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, July 16, 2007

Catching Up

It's hard to write every day (or every other day even) as we really don't feel like there is that much going on. And then we put together emotional ramblings like these - be warned.

Last week the heat was up to 110 degrees here. Without air conditioning that gets hot, especially in the girls' playroom that gets much of the sun! We think that is contributing to some of the behavioral difficulties both the kids and mommy and daddy have been dealing with. We are working on that and have received several quotes from several different contractors. After the first quote we figured there was something wrong with the company. Then we got another and it was about the same. Talk about sticker shock. We are still trying a few things and have a few avenues we are pursuing but we are not sure how that is going to work out.

Today mommy took Rebekah to speech therapy. When they started therapy some contractors started on the building with jack hammers. It was so loud that it was hurting Rebekah's ears. After being warned by the audiologist and the ENT that she is susceptible to damage from just such loud noises that was just not going to happen. Mommy packed her up and they left. The came back to their aunt and cousins for some play time before going back to the city for physical therapy. It was a good time with the cousins!

Over the weekend we had some really high highs and some very low lows. We got to go to Grandpa and Grandma's for a small family gathering. Aunt TT and the girls cousins were there as were some family friends who have a couple of kiddos just a few years older than Rebekah. Grandpa and Grandma have a huge house with a huge yard and lots of play areas. All of the kids took great advantage of that. Grandpa made some wonderful steaks on the grill and we had fresh berries for dessert. It was spectacular food, friends and family and it was wonderful to get together.

At the same time daddy had some really difficult emotional observations. Rebekah wants SO much to play with the other kids and to be included. She can't keep up with them when they are running and she is left behind. Rebekah was repeatedly trying to ask the other kids (both the older ones and her little cousins who are a year younger than her)to wait for her when they were running around, or "come" to her when they would leave her behind. Mommy and daddy knew what she was saying but no one else did and obviously the kids didn't have any time to pay her any attention no matter how much she tried.

When the kids were indoors they were running up and down stairs and rough housing. Generally just being kids and having a great time at it. Again Rebekah wanted to be involved and tried really hard to do what they were doing. But because of Rebekah's balance (or lack thereof) and fragility she couldn't handle being bumped, pushed or generally deal with the rough housing. She was knocked down and getting hurt. Once things started back outside again Rebekah still wanted to go play outside like the other kids and we took her out, but even with adult supervision the steps, gravel, concrete slopes of the yard etc. that were nothing to the other kids proved to be too much and she fell down and cut up her knee and elbow pretty bad and then spent the rest of the night screaming and crying in mommy's arms.

It's really hard for a daddy to sit back and watch his little girl, who should be so much more advanced than she is, want to play with other kids and not be able to keep up; trying to tell them she wants to play with them just to have them run away from her having fun doing all the things kiddos do without her; and to want to be accepted by the other kids but being repeatedly ignored as she tried to be like them and try to communicate with them and them not understand her. Adults are willing and able to try and understand her despite her difficulties and Rebekah likes communicating with them. But kids are who she would really like to play and communicate with and they just don't have the ability or attention span to deal with her. It's not their fault in any way at all, but it is still painful to Rebekah and very painful for mommy and daddy to watch.

By the end of the evening we were so blessed and uplifted to be with our friends and family and yet so emotionally drained and hurt watching Rebekah's inability to be "normal." And then, as if that were not enough, daddy got back to the computer and checked into one of the groups he belongs to and there was a conversation going on in which someone made the comment that someone else was "so stupid they should be wearing the colored helmet and riding the short bus." They had no way of knowing about Rebekah or how hurtful such a comment could be... Especially after the day that we had, daddy was particularly sensitive. We sometimes just don't know how what we are saying is going to affect other people but maybe we should think about it a bit. And adding to the pain is the fact that you really can't share parental feeling like this with just anyone so they sit and build up; it's not like you can pick up the phone and call the few friends you still have left after this whole ordeal and say "let me tell you how much it hurts to watch my daughter not being able to be 'normal'." I guess thats why you all get it here.

Thank you for letting us vent. Please pray for strength (and cooler weather) to make it through the rougher times!

4 Shared:

At Tuesday, July 17, 2007 12:47:00 AM, Anonymous Anonymous Left a thought...

:( Praying for you guys and Rebekah. That's so tough. You're vent is safe here and we hear and God hears. I'll lift you up tonight and pray God's hands comfort you.
~Thinking of you and Praying for you.

At Tuesday, July 17, 2007 1:41:00 PM, Anonymous Melenie Left a thought...

It was so good to see both of you at the Candlelighters lunch (was it last week?). It is comforting in a way that other families are struggling with similar issues. (Some how that sounds bad but I think you know what we mean) Kennedy too has a difficult time playing with peers. She is slower, she has balance issues, she falls frequently and they just continue playing or leave her behind. She wants so desperately to be just like everyone else but she speaks slower (it takes longer for her to formulate a response so sometimes she comments about "old" conversations), she is not coordinated so some games are difficult if not impossible and socially she is behind from having spent so long in a hospital away from other children her age. Some days I feel like she is the only one...

We are always thinking of you guys and checking in and praying. You and your family are in our hearts. We would LOVE to get together.


At Wednesday, July 18, 2007 8:20:00 PM, Anonymous Pamela Earley Left a thought...

Haven't posted in a while, but still check in almost daily.

My parental heart just aches for you as you witness your child being unhappy - nothing tears at your heart more.

While I am half way across the country and can't physically do anything to help, know that you are loved and prayed for here in Georgia.

At Friday, August 03, 2007 9:16:00 PM, Anonymous casual friday everyday Left a thought...

Have y'all been able to get a/c? That has to be really rough.

I hope this doesn't come off the wrong way as I'm in no way suggesting I know how you feel.

But, I did want to share that I understand your hurt when you see your little one being left behind and so much wanting to play with the other kids.

My son is socially awkward and other kids pick up on that. He hardly speaks (although he did finally say his first sentence last week! he is 3) and it has been mentioned to us that he might be on the austism spectrum.

I know it isnt the children's fault, but it does crush a parent to see their little one so badly want to fit in and be with kids, but either be too weak to do so (as with your sweet little one) or don't know how.

I found your blog through 5 minutes for mom. I was reading through all the blogs that they are praying for the kids but something has really drawn me to you and your family.

I'm praying for you and want to extend my support should you ever need it.



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