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.

Monday, May 24, 2010

Mommy Hospital Day

Today mommy has appointments that will take the whole day - literally from 9 to 5 - at two different hospitals and with many different doctors. We will be seeing a vascular surgeon to see if there is anything that can be done about the lack of circulation in her legs as well as a variety of other doctors to rate the progress of the disease and to see what, if any, things can be done to help make her more comfortable. These "clinic" days are always difficult emotionally as the testing gives clear, specific observations as to how bad things have gotten since the last time we were there.


Sunday, May 23, 2010

Where Does All That Puke Go?

"Daddy I threw up." These are words I am beginning to hate. I mean nobody likes them but I hate them, after hearing them more than once in the last few days.

This time Rebekah was crying in bed. After giving her time to cry herself back to sleep and it not happening I went into her bedroom. As I walked in and told her she needed to go back to sleep, through her tears she says "Daddy I threw up." She said it in a voice that only a Rebekah parent could understand - the translation being assisted by the smell. There she was crying, and lying in a huge pile of puke.

Off to the shower we went as she was covered from head to toe. Then I left her on the couch with a puke bucket while I went to attack the bed. After spending 20 minutes trying to find the extra mattress cover (that was washed two nights ago as we went through this with Sarah) I started to get her bed made. I only had to stop a couple of times to throw up myself.

Once it was made I started to put back in bed and she starred all over again. Quick, off to the bathroom again. At least this time she mostly hit the bucket. After an hour or so on the couch she is back to bed.

In the middle of all of this mommy got up and had to go potty which requires my intervention as well. So here I am at 2:45am tucking two of my three girls into bed. Thankful that at least Sarah stayed in bed (though not asleep) through all of this.

Now I lay in bed wondering where all that puke goes in the washing machine???

(Cross posted here and to my FB page, in the middle of the night, from my phone. Please forgive the mistakes.)


Wednesday, May 12, 2010

Teeth Lost, Shoes Tied, Growing Up

A couple of weeks ago, Sarah lost her first tooth. She had been complaining that her top two front teeth had been hit at school and were loose and hurting. Then one day, she realized that one of the bottom teeth was really loose and that was what was hurting. A week later, it was very loose. She was sitting in Daddy's lap and talking about how loose it was. Daddy wanted to see. Sarah moved the tooth so much that it was pointing toward her bottom lip. Daddy told her that she should be able to pull it right out. She didn't want anything to do with that and ran to Mommy. Mommy looked at it and told her that she should be able to pull it right out. She let Mommy twist it once and then complained that it hurt. Mommy told her that she wouldn't be able to have dinner until it was out - it was already starting to bleed and it would come out when she tried to eat. She needed a tissue to help her pull on it and she got it out really quick. She had a shocked look on her face, looked at the tooth in the tissue, handed the tissue to Mommy and ran to the bathroom to look at her hole in the mirror. Rebekah ran quick to get an envelope for Sarah's tooth. (Don't know how it started, but lost teeth go in an envelope under the pillow at our house.) Sarah put her tooth in the envelope, wrote her name on the envelope and put it under her pillow.

Yesterday morning, while Rebekah was sitting and having breakfast, she was wiggling her loose tooth. It started bleeding and I knew it was ready to come out. She asked for a tissue so she could pull it out. Apparently, since Sarah used a tissue to pull her tooth out, Rebekah wanted a tissue to pull hers out. Rebekah was a little upset that she wasn't going to get a tooth necklace at school. But she ran excitedly to show Daddy her missing tooth. At school, they went to the office to get a "lost tooth club" sticker and a tooth necklace. With the news from the dentist last month that the adult teeth have no roots, Mommy and Daddy find it a little sad that she has lost the tooth. We don't really know what exactly to expect with regard to her teeth. We just know it likely isn't good.

On Mothers Day, the girls decided that they needed to make Mommy breakfast in bed. So with Daddy's help they made Mommy waffles with strawberries and powdered sugar and a glass of milk. They were so happy and proud. They brought them to Mommy along with some Mothers Day cards. It was very special to Mommy!

Later in the day, Sarah wanted to go outside and wanted to wear "tie" shoes. Mommy told her that if she could tie them then she could wear them. She sat down, put them on and tied them herself. She did a really good job. We were working on tying shoes a while back, but she didn't have a lot of patience for it. She surprised Mommy with actually getting it done. She was so excited and proud about that. She wanted to wear "tie" shoes to school on Monday, too, so she could show all of her friends.

Both girls are growing up! It is fun to watch, especially when they are making big strides. Some of it is sad, like knowing that Rebekah will struggle with her teeth. But at the same time, we are thankful that she is alive and cancer free. There are so many kids who have lost their battles or are deep in the middle of a battle or near the end of a battle. Our hearts break for each one of them. It reminds us of how precious life is. We need to live each day to its fullest.

We had some friends from Northwest Adoptive Families Association (NAFA) come out on Saturday with some vegetables, herbs, and flowers to plant along with some pots, a planting system and soil . Mommy and the girls got to help them. We are putting together a little bit of a garden on the back deck, so Mommy can get some veggies and herbs herself. They also brought out some picnic lunch for us. Thanks so much Andrea and Joni for coming to help and to the rest of you who contributed to the "garden party"!

Grandpa came out Saturday as well to help plant the garden. He did much of the planting himself. Thank you so much Grandpa. Daddy, with some help from Grandpa on Saturday and Uncle Chuck, Cole, Rebekah & Sarah on Sunday, worked on getting a watering system in place for the garden (and the deck garden). Aunt Molly and Grandma M helped with a little more of the "deck garden". Thanks to everyone for the help! We can't wait to enjoy the bounty!

Mommy was able to get out in the yard in the scooter. She was able to get to the scooter from the wheelchair (with a little help) and then was able to get around outside with the scooter. (The scooter is better for getting around in rough terrain and keeping it outside and the wheelchair inside will help keep the dirt from coming into the house.) It has been a while since Mommy used the scooter, so we have to work out some of the kinks. It looks like it will be possible to use the scooter without too much hassle (at least for now), so that will make things a little more flexible for spending time outdoors around home.

Each day can be different than the last. We just have to take things as they come and deal with the "issues" of the moment. One step at a time, one day at a time, one crisis at a time.


Sunday, May 02, 2010

A Glimpse Into A Day In Our Life

With some minor edits here is what I (daddy) just posted over on facebook. Although it is not the normal style for how we write here on the blog, after writing it there I figured it would work. Mommy has not reviewed this so I hope I'm not in too much trouble when she reads it here tomorrow.

Overall it was a pretty good day w some low lows.

First an update on mommy. You might not know it unless you specifically watch her outside of her home environment or pay close attention to what she does or doesn't do, but the ALS has completely taken her left leg out and pretty much desimated (80-90%) her right leg and left arm. She can still do things with her right arm but that to is quickly diminishing. After the extremeties it will shut off her core body mechanisms including breathing. She already does not have enough diaphram/stomach muscles to cough productively.

We started the day w a shower which takes about 45-60 minutes. She is in a wheelchair designed for the shower and she uses her right hand to control the spray nozzle and do most of the scrubbing. She needs help transfering to and from the shower chair, drying, cleaning up the shower, etc.

We then went to church and had a good morning although very few people were at church. 2 of the 3 people that were signed up to bring meals for the week were not there and the one that was didn't bring or say anything. (One of the two that was gone called this afternoon and is bringing over a meal tomorrow.) As is often the case, people want to help but when it comes time they end up being too busy or just forget. It's understandable and as small as it is, our church family is taxed doing the things for us that they do. We just wish we could get busy enough to forget about everything sometimes!

After church we had a gourmet meal at taco bell and then a short shopping trip to home depot. While at HD mommy needed to use the restroom. Using the toilet outside of the house where her toilet is much higher than normal is usually a big problem. She can get out of her chair and onto the toilet but often has trouble getting back. After about 20 minutes she called me exhausted and in tears. She had been trying and even with her transfer board she couldn't get back to her chair. As I say outside the restroom for a lom time I knew it had been too long and was getting worried. I had to go find a female employee to try and help as the restroom was constantly packed w other women. That employee couldn't help her and finally cleared the restroom so I could get in and help.

After leaving HD we went way across town to a photo studio. Grandma M had been given a gift certificate there and wanted to use it for extended family photographs. We met aunt, uncle, cousin and grandma there and had more than an hour of time. The kids did really well with posing. It was not too bad getting mommy out of her wheelchair and into a regular chair for photos and that was nice. Getting back was a bit more difficult but we managed. Toileting at the studio was again a problem. Although wonderfully private and large, getting her back into her chair was a painful experience for me and bad for her (she was in tears) because she couldn't help me help her - she was just too tired.

After the studio was a family dinner at Olive Garden. Thank you to grandma and to the wonderful person who gave us some gift cards so we could afford to eat out! Then we were home and working to get all the girls to bed. As I lay here alone in my bed I, as I often do, have mixed emotions about the day. I hate just about every part of what we go through every day right now. But at the same time I am SO grateful for and cherish every hour that we have together as a family.

If you've read this far you really must not have much else to do! I don't know if you reading it has helped you at all but I feel a bit better, not for having written it but for it having been written down.