Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Thursday, January 28, 2010

Ups, Downs, Ups, Downs...

...repeat as necessary each hour of the day.

The morning started very early and daddy got a lot done in the office. Early morning times before the phones start and other people's emergencies take over his life are wonderful. Pandora provides the inspiration and the piles on the desk provide the work. While doing it this morning a few things came to mind:

We're thankful for:

a clean house, we mean really really clean. Every other Tuesday a wonderful family is paying for house cleaners to come and spend a few hours here.

Food. Good food and lots of it. Our awesome church family has been providing a few meals each week and it is such a huge relief to be able to just throw something in the oven or microwave and not have to fuss over "what's for dinner?"

Our Wednesday morning sweetheart who drops by with a bag of breakfast goodies and fruit every Wednesday morning like clock work. You ARE so wonderful.

Rebekah's bus driver. She has made the bus trips so fun that every night when it comes time to "tell Jesus what we are thankful for" the very first thing Rebekah says is "my school bus." Thank you for helping Rebekah buckle and unbuckle out of her car seat as mommy is not able to get up in the bus anymore and do it.

Clean dishes and laundry. Another wonderful awesome friend came Monday and helped mommy do some dishes and laundry. We can't tell you how much these things make a difference as mommy can still do a lot of things, she just can't do a lot. All of her energy gets used up so easily with just moving from here to there. And all of daddy's is spent dealing with long days in the office and the emotions that entails.

Little girls who, despite being little girls and sisters, listen well and love each other even better.

The co-worker of daddy's (another adoption attorney) who calls at least once a week "for no reason" just to make sure things are okay and give him someone to talk to.

Kleenex. 'Nuff said.

Costco's return policy. So many things have been backing up here that we needed to return and Costco took it all back yesterday, even though we only had receipts for some of it and much time had passed on other items.

Study medicine. Mommy is with us and somewhat able to walk and still do things with us. This was actually not expected back in September when we first found out about her familial ALS. We don't know how much more time she will have but we are SO thankful for every waking (walking) moment.

And yes, that kind of brings us through a cycle. Another good friend has turned us on to It's kind of a "Make-A-Wish" for adults. She sent us the info on it months ago and being in some sort of a self-protecting mode daddy promptly ignored it until today. Today the info was re-sent to us and both mommy and daddy took a lot at it. Unfortunately we probably qualify and that brought daddy to tears as it brought about the thoughts of being without mommy. Not being able to make it through the application daddy printed it out and took it to mommy. The second she saw it she started crying (again.) She told daddy that she too had started into it earlier and couldn't make it through the application because of her tears so she put it away, also putting away the tears that came with it. Even if only for a while - until daddy brought them back with the application.

Mommy can't carry things now. Just trying to walk at all with the cane or walker is difficult and if she has anything in her hand, no matter how light, her balance is way off and she will fall. It became apparent the other evening that while she can stand at the stove (with help) she can't take the pot of water and pasta the two steps over to the sink to drain it. Last night while out we couldn't find a handicapped spot and the related ramp so mommy had to step up a curb. Something we all take for granted like one step up a curb was a problem and daddy had to help. We are about at the point where the office door (two steps) is not going to work anymore. Abilities are slipping away, slowly maybe but definitely slipping away.

It's time for more furniture moving. Mommy still wants to get to a desk to handle medical bills, make calls, etc. and she can't the way things are right now. Mommy also needs to be able to get her wheelchair all the way into the bedroom and daddy's dresser is in the way of that. Some furniture is going to have to go just to open things up. And the bathroom, well, the shower is becoming more and more difficult and it looks like we are going to have to gut that and just tile everything, making an open shower where she can wheel into it. So many changes. Ugh.

And when at the bottom of the cycle we need only think about how with each and every little thing put in front of us there is a way around, over, or under it and back up again we go. God is so true when He says that He will provide and that We will not have something thrust upon us that we are not able to bear. We are thankful to God who has, thus far, brought us to a point of deep love for each other and for two beautiful little ladies who are SO extra special each in their own way. It may not be bedtime, but it is definitely time again to "Tell Jesus what we are thankful for..."

6 Shared:

At Thursday, January 28, 2010 4:53:00 PM, Blogger Becky Left a thought...

Our offer still stands to do give you guys a family picture taking session. It's totally fine if you don't want to do it. But my friend and I would love to do that for you guys. Some of her non-people work is on

Thanks for the updates. We have been praying for you all.

At Thursday, January 28, 2010 9:38:00 PM, Blogger Trwaldo1 Left a thought...

You guys are an inspiration to all, showing how to "go" with the roller-coaster of life, amazing...I doubt I'd do so well! We LOVE ya and we're praying!

At Friday, January 29, 2010 11:20:00 AM, Anonymous Anonymous Left a thought...

I am so thankful for both of you. You inspire me each day with your courage and faith in God. My prayers & thoughts continue to be with you and your sweet little ladies.
Aunt Annie

At Friday, January 29, 2010 4:51:00 PM, Blogger Deb Left a thought...

Sending hugs and lots of loving prayers! ...knowing that God is holding you close brings me comfort...and I'm continually amazed at your unending faith in Him.

At Friday, January 29, 2010 11:00:00 PM, Anonymous Anonymous Left a thought...

Thank you for sharing and allowing us to see an inside view of your day. Thank you.==Teresa Mathia

At Sunday, January 31, 2010 10:56:00 AM, Blogger The other me Left a thought...

What a sad time for you and yet again, your family is such an example to us all. I think of your family often and pray for miracles. I was just readinag another blog and was reminded of the issues you had trying to help Rebekah with her speech, this family has a great new tool, wondered if you could use it with Rebekah
Much love from England.


Post a Comment

Thank you from Rebekah...

Back to Rebekahs home page...