

Happy Fathers Day

2011-06-19T00:24:00.000-07:00

Happy Fathers day to my husband and the father of my daughters. You are an incredible father and husband. The last few years have been difficult ones in many ways, but most of all we have relied on God for all our needs and worked through each day together. We have made it through each issue and each delight. We have learned alot along the way. We know that children and family are precious and we should be thankful for them. We never can tell how long any of us have on this earth. We have learned together that possessions are nothing in comparison to the life of a loved one. We have learned to rely on each other and on God.

I know that this last year has been especially hard on you, Scott. This disease has taken so much from me and in turn from you. We don't want it to be this way, but this is where we are. Once again we have to take things one at time. You have had to learn to do things that I used to do and sometimes fumble through it. You have had to become mommy and daddy and my caregiver. We thank God for sending Jenny to us. She has been an absolute godsend.

I love you for all that you are, for caring for me and our household, for teaching our girls so they can become beautiful young ladies who love God, and for being you. Drive safely as you take the girls to camp and enjoy the time that you have with the girls and then have a safe drive home. I love you with all my heart.

Happy Fathers day to my loving husband and to all the fathers who read this.

"What the hell am I supposed to say to that?"

2011-05-16T09:32:00.000-07:00

That is the question that 6 year old Alex's mommy asked herself when her little boy, fighting cancer for the second time, told her "Mommy, I'm going to do my best not to die."

Coming from a six year old these are heavy words. These are the things that cancer families are forced to deal with. Please read more about Alex at his blog.

Alex and his family are good friends of ours and our hearts too are pained at what they are going through. Please keep them in your thoughts and prayers.

Mother's Day

2011-05-08T09:42:00.000-07:00

It's amazing how many emotions a hallmark holiday can inspire. It's also amazing how much money we can guilted into spending just to prove something, but that's for another time.

In our home lies a spectacular mommy, the mother of my children. This morning her little girls and I came to her room to present her with mother's day goodies. The girls made some paper flowers with their own pictures as part of the flower to put on mommy's wall. They had mother's day cards for her as did I, so blessed that she is the mother of my children. It is a different situation though, having to hold the cards and gifts in front of her face at just the right level so she can see them, being unable to move anything but her eyes. It is different for her not being able to pick up and hold her children, nor able to wipe her own tears of joy that came to her eyes when reading her cards and listening to her children sing to her. I love my wife, the blessed mother of our children.

In our home today we also have the woman who gave birth to mommy and raised her to be the spectacular mother that she is. As we know, a mother's work is never done yet most mothers don't face taking care of their 41 year old daughter, giving her medicines, feeding her, suctioning out her mouth and throat, wiping her tears, etc. Yet watching her be here and do it every chance she gets shows me very clearly why my girls' mommy has become the wonderful woman and mother that she is. It is a beautiful sight to see in such a difficult situation.

Of course my own mothers are present on my mind too. I have the different (not unique but not the most common) situation of having two mothers.

My mommy is the one who brought me into her home and heart when I was days old. She had the biggest hand in raising me, for good or bad, to be the man that I have become. She took care of us at home and she worked outside the home to give us lots of extras. She gave us a love for music as well as love for our family and others. She instilled in us the value of good grades and made it possible for us to have the best education we desired. My little girls delight in the time that they get to spend with her whenever they can.

And then there is my birthmother, the woman who gave me life, making what had to be one of the most difficult and unselfish choices in her life, the choice to place me with other parents. Other parents who she felt could give me the things she wanted me to have and knew that she couldn't. I don't know this mother but there remains a special place in my heart for her. I don't know her. I don't have the opportunity to let her know what I think or feel about her. I don't get to tell her that she made the choice to place me in the hands of other women in my life and because of her choices, I have turned out more or less okay. I do hope, somehow, someway that these things can be made known to her. If you are my birthmom, thank you. If you are anyone else's birthmom, thank you.

Whether it be my girls' mommy, her mommy, my mommy or my birthmom, this hallmark holiday gives the chance not just to get you a card but also the impetus to sit and think, to let all the emotions swell, and to say "Happy Mother's Day."

Pray For Alex

2011-04-30T10:38:00.001-07:00

Our world was rocked this morning. But not nearly so as Alex's family Alex's cancer has returned in the form of leukemia. Please pray for him and his family as this hits very hard.

Alex is my 6 year old Sarah's "husband." They declared to us several years ago that they got married and there are posts about their honeymoon to Sacramento previously on the blog here. They are also one of the few families that we have unlimited trust with our kiddos. Last fall when Frances and I couldn't go to Candlelighter's Family Camp we sent our kidds and our van with their family. They mean a lot to us.

More Hospital Detail

2011-04-25T08:05:00.000-07:00

I am sorry Saturday's post was so curt. It is hard to type an update on the phone while dealing with all of the happenings in the Emergency Department. So here's the details.

Last Thursday the home health nurse came to change Frances' catheter tube. Unlike most short term catheters, Frances' goes into her bladder through an incision in her belly instead of up through her private parts. It goes through a hole in the belly and then through a hole in the bladder and then seals inside with a little balloon. On Thursday the nurse put in the wrong tube, one that was too small.

On Friday we checked with the docs about the wrong tube and they suggested, even requested, that the wrong tube be replaced with the right size one. So on Friday afternoon (which should have been a bad sign all by itself) the nurse came back about 4:30 to replace it. Once she removed the smaller one she couldn't get the larger one back in. Then she couldn't get the smaller one back in. She tried multiple times over several hours. During that time the lack of a catheter tube was presenting problems for us being wet everywhere.

After several hours of trying, talking with the doctors, her supervisors, etc. it was determined that we needed to try a different type, one with a firmer tip that might "push through" whatever the obstruction was. It was also past the nurses shift and she was trying to leave without any firm plans as to when the next nurse would be here to try and that was extremely upsetting to us. Finally a new nurse and a supervisor nurse were here and tried for several hours. When that didn't work we had to call for an ambulance.

Metro West 70 came with some paramedics that I didn't know but we got along great and they did a great job of getting us to the hospital smoothly and comfortably. We stayed in the Emergency Department for several hours while they determined what to do with us. Ultimately we were admitted to the ICU. Although Frances was stable there are very few areas in the hospital that can deal with a ventilator dependent patient and the other was full so ICU it was.

Upon being admitted to the ICU I had to fight very hard to stay by Frances' side. She cannot communicate without her computer (which we didn't have with us at that time) and I wasn't going to let them just "do their stuff" to her without my oversight and control. I know it was difficult for the staff to accept but it was going to happen that way no matter how much of a fit I had to raise. It's called being an advocate for your loved ones and you HAVE to do it in the hospital.

Once we were in, an ICU nurse got Frances a regular catheter inserted and she could finally, safely, relieve the pressure in her bladder. They apparently very recently had a patient die from a bladder exploding so they were very concerned about Frances. Once the catheter was in lots of pee came out which was very good.

We were finally getting settled down about the time for our 7am shift change. Our day nurse was Colin and he was awesome and we had a fairly non exciting morning. If you can call something going on every 30 minutes or so non exciting. We were originally scheduled for surgery in the Operating Room at 1:00pm and that slipped several times to 3:00pm. She was in and out in 15 minutes of surgery (about an hour over all out of the room) and woke up a bit later back in ICU. With some pushing and some help from a great Respiratory Therapist we were discharged about 7:30pm and riding in Metro West 68 (I think) back home, finally "comfortable" back in our own bed about 9:00pm.

I didn't sleep for about 44 hours or so and Jenny didn't either for most of that. Joe came and stayed with Frances overnight and we (Grandma and I) just sat at home alone for Easter while the girls were off at Grandparents and Jenny off with other family. Now here we are, Monday morning and it all seems like a blur.

In The Hospital

2011-04-23T03:17:00.000-07:00

After a rough afternoon and evening frances was taken via ambulance to the emergency department and we are now waiting for an admit to ICU or CCU.

Ok. We are in the ICU. I hate having to fight with nurses just to get her care. 24 hrs since I've slept now and am tired. Don't know when surgery will be.

"They are bumps, not boobs..."

2011-04-05T16:26:00.000-07:00

Backing up a bit. There are a few things that I don't think I am ready for, and taking over the mommy role in the area of maturing ladies is one of them. Weeks ago Rebekah started showing "bumps." Ok, truth be told is was probably months ago but I have been blind to them, like an Ostrich with his head in the sand I am sure. Weeks ago "things" became prevalent enough that we needed to do something.

Back then I posted a small post on my face book whining about it and seeking advice. I got some great advice then but was able to put it out of my mind when we found some "bras" in the "to grow into" bin of clothes. It took a lot of training (pardon the pun) to get Rebekah to understand that the fact that she was wearing a bra was not something she needed to share with every stranger she met. She was excited about them and has worn them without ceasing. The couple we found in the bin have now gotten too small and we are not comfortable in them anymore. I suppose I should say Rebekah is not comfortable any more as I never was comfortable with these happenings. The need to do something else was, um, apparent.

Last night I again sought advice from my face book friends on where and how a daddy can go get a bra for his physically maturing (but mentally holding strong at 3-5yrs)little girl. I got some really awesome advice about going to Nordstroms or Macys to be properly "fitted." I was told that the ladies there will make it a great experience and if we go to Nordstroms there is even a great place to go get spectacular deserts when we are done, really making it "an event." I am pretty sure that at least daddy doesn't need deserts for this to be "an event!"

What I came to realize from all of the posts there is that I was asking for the wrong thing. "Fitted" seems to imply cup sizes and all of that. We (and I do me WE here) don't need that, at least not yet. What we really need is a training bra, a sports bra, a camisole or the like. After all, as I posted there, they are bumps, not boobs. Apparently this made things a bit easier and relief was upon me when I realized that we could just go to Fred Meyer and easily... pick something up. Today was another hospital day with Rebekah so she and I went to the hospital, out to lunch, and then to Fred Meyer.

After the realization that we didn't really need a bra and all of the associated "fitting" I was ready for this. It would be no big deal. Just like buying a pair of socks. And if I kept telling myself these things I would be okay, right? Actually I was okay - right up until we walked into the clothing department. Then it hit me, like a brick wall. I literally stopped and felt my heart beat increasing. I forced myself to walk forward but it was like I was walking through a pool of water. I know it sounds stupid, but it was weird; it caught me by surprise.

Walking down the aisle Rebekah spotted the adult women's bras right away. She hollered out "BRAS!!!!!!!" and took off running as best as her little body can run. I trudged along behind her as fast as my body would allow me. We looked around a bit and it was clear that we were not in the right section, but we were close. With the help of a matronly store clerk we found the children's section. There were a lot of kiddo bras (with cups) there and we easily avoided them and focused in on the sports bra type that she has been wearing. The large was obviously too large and we couldn't tell between the small and the medium, although the small seemed to me like what she had grown out of. We took a small and a medium into the dressing room and found out the medium was fine. I am actually surprised that Rebekah didn't ask me if she could wear the one she tried on. They were on sale buy one (two pack) get the next 1/2 off. At least now we were talking something I could relate to.

Rebekah put them into her basket and proudly, though silently thank Heavens, carried them around the store while we did our other shopping. She was kind enough to clarify to the teenage male clerk that these were not for daddy by telling him "my bras, my bras!" She got them in her own bag and walked back to the car full of excitement. I am not sure what happened as we got home as there were women in the house to deal with that (thank you Jenny and Aunt Molly) and I could quickly escape out to the barn to help Blair change some tires in the mud, or something more manly.

Yes, I know this probably should have been a posting more about Rebekah and less about daddy, but to tell the truth, Rebekah wasn't affected by this and daddy was...just a little bit.

Need Help This Sunday Please

2011-03-30T08:06:00.000-07:00

We need someone to hangout with us Sunday from 8am until 8:30pm so Jenny can have her day off. Hangout, relax, do some homework, watch some TV or ??? Basically we need a second person in case Frances needs something that I can't do by myself. You don't have to be in charge of anything and don't need any special training! We used up all of our regular back up help over spring break and I'm out of options right now.

Can you help all or part, PLEASE???

A Series of Lasts...continued...

2011-03-29T13:49:00.001-07:00

continued again...

Yesterday daddy and Rebekah went to the eye doctor. As a result of the radiation Rebekah has had one of her lenses and the guts of one eye replaced with plastic. As plastic doesn't grow or change shape over time there was lots of speculation as to what kind of surgeries the future would hold for her in making this eye continue to see.

Almost miraculous Rebekah's prescription has not changed significantly enough to even require new glasses. The doc wrote us a new prescription but stated that we probably didn't need to bother filling it until/unless she needed new glasses. She continues to see between 20/30 and 20/40 out of that eye uncorrected. Quite a difference from the "likely to be blind" that we were "promised" 6 years go.

Rebekah sat through all the testing so well. She listed to instructions and even more importantly she followed them all. When she was done she got a cookie from the cookie jar the doc keeps and she was a very happy little girl. Afterward she and daddy (and a friend of daddy's) went out to eat at Red Robin as her special treat. Such a big girl she is becoming. Our big miracle girl.

A Series of Lasts...continued...

2011-03-21T15:55:00.000-07:00

Rebekah is continuing with her 5 year check ups. Today was hearing, tomorrow endocrinology.

When we went into treatment and developed a radiation/chemotherpay plan they had just about assured us Rebekah would be deaf in her left ear and very possibly in both. Todays testing revealed some drastically different results.

Her ear drum rebound test was a little bit dampened on the left side but her hearing tested within normal ranges almost everywhere. Her left ear had one frequency range (8300-10000hz) that she was just below normal limits but almost there. Over all her hearing is "Fine."

Daddy sat in the room with her, trying to be quiet and non-distracting while the ear plugs where in her ears and she was listening to the instructions from the audiologist. Daddy didn't hear them, but apparently they were something like "listen for the birdies and tell me when you hearing the birdies." All that daddy heard in this very quiet room was his little girl sitting in the middle in an adult chair like a big girl saying "I hear it." "I hear it." "I hear it." Each and every one of those "I hear it"s made daddy cry.

When done with the testing Rebekah went over to see the doctor. She sat perfectly still through both an intern and a medical student examining her and then the doctor himself. The doctor explained to daddy that there was a piece of wax stuck to her left ear drum that needs to come out either by softening with drops or by plucking it off now - but it might hurt if we try now. Knowing Rebekah's high tolerance for pain daddy suggested going after it now and he did with barely even a flinch from Rebekah. Guess we now have a reason that her left ear drum might not have been as responsive?!?!?

All in all Rebekah did SO good, making daddy so proud. And those little "I hear it"s will stick with him forever.

Goodbye Gage

2011-03-11T12:23:00.001-08:00

6 years ago today there were two little carefree kiddos playing the games that 3 year olds play and learning the things that 3 year olds learn. The world was so new to them and they were just beginning to take it all in.

Within a matter of a few months both of them were attacked with the exact same horrid nasty disease we call cancer; ewings sarcoma to be exact. From that point on both of their families have been through hell on earth. Radiation, chemo, lives shattered, brought back together and then shattered again. Many people told their families that it just wasn't right for kiddos to have to suffer through all of this - and those people were correct.

Yesterday one of those little ones, Rebekah, was declared to be cured and cancer free. Today, the family and friends of the other join together in his memorial service. We don't know why. But what we do know is that IT JUST ISN'T RIGHT.

Gage's Blog and Memorial Service Info

cANCER FREE

2011-03-10T13:06:00.000-08:00

Yes, you read that right. 769 posts, and close to a quarter of a million visitors later, we can now happily say something that we honestly were not sure we would ever be able to say.

REBEKAH IS OFFICIALLY cANCER FREE.

5 years after our last treatment with no apparent signs of cancer means, according to the doctor we spoke with today, that Rebekah has been cured of cancer.

There are a lot of other issues and a lot of future risks, but for now they seem like nothing.

Heading the wrong way...

2011-03-08T21:30:00.000-08:00

A little bit frustrated. The only results that are back so far are not exactly good. It may be a fluke and we are going to have to run some more tests but we are not starting out in the right direction.

Edited to Add: We only found out about this late in the day yesterday and I wanted to discuss it with mommy before putting it up on the blog. Consequently I was forced to post from my phone at the end of the day and didn't include too many details.

So far we don't have any scan results. Hopefully we will on Thursday.

What we do have are some blood results that show that Rebekah's adrenal glands were destroyed more than we thought by the radiation and are not producing enough cortisol. This is also known as the "stress hormone" in that your body produces it during times of stress. A brief summary by the doctor is that it helps all the other cells do what they need to do to fight off bad things. A person with little (or no) cortisol could be in life threatening danger even from a basic sickness/bug. Rebekah will be undergoing some more specific adrenal gland testing over spring break and we'll go from there.

A series of lasts...

2011-03-07T08:14:00.000-08:00

Rebekah is in her last MRI. At least we hope it's her last. It's our final 5 year out of treatment followup. It has been a long haul. Hopefully by the end of the month we will be able to call rebekah cancer free.

In a neat weird sort of way her nurse today is the very very first nurse we ever had when we were trying to figure out what that bump was on rebekah's face almost 6 years ago. Sue, the nurse, set the stage for Rebekah to this day feelng happy and excited to come to the hospital despite all she has been through. It's actually wonderful to have her here. We owe her so much. It's calming to daddy in this tough time.

I have only done this one other time alone, without mommy here and that is tough. From the moment Rebekah was diagnosed we knew that we would get through it together. Even though mommy is not here at the hospital with me right now she is still at home in bed and we are still doing it together. Hold on mommy, we can still see Rebekah cancer free together.

Talk To Your Kids

2011-03-05T12:54:00.000-08:00

So that maybe you won't have to suffer the scare this family did today:

So my 6 yr old niece didn't realize mommy and big sis were still in the house and got it in her head she and her little brother were left alone when daddy left with the car. So she decided to take care of the 3 yr old and go find a babysitter - some friends who live several blocks away. When my sister came downstairs, they were gone. Long gone. Empty field with big cliff not far back behind their house. New development with plenty of opportunity to snatch some kids off the street with no-one noticing. She searched and called for almost 1/2 hr before she called me - could not find them. The would be babysitter friends weren't home, but some other neighbors saw them and stayed with them til daddy drove back into the neighborhood and saw them and got them home....

I don't know the answers but these came to mind: Sounds like its time to teach 6 y/o (I have one) a different way to solve this solution. 1. DO NOT GO OUT OF THE HOUSE UNLESS IT IS ON FIRE. 2. lock all the doors. 3. call mommy or daddy's cell phone and if you can't get them: 4. call 911.

Going Home To Jesus

2011-03-04T07:40:00.000-08:00

I went home to Jesus last night. Well at least towards Jesus. In a dream. No, I didn't dream about Frances going home to Jesus, I dreamt about me going home. It was a dream, but yet it was more than a dream. It was surreal, powerful and by the truest sense of the word, awesome.

It started out in the dining room with Frances sitting at the table and the girls around her. I needed to leave but I didn't want to. I came and talked with her. I remember being afraid of asking questions in front of the girls but did it anyway. I asked Frances if we had made sufficient plans for her support and that of the girls. I asked her if she was going to be okay without me. And what seemed most important to me is that I wanted to know what she was going to do for the funeral.

Instantly I jumped to outside. It was early morning and the warming sun was out. It was bright yet crisp and just a wiff of fog was at ground level. There were chairs set up in a line in front of a coffin in front of a row a trees; my coffin I assume. I didn't see any of the people there. I guess I don't really know if there were even people there as I had my back to the gathering - it didn't do so at the time but this bothers me now. I was walking away from the scene through the tall, wet grass. I felt like an animal going into the woods to lay down and die.

Before I could lay down I was pulled out of my body. I was flying up through the sky and it was warm and brilliant. The beautiful vibrant colors of the earth disappeared beneath me and then everything was blue, then white. It kept getting more intense. I never saw anything more except brightness but I was saying "Jesus I feel so unworthy to be in your presence." At the same time I was singing "Holy Holy Holy, Holy is the Lord God Almighty" over and over again.

And then it stopped and I was awake, WIDE awake. I looked at the clock and it was 1:30am. I was scared and listened for Frances' next breath on the ventilator afraid it wasn't going to be there, afraid that instead I would be hearing alarms. I went through what I would tell the girls and whether they would go to school today. I felt emotionally and physically drained as if I was recovering from a whole body seizure.

I know what I was thinking and I know what I was feeling. But now I don't know what to think nor what to feel. I am empty.

Has It Been 5 Years Already?

2011-02-21T14:15:00.000-08:00

It seems like only yesterday we were staying at the hospital for Rebekah's last set of treatments. Many of you were "there" with us. It's now been just over 5 years.

We just started the cycle of appointments that will be the end of her main "follow up" period. She will always be tested annually but the big tests every few months will be done. The next 30 days see us going to the hospital and doctors about 8 times. Today Rebekah and daddy went to get a Chest X-Ray and Panorex of her jaw. Rebekah did OUTSTANDING! She stayed perfectly still for all three of the pictures they had to take including the long Panorex where a machine has to completely encircle her head taking a 360' picture.

We have been to different hospitals recently with mommy's issues but going back to Emanuel is like going home. It is strangely comforting. Every where we turned around nurses and other hospital staff were coming up to us saying "Hi Rebekah" "You have gotten so big" and "You look so good!" Most of them daddy didn't even recognize but they knew Rebekah.

Daddy kept trying to remember how we felt when we were first in the diagnostic imaging department in April of 2005. He couldn't do it very well until he saw the fear deep in some of the eyes of a couple of parents, then it came back with a rush. As if she also remembered Rebekah kept telling other kids there "It okay, it be alright."

When the radiology tech came to get us Rebekah proudly grabbed his hand and led the way through the hospital (her tests had to be conducted in the Emergency Department way away from diagnostics) until we got to the doors that require a code to get in. Rebekah looked at him and said "You do" and he opened the doors. As if the hospital map was burned into her memory Rebekah continued through the maze of the back of the ED to the room where the machines were and marched right in. She pointed to the spot on the machine she has to look while she stands still and asked (ordered?) the tech to put one of his stickers on that spot for her to look at. "Sticker there please" she said. When we were done he offered her another sticker out of the sticker box and she said "No thank you - big box" and pointed to the box up on the counter where the bigger toys were. She does remember the important things!

After following Rebekah back through the maze (and stopping to say hi to a few more staff and other kiddos she came across) we were back to the van and on our way home. Rebekah loudly proclaimed "I DONE NOW." We hope so baby, we certainly hope so.

2011-02-14T17:04:00.000-08:00

In Loving Memory:
Gage Dole (February 14th 2011)

6 years ago three little kiddos, Gage, Josh and Rebekah started the Ewings Sarcoma battle together. All about the same age, all at the same hospital, all about the same time. Until today, all three had survived.

Off all of them Gage and his family have been through the worst of it. Joshie has a trach and Rebekah is brain damaged but each of their parents still get to hold them tonight. Lauren and Trux don't get to hold their little angel any more.

Other than sharing such a horrible experience together we were not that close to Gage's family but nonetheless this strikes us hard. Our prayers and thoughts go out to Gage's family. Please share yours as well.

Gage's Blog

The beautiful white rose that has touched so many of us in so many ways is by and used with permission from Australian photographer Lisa Hocking. Please see her blog and thank her for its use.

Don't Know What To Say

2011-01-27T13:45:00.001-08:00

It is hard to provide updates when you don't know what to say. Not much is changing. The girls continue to go through the routine of school. We continue to go through the routine of care and work.

We are ever grateful to those that come to help, provide meals, spend time etc. I have been "guilted" into providing an update so here it is. Please don't be mad at me for taking the easy way out and "stealing" another's blog. Jenny wrote this and I not only am going to link it here, but also cut and paste it. Why, because it gives you a good insight into what's going on every minute of every hour in our household:

I don't know how to start this so I'm going to just type what comes through my mind and how I'm feeling.

When we have someone available to stay with Scott and Frances I go to the once monthly ALS caregivers support group. There I met Donna who is the wife of Larry. Larry has ALS.

Yesterday morning Scott told me that Larry passed away on Thursday night.

Strangely, the news hit me hard. I'd only met Larry once, and his wife a couple of times. He had the same disease that Frances is dying from and that is almost like a bond bringing you closer together.

To put how I’m really feeling into words is that I'm scared.

I'm scared that I'm not strong enough. I'm scared because this will be the first death of a family member I'm close to. And although this fear has been in the back of my mind since I moved up here, it's gotten worse.

I think this fear is what has been causing problems around the house. After almost 5 months of getting close to the family here, I'm trying to distance myself so it doesn't hurt so badly. But I'm not succeeding. I'm only causing more pain, and not just to me. I'm causing pain to everyone in the household. Scott is getting frustrated with me. The girls are wondering where the fun Jenny they love is. And worst of all, I've hurt Frances. Not physically hurt her but through the things I've forgotten to do, the things I've said, have led her to be hurt and Scott to get upset with me.

I don't want to leave. And the family doesn't want me to leave. But I have to work through this fear.

I feel like God led me here and is now holding me at arm’s length. I feel like I can't find him. And it's painful emotionally and now physically. My body is hurting.

I just want to be left alone to work through this but I also want human comfort. For those of you who have read about love languages, I am a physical touch person. I miss being hugged by my mom. I miss being held and comforted by my sisters when I need to cry. And unfortunately having the kids come hug me or sit in my lap only takes care of part of that emotional yearning to be held and I don't have anyone else to turn to.

I don't know where to go or what to do. I need to repair the pain and problems I've caused but I don't know how. I'm searching for an answer and I don't have one. Not for myself and not for the loved ones who are asking.

Hearing Mommy's Voice

2010-12-26T09:35:00.000-08:00

Last year for Christmas the girls got a cheap video camera that was "Free with $50 Order" from an office supply store. They loved it and used it throughout the year. Sarah was so good with it that this year she got a "real" video camera we found on Woot for $35. In cleaning the card off the old one to put in the new one we came across this, one of Sarah's very first videos recorded LAST Christmas:

I just played it for Sarah and her response: "I love hearing mommy's voice."

Something we haven't done since August...

Christmas Eve

2010-12-24T06:43:00.001-08:00

There have been more than a few Christmas Eve's since we started this blog. This is the 6th if I count right. The first one was at the tail end of Rebekah's treatment; she had survived even after one of the doctor's had given her 30% chance of surviving 30 days and we were hopeful. 3 years ago we woke up Christmas Eve in a rental house because just 2 1/2 weeks earlier our house had been ravaged by smoke and flame; we were stunned. This morning we wake up, back in our home. We are stunned at what mommy is going through and we are hopeful, having been blessed by many MANY more months than the statistics tell us that mommy should have been here.

Tonight, at mommy's request, we are going to try and do what we have always done on Christmas Eve. We will go to Grandpa and Grandma's house for dinner and some presents. This morning daddy will start packing the vans - yes two of them are required to carry mommy, daddy, Jenny and the girls as well as the items we need to take care of mommy. At noon we will start with mommy's shower and that will take three people to handle. 3-4 hours later we may be ready. The preparations and the 30 minute trip will involve a lot of pain for mommy that, in her words, the oxycodone takes the sharpest edge off but does not control.

What will help "control" the pain is that mommy is able to spend yet another Christmas with us. She is able to watch her kids and their cousins open presents. She is able to have them come up and touch her hand - which although it causes some pain, it is a "good" pain. She is able to see the tree. And most important to me, daddy, she is able to hear me say "I Love You" and mouth the same back to me.

Merry Christmas.

I'd Like To Say I'm Sorry, But Really I Am Not...

2010-12-18T13:10:00.000-08:00

Yes, it has been a while. I’d like to say that I’m sorry, but really I’m not. What I am is tired. Many times I pass by here wanting to put up an update but I just haven’t felt like it. Many times I have thought about it but I just haven’t gotten to it. Until now.

Mommy’s illness continues to progress. She is incapable of moving anything but her eyes and lips reliably. Most of the time she can move other parts of her head but not much. She has lost control of her neck muscles making it impossible for her to hold her head up on her own without supports. She is in a lot of pain and though she tries to deny their use, she needs a fair amount of pain killers to make it through the day. She cannot take anything by mouth and lives off of whatever sustenance we can put into her feeding tube, directly into her stomach. She cannot breath on her own and every breath is provided to her through a tube in her throat by a ventilator. She cannot talk but communicates with us via a computer that is controlled by her eye movements upon which she can type out letters and words and then “speak” them to us; it’s slow but it works.

Through the day. Maybe a good update would be to give you an idea of what our days look like. “Our” means those that you have come to know: Daddy, Mommy, Rebekah and Sarah as well as Jenny, mommy’s cousin who came from Arizona to live with us just as the girls started school in September. Without Jenny we would not have made it this far.

We (usually Jenny) awake at 6:30am to get the girls off to school. Like most families, this is a bit like herding cats, but it usually works. Rebekah gets on the bus at 7:45am and Sarah at 8:15. Immediately after the girls are gone mommy’s treatments begin.

We have to start with Oxycodone because there will be painful movements involved here. All of mommy’s medicines (and they are extreme) are ground up, mixed up and put in a syringe. We then put them down her feeding tube. Then I pull her forward in bed and Jenny tucks a compression vest down her back which wraps around her. After the vest is on we start an Albuterol breathing treatment to break up the crud in her lungs, following by 10 minutes of painful pounding on her chest (the compression vest does this for us) and 10 rounds of being hooked up to a cough assist machine. The cough assist machine hooks to the tube in her throat and forces air in and then sucks (hard) air out, helping us suction out the gunk in her lungs that you and I cough up and clear on our own on a constant basis. After this is done we start her on a bag of food and then some water into her feeding tube. Sometime close to 10:00am this process is done.

From 10:00am until Noon we remain available, listening for an alarm that she can trigger on her computer or a doorbell button that she can, just barely, still trigger by pushing out her chin. When she needs us (usually once or twice) we come running with pain meds, to move her around in bend, suction out her throat or her mouth or ???

At noon the treatment starts all over again and is usually done by 1:30 or so. From then until 4:00pm we listen and wait.

At 3:00pm Sarah comes home (and then Rebekah at 3:45pm) and mommy tries, with the use of her computer, to ask about their day. The girls try and talk with mommy but it is difficult to wait for her to finish questions and they have short attention spans. Mommy does have some phrases pre-programmed to help this.

At 4:00pm the treatments begin all over again. Somewhere after they start, one of us has to make dinner. Some of the time a dinner is brought to us ready to cook or even ready to eat – this is awesome! By 6:00pm the treatments are about done and the girls are getting ready for bed. Kind of a reverse of the morning rat race.

At 8:00pm another treatment and the removing of the compression vest – again very painful.

At 10:00pm the last round of medicines for the night and the changing of the bandages around her throat, tummy tube and catheter that she uses to pee into a bag.

On top of and fitting in between these we have other issues like showers and pottying. Mommy cannot move on her own at all so every movement has to be done by at least two adults. We have to lean her forward and tuck a sling in behind her back, then we lean her back and tuck the leg straps under her legs, all of which is again, very painful. An overhead lift comes in over her and lifts her into the air and slides her off to the side of the bed where we then lower her onto a potty/shower chair (or her wheelchair if we are going out – which is obviously rare) and try and make her comfortable. Whether she is showering or pottying, everything needs to be done by a helper. No matter what we do we have to deal with a vent hose attached to her throat and she can’t get more than about 6 feet from her ventilator at all times.

Throughout the night she will have her lungs periodically fill up with gunk and need suctioned out. Sometimes only once, sometimes a lot more.

Take a moment with me and put yourself in her shoes. Keep in mind that ALS only affects your muscles and not the reality part of your brain. She knows and feels everything that is going on, she just cant make her body do anything no matter how hard she tries. She hears and wants to speak only she can’t. She can cry and does a lot of that too. Put yourself also in Jenny and my shoes. Between working at the home office and taking care of the girls, mommy and the house, this is a 24 hour a day job. It is emotionally as well as physically demanding. It is draining.

We do have a couple of angels that come help us out throughout the week. One day a week we have someone here most of the day to help out with some of these things and let me work or Jenny rest. A couple of nights a week we have a person who will come and spend the night with mommy so that Jenny and I can get a full night sleep – and that is HUGE! Sometimes someone will come and read or just sit and chat or watch a movie with mommy – that too is big as it gets lonely in her ever confining world.

Every day is a challenge, but even more so every day is a blessing that we wouldn’t trade for the world. As you go into your Christmas time please disregard the secular bustle and keep us in mind, praying for us as well as being thankful for all that you have, for all that REALLY matters.

Mommy and the Girls at Rebekah's Birthday

Around and Around

2010-11-02T13:40:00.000-07:00

5 years ago a complete stranger helped us get through some very hard times. She is a wonderful artists that gave us many gifts, including the format of this blog that we look at almost daily and hundreds of thousands have been blessed by.

She has recently written an article for a mom and children who have lost their father. Something that I can't understand, I can't relate to, but will have to all too soon. I can't read the article in its entirety but you can:

Why

I don't know 'why?' but I do know that it is no coincidence that Darlene posted this today.

Consider This - From a Person with ALS

2010-10-30T10:49:00.000-07:00

We received this from Jan Elser, a person with ALS (PALS,) on the email list from our ALS support group. I thought it enlightening and decided to pass it on to you. I've made small changes to Jan's original to fit Frances' particular condition. Thank you Jan.

Consider This

What if you woke up in the morning at your usual time of 5:30, eagerly waiting the new day but could not get up. What if you wanted to open the shades and view Gods creation yet one more time but can’t. What if you can not open the door every morning and breathe the fresh air. What if you could not dress dress yourself, get your clothes out of the closet or hang them up, put on your favorite jewelry. What if you could not shampoo your own hair or bathe yourself. What if you had to wait until a helper arrived to be lifted painfully in a sling, moved across the room on an overhead track and set on a potty chair, hoping your body will do what it has done for 40 years by itself because you can’t control it any long. What if you could not walk over to the coffee pot and brew a fresh cup of coffee for yourself. What if you could not pour yourself a cup of coffee nor carry it to your favorite chair. What if your hands can no longer lift your immobile legs into place.

What if you only had no motor skills, not being able to move anything except your lips and eyes. What if you can not reach the remote control to turn on the TV. You can not walk, stand, set down or get up – at all. What if you could not straighten your pillow at night, lift your legs into bed, or turn over in bed. What if you can not reach the telephone. What if you can only go places with proper facilities and never go by yourself. What if you could not cook or serve your own food. And even if you could, what if you could not eat except through a tube in your tummy. What if you can not hold your children in your lap, touch them, kiss them, or even see them unless they stand in the right place in your room. What if you can not open your car door, or any door, or drive yourself to Starbucks or anywhere at all. What if you could not speak and must communicate by controlling a computer with your eyes, typing out what you want to say one slow letter at a time moving your eyes over a keyboard and clicking by blinking.

WHAT IF THE BAND PLAYS AND YOU CAN NOT DANCE!

You twist your leg around and give yourself a swift kick in the butt and say to yourself, look Chickie Poo, life goes on. I still have my eyesight and my hearing. I can breathe (albeit with a ventilator through a tube in my neck/throat.) My mind is active and in tack. If they come into my room and stand in the right place I can see my children. Here is so much to be thankful for. I have hundreds of my friends praying for me.

I have a husband who is attentive to me. No one has refused to help me when I ask. We have 2 healthy children. God has taught me to let go of earthly concerns. It is humbling to be dependent on others for my existence, but that is where God wants me to be.

Counting my blessings,

Jan [Frances]

Tell Us What You Want To Know

2010-10-17T22:23:00.000-07:00

We are getting asled for updates. Everytime I start one it sounds too negative or like I am whining. What do you want to know? Please tell us by commenting here.

HELP The Walk To Defeat ALS - THIS SUNDAY

2010-09-20T10:34:00.001-07:00

Very good friend Janelle has put together a team for this Sunday's Walk to Defeat ALS. She is looking for walking partners and/or donors. See her page here:

Fighting For Frances

In Janelle's own words:

Hello family and friends of The Adams!
We are trying to get a team together in honor of Frances for the 'Walk to defeat ALS' in Portland on Sunday September 26th. There is no fee to walk, you can just show up the day of the walk, or you can register and get a t-shirt (still free). For anyone interested please email me at Duckydelaney@ A OH LLLL.com (Yes, you know that should be "aol"). If you email me, please type in 'Walking for Frances' in the subject line, so the emails don't get sent to my spam folder. Also, for anyone interested if you have a catchy team name idea...we don't have one yet! Use your creativity! :) Thanks much!! Jenelle Delaney

Home

2010-09-15T16:27:00.000-07:00

Our family is all back together again. Things are stressful and a huge mess. But we are home.

A Life Lost

2010-09-14T15:48:00.000-07:00

The life of another PALS (Person w ALS) was taken from him last night.

Steve was a great inspiration to us even though we never knew him personally. His perserverence as well as his dedication to making things work have given Frances and I (and many others) the ability/will/example to make things happen.

Please pray for his family as they process his loss.

To remember Steve, here is the Oregonian article from 2009.
Oregonian article about Steve Sall -
http://www.oregonlive.com/education/index.ssf/2009/04/with_math_tutor_steve_sall_dis.html

Oregonian video about Steve Sall –
http://videos.oregonlive.com/oregonian/2009/04/with_math_tutor_discovers_mean.html

Monday Update

2010-09-13T17:32:00.000-07:00

Wow, where to begin?

Saturday morning daddy came into the room to a scene that we didn't want to see. From his facebook that day:

"Not a good morning. Came into Frances' room to the crowd and bussle of working a code. Took 45 minutes and major interventions to get her "back.". More later...

They had moved her and a mucous plug lodged/dislodged in exactly the wrong place. Her oxygen saturations were in the 20s (75%+ is necessary for life.). She was off the ventilator and being bagged by hand. All the suctioning in the world couldn't improve things. Had to bring in a camera to guide the suctioning into her lungs. Once they finally found the blockage and got it out we tried putting her back on the vent and it wouldn't work. We had to go find a new vent.

Had she been at home this could have been disasterous. For the first time in a while i thought we might be close to a "no more" decision."

From that point on things have steadily improved but mommy (and daddy) have been a bit more scared for everything little thing.

Saturday night mommy had improved enough that daddy was comfortable leaving her in the hands of Grandma M to come take the girls to church. Grandma A had taken the girls out shopping for school clothes and daddy and Jenny picked them up and went to church for the first time in a while. It was difficult for daddy being there without mommy. Instead of absorbing the worship and praising back out loud, all daddy could do is just sit and absorb. When he tried to sing praises all that came out was tears.

Sunday and then today have seen even more improvement and the ventilator that mommy is to go home on has been delivered to the hospital and set up. Tomorrow (Tuesday) morning she will go onto that vent to try it out. Because the home vent doesn't have wireless alarms to the nurses' desk somebody is going to have to be in mommy's room 100% of the time in case an alarm goes off. Likewise, somebody will have to be at home with her 100% of the time when we do go home. As long as mommy can get to her alarm they won't have to be in the room with her but do need to be close.

Assuming all goes well over the next 36 hours, we could be going home on Wednesday. This is a little longer than we wanted to be at the hospital but even with the problems mommy has been having is still a bit faster than normal.

Please pray for continued stabilization and the strength to go home. Please pray for knowledge and expertise on the part of the medical staff. Finally, please pray for support at home when we get there - it doesn't take much knowledge nor any medical training and anyone who has said they want to help can come spend a day or a night with mommy.

Watch Out...

2010-09-10T19:10:00.000-07:00

...Mommy is on the net with her speech device. Can't type much but can browse. Leave her a message here if you would like to.

Wednesday Update

2010-09-08T15:35:00.001-07:00

Not exactly sure what to write here. Although a lot has happened we are still in much the same situation as we have been. Mommy is resting on and off, much of the time with the help of drugs. She is in a fair amount of pain most of the time but a combination of pain killers helps to keep the pain tolerable as long as we are not moving her too much.

She has been having a lot of mucous in her lungs and has required the doc going into her lungs with a camera and suction tube to find the little mucous spots and suck them out. Once we do that her breathing is pretty good until they build up again. As time goes on the time between these "cleanings" is getting more and more. Right now she is still on a fair amount of oxygen supplementing her ventilator. We would like her to be off oxygen all together and just on "room air." Today she was weened down from 45% oxygen to 25%. At 25% she is just barely holding on where she needs to be right now.

Through the help of a lot of wonderful people (and a bit of encouragement from daddy) it sounds like mommy's own ventilator will be here tomorrow. Once she gets transferred over to that we accomplished one more hurdle on going home. There are going to be lots more, mostly relating to her ability to keep her lungs clean and to a slightly lesser extent our ability to prove to the doctors that we can take care of her in her condition once she goes home. But at least we are knocking out the things that ARE in our control. We could be looking at 4-5 days more (at a minimum) to a week to 10 days or more.

It's very hard for daddy to split his time between the girls at home/going to school and his number 1 girl here in the hospital. Luckily Uncle Chuck is coming to the hospital tonight so that daddy can get home to at least help the girls get off to the bus one more time this week.

A HUGE thank you to those of you that have sent financial contributions. There are no words that we can say that can truly express how wonderful that makes us feel and what a burden that helps to relieve. No words except "Thank You." They seem so small but come with so much emotion.

PS - Hospital food ain't so grand after a while :)

Reflections on Breathing

2010-09-06T10:26:00.000-07:00

"It's like a breath of fresh air..." How many times have you said that? How many times in the last 24 hours have your breathed air in? Breathed air out? Now how many times have you thought about it? In EMS when it comes down to basics there are only three Airway, Breathing and Circulation; and 2 of those 3 relate to breathing. Without it we are dead. Breathing is at our core yet we don't think about it too often. And even less do we give God thanks for it.

Here we sit at the hospital with so much going on around us trying to keep mommy alive. A huge number of people (and an even larger number of dollars) focused on her medical treatment and it still all comes down to breathing. At this point we have been forced to go above and beyond what nature (and God?) had planned for mommy and put her on a machine to do what she can't do naturally. There is a suitcase size machine with a lot of numbers on it and a lot of tubes coming out of it right next to her bed. It's sole purpose is to breathe for her Without it she will be dead. When we choose to no longer participate in this artificial existence and remove that simple three prong plug from the wall she will be dead.

A "simple" thing like breathing that we all take for granted will be the difference between mommy being here and playing with her children, loving with her husband and sharing her beautiful smile and personality with the rest of the world. It will be breathing that takes her home to be in the waiting arms of her loving Father and will reunite her with her earthly father who was taken oh so cruelly in the same way.

How is your breathing today? Are you appreciating every breath you take in? Hopefully you will be uplifted like we have, rising to the place where taking in "a breath of fresh air" has new meaning to you. Hopefully you can take the time like we now do to breathe your next breath and say "Thank You God for that last breath." How fitting is it that as I end this post I am hearing these beautiful words played in our room:

This is the air I breathe.
This is the air I breathe.
Your Holy presence, living in me.

This is my daily breath.
This is my daily breath.
Your very word, spoken to me.

I..., I'm desperate for You...

Almost Back To "Normal"

2010-09-05T08:52:00.000-07:00

Normal is taking on a new meaning for us. We are back in the "standard" respiratory wing. 2R29 at Providence Portland for those that are taking notes. Like when Rebekah was in the hospital, there always seems to be one room that you get more often than not - for us this is it.

Mommy got out of ICU yesterday about 5:00. We had a bit of a problem that delayed our move and has put one of the greatest nurses we have had in a bit of a scare. Please pray for her for peace goodness.

Once back in our regular room the set up began. Mommy is on a ventilator that does all of her breathing for her and continuously sends her vital statistics to the nurses desk via wireless - pretty cool. Daddy even helped get their modem working right when it was not sending one of the data streams correctly.

Last night Uncle Chuck came and "slept" in the room with mommy. Slept is obviously a euphamism for sat up next to her overnight. Although this morning when daddy came into the room Uncle Chuck was laying down asleep on top of the air conditioner - the same type that hotel rooms often have. That had to not be comfortable. Daddy slept in the van with the air mattress blown up this time. The air mattress combined with no early morning encounters with security made for a pretty good night.

This morning we set up a talking computer loaned to us by the ALS Society. Mommy is busy building phrases that she wants to be able to say to us. She can build them with letters or words just by clicking on a mouse. When her hand can't do a mouse anymore she can control the cursor and click just by moving her head - it's pretty cool. It's a Dynavox V Max for anyone who wants to look it up.

Haven't heard anything since yesterday afternoon about the girls so camp must be going okay.

Pray for a good recovery period and for strength for mommy and those taking care of her. Especially pray for our nurse friend please.

Post Surgery

2010-09-04T09:43:00.000-07:00

Lots of stuff over the last 24 hours.

Right about noon on Friday mommy went into surgery for a tracheotomy (tube in her throat to breathe through) and to be connected to a ventilator. Surgery was short at about an hour. She did great. Right after surgery she came back to the Intensive Care Unit where we still are today. She is in a lot of pain and we are trying to keep her heavily sedated although she has been able to answer questions and is not quite "out of it."

Last night Grandma M came and stayed in the room with mommy so that daddy could go get some sleep in the van. The area that he had slept in the van in the past was an out of the way parking deck but this time he decided to move to the main parking deck to be closer to the Emergency Department entrance which is the only one that you can come into during the night. Big mistake. More traffic and more light. Solved the later by putting some jackets blocking the front windows but that drew too much attention apparently as he found himself being woken up by radios outside the van at 3:00am and then having to explain to security what he was doing there. There is some talk that there may be some room somewhere here in the hospita that daddy can get some real sleep and maybe do a little work while we are here - we have a nurse and a respiratory therapist right now that is pushing for us.

The girls are on their way to Candlelighter's Family Camp. A year ago Sarah "married" Alex and they took their honeymoon on a golf cart to Sacramento. This year Alex's family was gracious enough to come pick up our van and take our girls and their two kids all to camp. We will miss being there with the girls (and seeing how the camp turns out as mommy and daddy were both on the comittee who put the camp together) but we are glad that the girls get to go.

Where we go from here today is up in the air. We may stay in ICU or we may go back to her main room on the respiratory ward. We will be in the hospital 7-10 days so that the tube can heal enough to be taken care of at home. When she comes home she will have to be on a ventilator 24/7. There is a chance that she will be able to talk a little bit by moving some air around the tube over her vocal cords but that is not for sure yet. We were not counting on this at all so it is a pleasant surprise that there is at least a chance.

Having someone with mommy at the hospital (days and nights) so that Daddy can be home for some work and to get the girls off for their first week of school is our biggest need right now. Please pray for that and if you may be in a position to be able to help with that please give Nancy (our Volunteer Coordinator) a call or email: 5o3-648-34 Seven Six, or njbmiller AT GEEEEMail.com

Emails are great as are comments here (or on daddy's facebook: search for adamsesq @ that yah... place.com) but visitors are not so much right now.

Surgery Today - Probably

2010-09-03T08:47:00.001-07:00

We have not spoken with any doctors yet but the messages from the doctors through the nurses is that surgery is going to happen "some time today."

We still need to wait and talk with the ENT who will actually do the surgery until we know any details. But what we do know generally is that the girls will definitely be going to school all next week without mommy home. There are people at the house with them but we will also be needing some additional help there and/or to stay with mommy in the hospital. Please call Nancy, our volunteer coordinator at 5o3-648-34 Seven Six, or email her at njbmiller AT GEEEEMail.com

Please pray for peace and a good surgery. Mommy is really having a hard time knowing that she only has a matter of hours to be able to breath/speak normally ever again.

At the hospital - again.

2010-09-02T17:10:00.000-07:00

Ok, here we are again. We are trying to get mommy's tracheotomy put in and have her put on a ventilator. You would think that, given that every doc/nurse we have dealt with in the last 7 days has insisted on a vent, that this would be easy. No chance.

Over 24 hours of trying to get a confirmation that we could get this done before the holiday weekend and finally we headed to the hospital after being told "everything is ready for you but we don't know if it will get done...." What the heck?

We got here around noon and got admitted. They did all the tests they needed to do to determine that mommy was okay to have the surgery - she was. But oh no, no surgeon can do it. Actually the surgeon could but won't because she is too tired having been up for 3 days and this isn't "an emergency." And we can't find out about tomorrow's schedule until tomorrow. This system sucks.

We will spend the night in the hospital tonight but if they can't get us on the schedule tomorrow it won't be until Tuesday so we'll be going home. There are lots of frustrations going on here and we won't hit you with all of them, but be praying for us. Apparently you should be praying that it doesn't become an emergency and we end up with a tired surgeon... Did we mention that this system sucks?

Short Post

2010-09-01T12:32:00.000-07:00

with a lot behind it.

Mommy is afraid to continue trying to breathe on her own and can't do it anymore. I'm working as I type to try and arrange an admission to the hospital as early as tomorrow morning to put her on a ventilator. In many ways I'm afraid she won't come home...

Family, friends or whoever - please don't call me right now as I'm trying to pull this all together plus organize the girls and work. I'll call you when I get a chance.

Please DO pray for mommy.

Hospital Day - Rebekah

2010-08-25T05:30:00.000-07:00

Changing gears on you here. Daddy and Rebekah are off to the hospital for 4 1/2 year scans. Praying mightily for the wonderful three letters - NED - No Evidence of Disease. We are almost to that miraculous 5 year milestone.

This will be the first time daddy has done this alone and there are A LOT of emotions that are going along with that. All night long all daddy could dream about was trying to figure out how to take mommy, who is almost completely bedridden, to Rebekah's funeral...

Help...

2010-08-24T06:49:00.001-07:00

Please see previous post.

We met with Nancy, our new volunteer coordinator and she is working on lots of slots to fill.

I know a lot of you have been asking/offering to help but when it comes down to those that have put out more than a vague "If I can do anything let me know..." the list is pretty small. Please email us with your contact info so we can get it to Nancy and be blessed by your help.

We are still working on ways, other than the obvious help pay for someone to come in, that those of you from far away can help - please stay tuned.

Needing Help - Can You Help?

2010-08-22T09:19:00.000-07:00

We have reached the next stage. Throughout the summer we have received a lot of "live in" help with Genia, Annie and Frances' mom. Now that summer is over we are loosing a lot of that help. Unfortunately that also comes at a time when Frances is getting worse and needing more.

Right now Frances is in bed 75% of the time and in the wheel chair 25% of the time. Throughout the day she needs medicines, being fed, moved around in bed and just generally having someone keep her company. She also needs some tending to a couple of times a night as well.

The house also needs some caring. Cooking, cleaning, organizing, helping the girls get to school/get home (on and off the bus), meals, etc. Once the girls are home from school they also need some attention.

While I can do some of this, I can't do it all and continue to work. Without work we don't eat or have insurance. Although I do a lot of my work from home, if I need to leave we need at least 2 people to be with Frances (and/or the girls.)

So mainly, we need bodies for part/all of any day or night. It doesn't take any special training although not being afraid of bodily fluids can help - kind of like being a mom! Unfortunately we are not in a financial position to pay for someone to help with these things (there are people out there for $15-20/hour) and because we are trying very hard not to go on need based medicare, we don't qualify for any free in home help.

Starting this week we have a formal care organizer (thank you Nancy) that will be helping to organize all of you that are willing to help. In order to get her up to speed it would be real helpful if you could reply to [scott and frances AT (take out the spaces and use the right symbol) attorneyadams.com] with who you are, what/when you could help and an email, phone number and home address we can prepare a master list of people that Nancy can call on when we share our needs with her.

And of course, please be praying for us, for help, for finances, etc. Thank you.

Home Again - Rough But Worth It.

2010-08-17T10:52:00.000-07:00

Yesterday at 6:00pm they did another surgery on mommy to put a catheter straight through her side into her bladder rather than having to go up through her urethra. Although the staff at the hospital was not exactly fond of the idea, we had worked out with them that as long as mommy was stable after the surgery we were leaving last night. And at 9:00pm we did.

By 11:00pm mommy was home and in bed. She is on oxygen and/or a breathing machine all the time, is taking her food and medicine through a feeding tube and is generally happy to be home. It's rough but worth it.

She continues to have a lot of head/neck pain. We believe this is because the muscles in her neck have been affected by the ALS and she just doesn't have the strength to hold it up anymore. Hopefully we can get some answers from PT when we see that therapist here at the house in the near future.

Again, it's rough but worth it.

My What A Difference...

2010-08-15T13:17:00.000-07:00

...a few hours makes.

Last night we were mostly stable, but very poor Frankly daddy expected (because the doctor told him to) to be called back into the hospital as mommy was being transferred to the ICU and having a breathing tube/ventillator put in. That never happened.

4 hours ago we were running down a cardiac scare thinking she might be having some sort of cardiac event. We were also ultra sounding and prepping for the thoracentisis (draining that fluid) that we posted about. That never happened.

And now, well, daddy is laying in mommy's bed typing out this message and mommy is in her wheelchair, off the breathing machine and on just a little bit of oxygen. She is moving herself around and finally making decisions for herself again. If things go the way they have been in a few hours she may even be off the little bit of oxygen that she is on.

There is nothing we can attribute this turn around to except prayer. Don't know why we would be surprised as we have felt His miraculous hand smack us upside the head time and time again. Haven't talked with mommy about it, but daddy (yet again) has a renewed understanding of walking through the valley of death and the promises surrounding that trek. Ever think about the fact that the Bible says we WALK through the valley, not hang out and camp there? That is pretty cool.

Sunday Morning - A Little Bit From Daddy

2010-08-15T08:50:00.000-07:00

Afraid to be optomistic and this point but having reason to do so.

Daddy spent the night out in the van on a partially inflated air mattress and Grandma M stayed up all night sitting in a chair next to mommy. Over night she did not have ANY pain medicine and stayed on a different bi-pap machine that is essentially a ventillator but connected to a mask and not to a tube in her neck. They have been able to decrease the supplemental oxygen and her breathing is still shallow but has slowed down closer to a normal rate. This is all very good.

They came in this morning and took another x-ray of her chest in order to see if it is possible that the positive pressure of the breathing machine may have pushed some of the fluid out of the space between the lungs and the lung walls. We are still waiting on the results of the x-rays and whether or not they are going to do another blood gas level to see where her CO2 levels are. That is going to be the pivotal point to know whether we are getting better or not.

I, daddy, have been posting most of my personal feelings/observations over on facebook but will touch on them a little here. I need more of me (and yes, I realize that is scary to those of you that know me.) I need to be with my little girls who have great grandmas taking care of them but its not the same without mommy and daddy with them. I need another one of me to be taking care of mommy; in fact I think I need two of me here for that as 24/7 is a lot. And then I need another of me to take care of my clients. I have a lot of working backing up from the end of last week and most of it is the kind of work that I cannot just ask someone else to do. And I supposed I finally need another one of me who could just go for a walk, a ride or ??? to try and clear my head. I am severely torn over which one of me to be at any given moment.

Many have asked about helping and I honestly don't know what to say or what to ask. Company can be comforting or intrusive depending on the particular moment. Good friend Shawn brought me a hot breakfast yesterday and I am still crying with joys of thanks as to how wonderful that was - it was so little but SO BIG! I am very much beginning to dislike even going into the cafeteria here. Everything is happening moment by moment so I can't plan anything from any of you yet at any moment there are so many little things that could be helpful and I just can't figure out how to coordinate it all together.

We definitely are not leaving today and, as I said somewhere a few days ago, tomorrow ain't lookin great either. I don't know how long we are going to be here but I could really use some of you who are personally close with Frances to come relieve me and Grandma so I can either get some sleep and/or some work done.

I guess most of all I need some clarity.

Morning After

2010-08-14T12:00:00.001-07:00

Thanks Teresa for the reminder. I guess I hadn't realized that I hadn't put up an update this morning.

The night went pretty well as far as nights in the hospital can go. Mommy continues to have breathing problems; that is our focus now. Either we can ween her off oxygen or we'll have ongoing problems. She needs her breathing machine or her saturations fall into the 70's which is not good. With her breathing machine she was at 96 with lots of oxygen (15lpm) and daddy is actively working on lowering that. We are at 8lpm right now and she is maintaining at 93% or so. Our goal will be in the 90's with no oxygen. Daddy also ordered a meter that will be delivered at home on Monday if Amazon/FedEx work right together.

We JUST spent about 30 minutes suctioning out her mouth, nose and throat as she felt like there was a lot of mucous building up - and she was right. It brought on a lot of pain and she needed the pain killers that she was trying to see how long she could go without. But she is resting peacefully again, hopefully with a slightly more comfortable mouth/nose/throat.

Only time will tell, but daddy's guess is that we are going to be here a while.