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, May 22, 2008

Rebekah Needs To Tango

We met with Rebekah's IEP team yesterday to discuss 2 things: the results and future of her mental retardation testing, and her speech/communication needs. The two topics became inseperable as her biggest need is to be able to communicate. Even though her IQ tests come in at just under 50 (thank you radiation to the brain), her comprehension testing is at a reasonably high level - that of a 3 1/2 year old. Unfortunately her ability to express is way behind. In an effort to try and help that we introduce the Tango:

More Info At:

For the past several months Rebekah has been undergoing a trial/test period to see if this device would work for her. The testing involved whether any communicative device would be helpful, and if so, whether this was the right one. The good news is that right at the end of the trial period she "Got It" and really started to grow and be able to use it, expressing things she can't in other ways.

And that is also the bad news. Now that she is at the end of the trial period they take it away. The local special ed district that is helping so much with Rebekah only has one to share between all the potential needs and it is given by the company as a trial. In order to obtain one for Rebekah we need to buy one - at $7,000.00!

The first choice (of the district) is that the parents pay for it out of pocket. Obviously that is not a valid choice for most parents of special needs kiddos. So we then get into the second option and that is looking for outside funding. We are looking into options that include insurance, grants, school district funds, etc. With her diagnosis and the objective (as well as subjective)test results, the communications device qualifies as a "medical neeed." But that still only gives a slight hope for insurance coverage and even then it would only be partial coverage. And of course, trying to pursue all the available options takes time and she doesn't get to keep the one she has while that time plays out. What is really frustrating is that she qualifies for and is getting "extended school year" because she has demonstrated that she will loose ground if she doesn't have continuous exposure to her educational programs - but then they go and take this away and say "Sorry. If it takes a while to get one, hopefully she'll be able to pick it back up whenever you finally do."

SO - if you know of any grants, businesses, etc. that just happen to have $7,000.00 to go to the needs of a special little girl, let us know. Otherwise, please help us and pray that God opens up an avenue to make this possible. Even if we don't, HE does know where the funds can come from.

On a different note, the girls went into daddy's office the other day to show off their pretty dresses. Sarah has a new question, "Do I look pretty daddy?" She asks it all the time. And Rebekah models after her with, "I pretty too." It just melts your heart. Here are daddy's pretty girls that morning:


Sunday, May 18, 2008

Rebekah Makes Daddy Cry / New House

We are sorry for not providing more updates more often. Words cannot say how much we are burning the candle at both ends.

Most important to tell are some very special words from Rebekah that brought daddy to tears today in church. We were in worship time singing praise choruses. One of those choruses had the line "And You died and rose again." Rebekah was in daddy's arms and was singing along up to that point. Rebekah's idea of singing is "blah blah blah blah blah blah..." When we sang "And You died and rose again." Rebekah stopped saying blah blah blah and looked daddy right in the eyes and said "Daddy, I not dead anymore!" Daddy broke into tears.

For those of you who might be new to this blog those words from her mouth were SO much more than spiritually true. Less than 3 years ago Rebekah crashed on the operating table during one of her surgeries and had to be revived. We talk about it every now and then (how often can something like that come up???) but never had any clue that Rebekah remembered or comprehended what happened. Apparently she does. She followed up "I not dead anymore" with something like saying she was here with daddy now. She didn't say it but the impression daddy got was that she actually remembered not being here, and maybe being with Jesus?

That's the heavy. Let us share some significant changes in our life over the last 5 months. In literally 5 months and one week we went from this:

to this:

We are delighted.

Pray for the things that we need to do in order to get the rental house ready to turn back over to the landlord as well as somehow figuring out how we are going to get all this stuff unpacked!


Thursday, May 08, 2008

We are sleeping at the "All Better" House

We were finally given the "keys" to the all better house. Last week, we had our "stuff" that was cleaned after the fire (or at least most of it) delivered and we had our new appliances installed. That meant that we could think about moving in. So we decided to do that Monday evening. We moved the beds and some "essentials" and continue to work on unpacking boxes at the all better house and packing boxes at the rental house. This coming Monday will be the big "move out of the rental house" day, so we have to get everything packed and ready to move.

We are living in limbo with a house full of boxes and not sure where anything is, but it is coming together slowwwwwwly.

The girls each spent two weeks on antibiotics and had some ups and downs. Both missed some school and both had bouts of diarhea. Now that we are back home, they are sharing a bedroom again. They are both excited about being "home" and about sleeping with sister.

The girls continue to check on their plants to see if they are growing. Two of the 4 boxes are growing so far and we keep watching for the other two. The Sunflowers they planted are growing, too. And one of the trees seems to have some new growth. Now to get them to the all better house...

It feels good to be HOME and together a little more. Now we just need to get the rest of our stuff here and unpacked and be able to have more quality family time.