20 years ago

Twenty years ago this week I, Mommy, was in college and studying in Germany. We were in West Berlin attending a week long institute on the situation with two Germanys. One day we spent the day in East Berlin and had the opportunity to see a little bit of the way of life there. That evening, we saw a very large demonstration. The next day, we woke up and were to attend classes on "everyday life in East Germany". Because the East German government had opened the borders and allowed their residents to leave, they didn't know what to tell us. Instead, they drove us to the wall at the Brandenburg Gate. That day, we were able to stand on the wall. I, with some of my friends, stood on the Berlin wall. They were starting to chisel away at the wall. It was an amazing time in history and incredible to be a part of it.

I can remember going to McDonalds in West Berlin and it was packed. There were so many West Germans buying food for East Germans. It was heartwarming to see the generosity of the people. The lines were long and it took a while to order.

A few days later, we finished our classes and needed to head back to Heidelberg, where we lived. We were on a double decker bus with about 50 students and several staff members. What should have taken about 8 hours (or so) took well over 24 hours. It was stop and go traffic. Some of the worst traffic that I have ever seen. People were literally getting out of their vehicles and walking around visiting with other drivers. Because of regulations, we were not allowed off the bus. The route we had to take from Berlin to Heidelberg took us through East Germany and into West Germany. There were many MANY East Germans doing the same thing. It was not a fun experience.

We were back in East Berlin the following February. Several of us went into West Berlin and were back near the Brandenburg Gate. The river runs through the city near there. From the river and running along the wall are a number of crosses for people who lost their lives trying to flee from East Germany across the wall. The cross nearest the river had a March 1991 date. On the other side, about 10 feet in front of the wall was a cross from February 1991 - just one year earlier. Behind it, the wall had a hole through it that was about as tall as I am and nearly as wide. It would have made an incredible picture if it weren't for the fact that it was pitch black and I couldn't get both the cross & the hole to show. But that is a memory that has stuck with me. People had lost their lives only a year earlier.

I am thankful for the opportunity to witness the "life changing" events of the time. It was an incredible time to be there and see what was happening in the two countries and listen to West Germans talk about the events and listen to East Germans talk about their lives in East Germany. We saw a man who lived in East Germany and considered fleeing (before they opened the border) and he and his family did flee. We saw him after the East German government opened the border. We asked him if he was happy to have fled. Without people like his family, the East German government would not have changed their policy. They had to leave most of their things behind, but they were happy to be together and in a better place. What an incredible story he had to tell us.

The anti-coagulants have aleviated much of the pain. We are working with the docs to adjust the level of medication so that my blood is "just thin enough". We are having to check in with the doc once or twice a week.

Walking and getting around is getting more and more difficult. If I'm not at home, I'm pretty much using a cane, walker, scooter or wheelchair. At home, I'll use the cane or walker or do some walking without cane or walker, but taking a few steps from holding the wall to holding the couch to holding the table, etc... It isn't often that I walk from one end of the house to the other without any form of assistance.

I can't pick the girls up when I'm standing - it just isn't safe. I continue to need to adapt the way I do things. We met with the physical therapist at the new ALS Clinic to look at a brace for my leg. After trying a few different ones, we (the physical therapist and I) are not convinced that any will help. I've adapted how I walk and while it might not be "normal", it is mostly working. I do, however, fall often. Sometimes I am able to catch myself, but not always.

It is past bedtime and I'm running out of steam, so I'm going to close this for now. The news reports about 20 years ago, got me thinking and I know many of you have been looking for an update so I thought I'd write a little something.

Filling In From Yesterday

Thank you for those of you offering your prayers and support. Yesterday was an adventurous day - and around here that can have some different meaning!

We started the day going to the second als clinic in town to try and compare it to the other one, trying to see which was a better fit for us. Both clinics are very very well known and competent so we thought it prudent to make sure we were making the right choice for mommy. Basically it was a chance for us to interview them and get an idea of what they had to offer.

While talking about mommy's limitations, pains, etc. the doctor that we were interviewing said that she didn't think mommy's current pain was the type of pain most als patients experience and in fact she had some concerns. She immediately sent us over to get an ultra sound.

The ultra sound tech finished her leg (and in fact did her other leg too after his findings on the first.) He asked her not to move and told daddy "when that phones right there on the counter rings it will be the doctor wanting to talk to you" and went off to call the doc. The doctor told us that mommy had some pretty serious blood clots in her leg that were in danger of dislodging and causing an embolism. We needed to go directly to the Emergency Room.

In what can only be counted as a small miracle given the over flowing of the emergency rooms in this area with the swine flue, this major metropolitan emergency room was empty and we were seen immediately. Mommy was given in injection of Lovenox which is a pretty powerful blood thinner and we were sent home with 14 more shots to give mommy over the next 7 days. She was also started on oral coumadin (warfarin) which is another thinner. Apparently she will need to be the coumadin for a long time - possibly for life.

While the ER doc was talking to us about Frances he shared about a friend of his that has recently been diagnosed with a disease similar to what mommy has and the doc was pretty distraught about it. We talked with him quite a bit and shared stories as well as some information. The doc had been doing quite a bit of "grasping for straws" research and we talked about some studies going on in Italy. Interestingly enough mommy was familiar with this study not because of her issues but rather because of Rebekah's as the same study is thinking they might have some information relating to Ewing's Sarcoma as well as these neurological diseases. Over all we got some good information but I hope also shared some peace with the doc.

As we write this about mommy's issues we are reminding that we have diverged quite a bit from this blog being totally about kiddos and if that bothers you we are sorry but it is about our lives that some of you find interesting and we enjoy using to share God's love and strength.

An even quicker update ....

Will post more later but we are in the Emergency Room right now with a blood clot. Prayers would be really helpful.

Quick Update

Just a short little update to let you know where things are.

Yesterday morning mommy was up about 20 minutes when she called to daddy in his office and asked him to go get her wheel chair out of the car. So far we have not had to use the wheelchair in the house but only when we were out and about. She has been using her cane and furniture pretty extensively in the house until now. But the pain of being up on her leg has just become too much. We knew it was coming and had planned on moving things around in the house to make room for a wheelchair this weekend, but instead we spent much of yesterday morning working on that.

Today Grandma C is taking Sarah to school and taking care of Rebekah while mommy and daddy head off to a new als center. It is kind of a second opinion, not of the disease but rather to see if the care center we have started with really is the right one for us.

Then this afternoon we are going to the home of a wonderful friend whom we have not yet met that is donating a wheel chair, scooter and electric hospital bed to us. There are no words in the world the express how meaningful that is.

Tomorrow is a work day with a lot of house organizing and work outside including the building of a handicapped ramp for the front door so that mommy can actually get the wheelchair into the house without daddy having it pick it up the steps.

There are a lot of steps needing to be taken much more quickly than we wanted. Continued prayers and support as we work through that is greatly appreciated.

Tuesday

Sorry, can't come up with a better label for today.

Rebekah had school today and Sarah was at home. While at home Sarah was complaining of her ear really hurting so mommy and Cathleen took Sarah to the doctor. Doc doesn't see any signs of infection but gave her some numbing drops in case it continues to hurt.

Daddy had to take care of getting Rebekah ready for school this morning as mommy was in too much pain. After taking some pretty serious pain killers mommy was able to get up and do a few things early morning but the pain was back this afternoon and mommy is back in bed. Daddy will take care of dinner and bed time tonight.

The events of the day - CONCRETE!!!!

Here is what it looked like when we were tearing things out:


And now:


The old walk was too narrow, broken and uneven to get a wheel chair up it. Now we could land a small plane on it it seems! This picture is of Mike, the owner of MLM Construction who donated his and his crew's time and materials to make it possible. If you ever need concrete work done in the Portland area please get a hold of Mike. He is a major answer to prayer in so many ways!

And then of course there is the REQUIRED action of handprints in the new concrete. Daddy took the girls out and they picked out a corner right out in the middle of everywhere to put their hands and write their names in the concrete for all the world to see forever:


It has been a rough day but emotionally it is a huge relief to have the concrete done. Thank you all for continually lifting us up!

Atlanta Update and More

We are home from Atlanta. We got home Saturday night and were planning on having the girls spend Saturday night also with Grandma so we could "recoup." But we couldn't not see them so we met them for dinner at their favorite, Red Robin. After seeing us Rebekah HAD to come home with us so she did. Sarah was just fine to stay another night with Grandma so she did. We picked her up after church on Sunday and went to her friend (and husband from this summer's camp)'s Make-A-Wish kickoff party. Go enjoy Mickey Alex! And tell him we said "hi!!!!"

Before talking about the trip let's talk about some wonderful things that have happened. Today Mike, the concrete contractor showed up and formed the front sidewalk out and ordered the concrete for tomorrow. That should be just in time for us to build the ramp this weekend. We are hoping to be able to pick up the promised wheel chair later this week too. This was really a needed boost after a very emotional and tiring weekend.

As those of you who have read the last couple of posts know, we went to Atlanta the end of last week to allow mommy to participate in a medical trial for familial als. They have just recently obtained FDA approval to start testing of a new drug on people. In all of the country they have only been able to come up with 10 people to join the study who have familial als - it is that rare. Basically everyone that we met with (with one exception) was a PhD and not an MD. This is definitely research and not treatment for mommy. Mommy is on the medication but we don't know whether it is the real test drug or a placebo. Don't know if we will ever know.

We got pretty physically tired out from the many hours of flying from Portland to Atlanta, hotel rooms, taxi's etc. The sitting hurt mommy's leg pretty bad and she is in pain like she never has been before. Two days later the pain has not gone away.

The other thing that was difficult from this weekend is facing more detailed information about the disease. While regular als has some wonderful (at least from our perspective now) statistics about life expectancy, familial als is not quite so good. The docs that we are working with, who have seen a lot more familial als than most, pretty much said that life expectancy from first symptoms is 10-14 months with just about no one surviving past the 14 months. We are doing everything we can - which is mainly prayer and hope - to break those odds...

Yesterday we went to Home Depot to buy some handicapped accessibility supplies. Daddy is going to be putting up grab bars by the toilets for mommy and we also bought a shower chair as standing in the shower is getting pretty difficult. Daddy is also going to be installing a handheld shower head to help with showering. While we were at the hotel we were in a handicapped room and it had the entire bathroom tiled and no break going into the shower. There was a shower curtain to help control the water but any excess spray was safe because everything was tiled and sloped back to the shower drain. The thought of having to tear apart our recently remodeled (after the fire) bathroom is daunting but we may just have to do that. Anyone know any good tilers?

And finally for this post, something direct from daddy. Stupid things make me cry. Tonight at dinner mommy told me that I am going to have to take the girls to the Candlelighter's Mt. Hood Snowmobilers party this winter as she just can't walk in the snow and the wheel chair can't do it either. It was difficult thinking about doing something with the girls alone, without mommy, but I was doing okay with it. And then immediately after that we started watching "Little People Big World" (a show about some little people that live just a few miles from us.) During that show they actually went skiing to the same mountain where the snowmobiling party will be - coincidence? Anyway, on the show they were skiing where I used to be a competitive skier and we were talking to the girls about skiing. They both asked me to teach them to ski. And with that it hit me that I might be able to but it would have to be without mommy. She won't be able to ever share that with us and no matter how much we might in the future have fun doing something (like skiing) as father/daughters, we won't be doing it as "a family" as mommy won't be there. We maybe able to be father/daughters, but I don't know how we will ever be a family anymore without mommy. Sarah asked me why I was crying and I could only ignore her question hoping I didn't really have to answer it.

Pray for the emotions, all of ours.

In Atlanta

Thank you Darlene for the prayers - you should have started earlier! It was quite an adventure getting here. We woke up late. Not sure if the alarm never went off or if Mommy shut it off in her sleep. Thankfully, we were only about 10 minutes later leaving home than we had planned. We got onto the flight, backed away from the terminal and stopped. A warning light had come on in the cockpit and they needed to have it checked out. We went back to the gate and the maintenance people looked at it and determined that we would not be able to fly as they wouldn't be able to maintain cabin pressure. So off the plane we went.

Then, we had to wait as they tried to rebook everyone on other flights. With already full flights scheduled and an entire plane full of passengers, it took quite some time. Finally an hour and a half later, they had booked us on another airline to Denver and then back to their airline for the trip from Denver to Atlanta. But we didn't have bording passes or seat assignments. Daddy had to go back out to the ticket counter to try to deal with that while Mommy waited at the gate. Even still, we had to wait for seat assignments because they wanted to move us forward, but couldn't until the passenger in the seat where they wanted to put us had checked in. We went and got some lunch and waited for the time to board. They did finally get us moved forward.

We landed in Atlanta a little before midnight Atlanta time. It should have been around 6:30pm if we had made our original flights. We were transported to the hotel and eventually made it to bed. I tried to remind myself that it wasn't that late West Coast time, so going to bed at 10pm Pacific wasn't bad, but getting up at 6am Eastern was a bit difficult.

We had breakfast at the hotel and then took a taxi to the hospital. We have met with the doc here and he has done some testing. Doc here agrees with the diagnosis - which really isn't any surprise. We have a full day of tests and procedues and are really just getting started. Then we need to be back tomorrow morning for a little bit more before heading home. Both of us are tired and fighting colds, but we're hanging in.

Off to Atlanta

We've been getting ready for our first trip to Atlanta. Mommy and Daddy will fly out tomorrow morning. We'll be travelling all day with one connection. The sitting with legs down and little room to shift positions will make it rough on Mommy. We've borrowed (indefinitely) a manual wheelchair. We'll take it with us so Mommy won't have to walk too much as well as the cane for when she is walking. It will make for interesting travels.

The girls will be with Grandma M, so they will be well taken care of.

Our friend Genia was here this past week to help out. We harvested quite a bit from the garden including 5 huge pumpkins. And we left two more pumpkins that weren't quite ripe in the garden. Mommy hopes to be able to work with the girls on making some pumpkin pie or pumpkin bread from one of the pumpkins and maybe even roasting some pumpkin seeds. We've been too busy the last few days, so it hasn't happened yet. It was great to see Genia and her help was tremendous. Thanks Genia!

Highs and Lows

It has been an interesting week with some big emotional and physical hits. But then those have been countered with some wonderful blessings bestowed upon us from above.

On Tuesday mommy and daddy went to the als clinic. We met lots of of new therapists and doc came and did an exam to find the current state of mommy's disease. The result of the day was that doc has prescribed a controlled pain medicine for her. It is a highly addictive medicine although he basically said "at this point we don't worry about that." Doc also wants her in leg braces when she is up and walking and in an electric wheel chair most of the time to conserve energy. One of the hardest emotional hits was his closing comment that she needs to spend the energy she has left only doing the things that she likes to do.

As we are dealing with the emotional issues we also have to deal with the financial. The leg braces run close to $1,000. The cost of an electric wheel chair is in the 25-30 thousand dollar range. Our insurance only covers $5,000 a year on these types of devices. Obviously we don't have any funds to cover the difference let alone a difference so great. Here is where God comes in. After sharing with daddy's sister the situation she shared with her pastor. The email exchange from her looked something like this:

"You two know that God works in amazing ways! I was talking to my pastor about your appointment on the 29th & how you will need a motorized wheelchair. He listened quietly & then asked if you have ordered one. I said no not yet. He smiled & began to tell me that his close friend just passed & that his wife still has all of his medical equipment- a fancy motorized wheelchair with a fancy lift seat as well as comm. Devices & other medical equipment. He is sure that the owner will help you with these needs and is going to speak to her!
Praise God!"

And a later email:

"I just heard from my pastor- all is a go- "she" [we want so much to give you her name but she has not authorized that and until we have permission we want to respect her privacy] has the wheelchair another possible skooter, the hospital type bed & some type of augment comm device! We are to let them know when you'd like them! Praise God!
He does provide for ALL of our needs!"

If the significance of this has not hit you hard as to how GREAT God is, please go back and read the paragraph above about how much these things cost and how insurance was basically not going to cover it! Only a true and caring God can answer prayers in this way.

This presented another problem as there is no access to our house for a wheelchair. There are steps leading up to the front door (which can and will be dealt with by building a ramp) but the existing sidewalk was too narrow, uneven and craked. Here is where yet again God shines. Daddy called Mike, a friend who does concrete work to ask for some advice on what to do and more importantly how to do it. After giving a little bit of direction on the phone daddy fearfully asked "how much will this cost?" The answer came "Do you trust me? Then I will have my guys come out next week some time and prep in the morning and have the concrete ordered for the afternoon. It will be taken care of." Oh my what another wonderful blessing. If you ever need a great concrete and general contractor in the Portland, Oregon area please let us know - We'll tell you all about this wonderful man!

Today daddy and friend Steve are going to spend the day tearing out what is there and leveling the ground to make it ready for the new sidewalk next week. We are going to be doing that with a new to us tractor that Grandpa made possible just this week and with the use of a Bobcat and other equipment donated by another good friend - thank you Grandpa and Doug! To top that off just yesterday another contract friend that helped us out splitting wood last weekend stopped by and just happened to mention that they have a jackhammer they bought for another job and have only used once and is sitting in their shop just up the road available for use - thank you to the Herbs! And to show how God works way ahead of time on things, another friend called us out of the blue this last summer and asked if we needed gravel. He delivered more gravel than we need and we have had extra sitting in a pile since then. That "extra" is going to be right about the amount we need to lay down under the new sidewalk - thank you Johnny! Yes, God does work through other people.

Again, if you have any question as to the ability of God to meet the needs of his people, please go back and read this post again. Our God IS An Awesome God!

Updates Are Getting Difficult

and we are afraid they are just going to get a bit more difficult as time goes on. This last week was a long one for all of us.

Let's start with some good things. The girls had a good week at school. Mommy and Daddy got to go to a "tea party" at Sarah's school. It was actually a grandparent tea day but since all of Sarah's grandparents are working during the day mommy and daddy got to go in their place. Sarah got to show us some of her current school projects and was happy that mommy and daddy were there.

Mommy and daddy also went to some doctors appointments for Rebekah and she is doing pretty good all around. One of the appointments we went to is a neuro-developmental psychologist. This doc basically oversees the general picture of how Rebekah is doing and coordinates a lot of the different specialists. She only sees Rebekah every 6-9 months and was THRILLED at how much progression Rebekah has made with speech, behavior, etc. From mommy and daddy's perspective there are small strides and lots of struggles, but from someone's perspective who doesn't see her every day she really is doing well.

Sunday after church some friends from church and elsewhere came over and helped for a few hours cutting, splitting and stacking wood for the winter. We have about 6 cords now ready to go and that should help with the electrical bills - something we really need as it gets colder. THANK YOU to all who helped.

Alson on Sunday "Mommy Debbie" walked in an als walk in honor of Frances. Here is Mommy-Debbie, her daughter-in-law Jessie and David, her "extra" son at the walk:

You can read more about it (and some other great stuff) at Debbie's Blog.


Mommy started the week with a nurse coming to the house to take blood as part of the enrollment in a medical trial in Atlanta, Georgia for familial als. Mid-week they called and mommy is now fully enrolled. In the next couple of weeks mommy and daddy are going to have to go to Atlanta for a few days. Not exactly a vacation but it will be some time away. This trial is not likely to be able to do anything for mommy but it may help others in the future.

Also this last week mommy had another diagnostic MRI. This test was more as a formality to make sure absolutely anything else that could be a factor in her diagnosis is ruled out. The doc was very clear to not get any hopes up that this might find something other than als, but we wouldn't have any problems with it if it did!!!

Last week brought us some continued degredation of mommy's abilities. Her walking is getting worse and she is often even using a cane inside the house now. She is not able to get out of a chair unless she can use her arms to pull herself up in some way. And while trying to do some cooking this week she has noticed that her strength in her arms/hands is getting worse. Using a spatula to chop up some ground beef browning in a pan was difficult as was holding some cheese in her hand to use a grater. Along with those specifics she is also just generally getting more and more tired, or said another way having less and less strength.

We continue to delight in every moment we have together and enjoy the little blessings very much as they come. Several times this week the girls have noticed mommy having a problem and really tried to step in and help her in any way they could. We really have been proud of them.

Please continue to pray for strength and comfort of both the physical and emotional kind. I don't think right now that I have the ability to address any of the emotional affects of the week but maybe soon in another post but rest assured they have been there too! We really can use your prayers and support right now.

(Please forgive any typos/poor edits as we are rushing to get out to the als clinic today with mommy and just don't have the time to go back and clean up this post right now.)

Telling The Girls

The girls went to Grandma A's house last night for the evening and mommy and daddy went to Benihana's for dinner with some close friends Pat and Steve. This morning Grandma C came out and spent A LOT of time cleaning which was a great help. About 10:30 Grandma A brought the girls home and they played in the play room most of the afternoon.

They played while mommy and daddy got up their final nerve to talk to them. Just before dinner we brought them into the living room and told them about mommy being sick. We started with what they already knew, mommy's leg, and that it was not going to be getting better. Rebekah kept saying "mommy go boo boo hospital." We told them that mommy has als so that they would have a name for it. Sarah kept trying to say that als (daddy has decided that als doesn't deserve capital letters) was cancer. Our family may be a bit odd, but a just-turned-five year old should not have to even know about cancer. Rebekah kept saying "scooter help mommy." At first we couldn't understand her as "scooter" is a new word for her but she explained herself very well saying "scooter in back of van."

We talked about how some people would say that mommy was sick and some people would be sad when they talked with us. Then we told them that as mommy got sicker they would have to help out. They both wanted to know what they could do to help out and we explained that they were getting to be big girls now so more cleaning and taking care of their own things would be in order - they didn't seem to be so keen on that. We also talked about how mommy can't get into their playroom when it is a mess so they will have to keep it more clean. Finally we let them ask any questions they had (they really didn't have any) and explained to them that they could always ask any questions they had or tell us anything they were feeling.

Quite honestly it was far more difficult for mommy and daddy than it was for them. Obviously they aren't old enough to grasp loosing mommy; but at least for a very short while they don't have to.

Happy Birthday Sarah

Yesterday mommy and daddy had a meeting with Rebekah's Psychologist hoping to get some ideas on how to talk to the girls about mommy's ALS. The good news is that we were already on the right track as to what we were thinking; the bad news is that we did not get any magical ideas to make it easy. We are not surprised but we did hope. We did get some good insight on kiddo perspective though. We will probably work on talking with them this weekend.

On a more wonderful front today is Sarah's 5th birthday! Happy birthday Sarah!!!

The Weekend

A lot has happened this weekend. "Cousins" Ann, Joe and JJ came out again to help us out around the house. They have parked their motorhome here and have come multiple times over the last few weeks to help with the cleaning, cooking, etc. JJ does a great job of playing with the girls and they like that a lot. Grandma A. came last night and picked up the girls about dinner time and took them to church this morning and brought them back this afternoon.

Daddy has spent the weekend proctoring examines for two separate Emergency Medical Technician (EMT) state exams. It was the last thing that he couldn't get off his calendar and he enjoys helping to make sure that the pre-hospital medical providers that we are putting out there to assist you are competent. And since we had help here at the house it didn't seem like too much to be away.

Even though she had help here mommy spent much of the weekend on her feet (with a 4 legged cane) trying to do things. Even getting laundry done, a bit of cleaning or organizing is a chore. Today, Sunday, with help she actually made it out to the garden (which we have been neglecting the last few weeks) and bags and bags of vegetables were brought back for dinner. Joe cooked us up some tomato/cucumber salad, fried zuchinni, corn and fresh green beans and it made a wonderful dinner. Ann and Joe even did all the dishes too - thanks guys!

Mommy is paying for the time up and about. Her leg and especially her foot are causing quite a bit of pain right now. While she could sit on the couch with the girls and read bed time stories, she could not get off the couch without great problem. Daddy had to do night time routines with the girls and get them in bed.

This week (Wednesday) we are going to meet with the behavioral psychologist with Rebekah and then hopefully alone to talk about telling the girls what is going on. Mommy Debbie is going to meet us at the hospital to help with Rebekah - Sarah will be in school. Pray for God's strength and wisdom on how to deal with this.

Finally, this week is Sarah's 5th birthday. Hopefully it will be a great one for all!

Friday Updates

Hope you all have had a good week.

This week has been a lot of whirl wind running around trying to figure out our future. We still are not sure when we are going to be telling the girls. We have an appointment at the ALS clinic in a couple of weeks and at that clinic we expect that they will have a lot of support staff that help with all of the end of life as well as medical issue type things. In addition we are meeting with Rebekah's behavioral psychologist next week and will talk with him. Between all of that we are hoping to get a grasp on the best way to share with them what will be happening in the all too near future.

In addition mommy has spent a lot of time looking at different medical trials that could be helpful. Unfortunately there are not any that offer real promise to us in our situation. We have decided on a trial in Georgia that focusses on familial ALS. She has made it through the pre-screening and they will be sending someone for blood and a physical exam. After that we will have to travel to Georgia (Atlanta) up to two times. It may not be something that can help us right now but hopefully, just hopefully it will help come up with something that will help others, including maybe even our girls or nephew.

It has been an emotional week as we start to have lots of conversations that no family ever wants to have. Thank you again very much for your continued thoughts and prayers as we know that is the only way that we are able to get through this.

Candlelighters Shines Again

We spent Labor Day weekend the same way we have for several years now, at Candlelighter's Family Camp just outside Eugene.

The girls had a wonderful time spending most of the weekend with their "buddies" (high school students that came to help out and give the parents a break.) If they were not with their buddies they were constantly asking for them. Rebekah kept saying "buddy come" and signing that she wanted a buddy. They really REALLY had a good time.

Sarah (almost 5) has her first "love," Alex. She has seen him at 3 camps now this summer and she couldn't wait to see him again. They informed us Saturday night that they got married and were going on their honeymoon to Sacramento?!?!?! They were taking toys, swimming suits and a couple of other things and wanted Alex's mommy and daddy to go with them. Alex's mommy was put in the odd position of having to dodge the question from Sarah as to why mommies and daddies couldn't go on your honemoon with you.

Early Monday morning we woke up to Rebekah complaining about their sleeping arrangements. They share an upper twin size bunk bed. Daddy was trying to deal with her and she was saying (to Daddy's ears) "Sarah pee'd on my sleeping bag." Daddy was not at all happy about having to deal with that but after a few times of her saying it mommy piped in and said "She is saying 'Sarah's FEET are on her sleeping bag.'" THAT was a lot easier to deal with! Although it then turned into an argument of "No they are not." "Yes they are." "That's not your sleeping bag." "Yes it is. etc... Loving sisters in action.

Mommy and daddy are on the camp comittee so they worked their tails off; for them camp was a lot of work. It takes a lot of planning and then execution to make a camp work for 300+ people and the comittee that existed this year did a beautiful job, even if we are a bit biased! Sunday night we made 580 donuts and that seemed to go over really well and we are glad.

Mommy spent most of the weekend on a scooter as she is just not able to get around. She was up out of it a few times and during those times she had a few falls; nothing hurt but not what we want. Getting up into the camping trailer is now extremely difficult for her. All of that being said, she had a good time serving the Candlelighter's families and seeing Rebekah and Sarah play until their heart's were content.

It is really difficult to think that something you are doing that you enjoy so much with your family will be the last time you do it. As you go throughout your days with your kiddos please think about that. No matter how trivial or repetitive the task, event, etc. please ask yourself "If this is the very last time I ever get to do this with my kids will we have made the best of it?" Hopefully it will help you enjoy each little thing that much more just like we are trying to do now.

Your continued prayers and support are very much appreciated as we continue along this path.

A late addition. A couple of really awesome professional photographers, Jamie Zanotti (Jaz Photography), and her friend/partner Kim (sorry I don't remember her last name) donated their time and abilities at Family Camp taking pictures of all of the families - THANK YOU JAMIE AND KIM!. They also grabbed a few candids like this one of mommy: