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.

Sunday, September 28, 2008

Getting Used to the School Routine

We are getting used to the new school routine. Both girls are pretty tired by the end of the school day. Dinner time has been moved a little earlier so the girls can get to bed sooner.

Rebekah spends part of her school day in the first grade classroom and part of the day in the special ed classroom with 3 kindergarteners. She does a good job of listening. She has an occasional outburst, but seems to be much better than last year. Some of it is probably due to her being more mature and some may be because of her medication. She can be very compasionate, helping the kinders come to circle when it is time or waiting patiently while they make their way. She gets to be in her first grade class at the beginning of the day for greeting time and learn about what is happening for the day. She has music, pe and library as well as lunch and recess with her first grade class, too. She is also in an adaptive PE class where she focuses on the skills that the physical therapist wants her to work on. She does some academics in the special ed class and some in the first grade class. It seems to be working well for her.

Rebekah came home the other day with a picture that her friend had drawn for her. It showed her and her friend. It was drawn that day, because in the picture Rebekah was wearing the shirt she wore that day. It was interesting to me that her friend had drawn Rebekah's hair shorter on the left side than on the right (which is accurate). It reminds me how observant kids her age can be.

Our insurance company denied coverage for the Tango - the speech generating device. Their policy specifically excludes them. We are working on putting together an appeal. We don't know if that will work, or not, but we are going to give it a shot. We may have to look at other funding possibilities if this doesn't work. So, please continue to keep this in your prayers.

Sarah enjoys school. She goes three full days - Monday, Wednesday and Friday. She has her special speech class on Wednesday mornings, so she misses the first hour and a half of preschool. She is at a christian school, so she is learning more about God, too, which is great. She comes home singing new songs she has learned and talking (if we can get her to) about things she learned. Most of the time she tells me she can't remember what she learned. But then, she's my girl that when I asked her who taught her something she tells me "I just always knew it." She has a boy in her class that is seriously allergic to peanuts, so they have asked to make the classroom nut free. So no peanut better and jelly sandwiches at school. She will have to have those on "stay home" days.

Sarah celebrated her birthday a week and a half ago. She turned 4. Her birthday was on a Wednesday, so she got to take treats to both her speech class and preschool. She was very excited. We celebrated her birthday with family last weekend. She decided that she wanted a castle birthday cake, so Mommy made her a castle birthday cake. And we had Cinderella plates and napkins, so it was a "princess" party. She had a great time and got some clothes for school and some "princess" towels and books, among other things.

Shortly after Rebekah comes home from school, she needs to wear her eye patch for two hours. She usually grumbles about it, but it has to be done. The last few days, she has been doing much better about it.

We were able to get Rebekah started back on Horse Therapy riding. She started again this past Tuesday. Once a week, she will get to do that. She seemed to enjoy it and was able to do many of the things she had been doing in December when we stopped. This week, she will ride a different horse. The horse she has been riding (Butter) will follow the instructor regardless of how Rebekah steers. The new horse will follow Rebekah's lead more, so Rebekah will have to work harder to keep the horse doing what she wants. It will be interesting to see how she does.

The girls wanted a clock in their room, so we got a clock that projects the time onto the ceiling. We've been working with them on telling time (at least what hour it is). On school days, they get up when the first number is a 6 and if it isn't a school day the first number needs to be a 7 or an 8. We are also working on AM vs PM. It is also an alarm clock and they decided that they wanted the alarm to wake them up instead of Mommy. It is really funny to hear them on a Saturday morning at 6:45 or so talking to each other and saying "the first number isn't a 7, so it isn't time to get up". Other days, I can hear Sarah saying "it has been 6 a long, long time". Then, she'll come out of the room at 6:59 to go potty and tell mommy "it isn't a 7, yet, but I need to go potty". Yesterday, however, they woke up around 5:50. They weren't able to stay in their bedroom for too long and they weren't about to go back to sleep. Today, I had to wake them up a little after 8, so we could get up and ready for church. Some days they wake up early and surprise me because I thought the needed more sleep and other days they sleep in and I figured they would be up early.


Tuesday, September 23, 2008

In Loving Memory:
Austin Winters (September 18th 2008)
A Very Short 10 Years

Austin was one of the honored children, along with Rebekah, for this year's Candlelighters Ride For A Child fundraser. The ride finished on September 13th, Austin died 5 days later. From Austin's local paper: An artist and friend met with Austin 3 days before his death: "The boy drifted in and out, but roused himself for a 20-minute conversation about heaven. Together, they dreamed of a place with sunny skies and plenty of open roads to ride motorcycles. This heavenly place, they decided, has no laws against speeding and bikers don't have to wear helmets." Read the whole story here.

It is very difficult for all of us who have similarly situated children. On one hand it slams our childrens' issues into our faces. It makes us face the fact that the odds are greater than not that we will have to deal with this too; we don't know if it will be tomorrow, next week, next month, or ??? It makes us do things parents should never EVER have to do like thing about their own child's funeral. And then on the other hand it makes us realize how lucky and special we are that we get one more day with our kiddo.

Either way we feel guilty. We feel guilty for rejoicing when there are others experiencing such loss. And we feel guilty for feeling "bad" when we still are blessed with the life of our little one.

As has often been said, it is not right, IT IS JUST NOT RIGHT.

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.



Sunday, September 07, 2008

Ride For A Child

Today 50 riders and their support crews start out on a week long ride to help support our local Candlelighters. See the 8 "honored kids" including Rebekah at their website: ( These riders are part of thousands of riders that will be touring NE Oregon until next Saturday. They have been sending Rebekah postcards on and off throughout the summer that she LOVES getting. Hopefully they will be sending them daily from the places they are on their ride. Daddy helped as part of the support team on this ride last year but it didn't work out for him to do so this year but we do know lots of the people that are there. Please keep them in your prayers as the week goes along. Hopefully they will provide us some updates.


Friday, September 05, 2008

Stand Up For cancer

(It doesn't deserve a capital "C")

We don't know how many of you east of here watched this already but it is just starting here. We are not sure we are going to be able to watch it through.

Our local news story did a 30 minute story on local cancer here that was hard hitting, direct and addressed our friends, our treatment centers, our docs, etc. It was actually difficult to watch.

cancer SUCKS! Our life, like so many others, was turned upside down 3 years ago. We don't even remember life pre-April 15th 2005 anymore. We don't remember what it was like to have a "normal" little Rebekah. cancer SUCKS!

For any of you that watched the show and were touched thank you. For any of you that donated, Thank You. And for any of you that were lead to prayer, THANK YOU! We do pray that no one else would ever have to go through what Rebekah has. We know some will, but we pray for the day that no one ever does anymore.