Tuesday, October 11, 2011

If you give a mouse a cookie..... You get a money pit.

Four years ago Bobby and I were blessed with an accomplishment not many couples achieve in their 20s. We became 1st time homeowners. We were over the moon. We were a small family with a 2 and 3 year old boys and it was a small 3 bedroom 1 bath house so it worked. The little old man aptly named Mr. Shorty was the nicest man to sell us this house, even lowering the price so we could afford the payments. I cried. It was wonderful.

Then life kicked us where the sun don't shine and I'm not talking butts. The house is block with s crawl space. There was four feet of mud under the two feet of standing water under the house. After Bobby got the water out and mud dried up, the floors started being bouncy. Soon after walls started cracking, and the black mold showed up in bathroom and our bedroom. We suspended the TV from the rafters in the attic, we painted over or hung paintings over the cracks and sprayed bleach on the mold. We told ourselves that when we had the money and time we would get around to it and fix the things that needed to be mended. Then came the diagnosis and with it the knowledge that this wasn't working. See here's the deal, Chloe has a gait trainer now to help her get around. But the house isn't open so she's limited to our small living room. But there's carpet so she can't roll. Then there is the space issue, there is no closet in Chloe's room, the boys closet is literally 3inches deep (no one believes me until they measure), there is only one bathroom, eventually Chloe will need a wheel chair, and other aides. I just want something that will fit our needs, both now and in the future. Now here's the kicker, Chloe is already having seizures, we know that they are brought on my several things but one of them is stress. Wanna guess what a house renovation is. Plus studies show that stress can make the regression worse. And with our house if you tear up the floors in one room you have to do the other rooms, if you fiz the walls in one room you have to get the others fix, then you don't want that work to get ruined my the holes in the roof.... Well if you give a mouse a cookie.....
So what's the plan? Glad you asked, I have no freaking clue. But this is the plan so far, we are having fund raiders to get the materials to fix the house. Once we have that money acquired then my plan is to look into either A. Seeing if we cam get a loan to buy another house and after we fix up this house rent it out. Or B. Move into a rental until we can fix and sell our house then buy another. Which ever way, this is why we are going to be having a booth at the Garden City Fall Festival. You can get bumper stickers, window clings, fudge, cakes, bracelets, your face painted, and your nails done and a clip in purple hair extention. You'll learn more about Retts, our house, and Chloe. I refuse to give up and go quietly into that good night. I'll beg, borrow and guilt, until Chloe has a home she can get around in.

Monday, October 10, 2011

Best of times, worst of times

This weekend we took Chloe to the first annual Georgia Strollathon for the International Rett Syndrome Foundation.  It was a very nice day for a stroll and we were able to meet several families that are battling with Rett's.  This was the first time were privileged to meet other Rett girls eye to eye.  It was an educational, sobering and quite frankly a scary time.

I'm happy to announce that the teams that participated in this years strollathon in GA collectively raised $26,000 for research toward finding a cure.  Some of you were a part of that success and I thank you.  We are very hopeful for a cure, especially due to some great breakthroughs recently.  Rett Syndrome is well on its way to becoming the first ever reversible neurological disorder.  Can I get a WOOT! WOOT!?  Even if you're not the kind to give a WOOT! you can certainly be the kind that clicks the donate button on the right.  Right now donations are going to Chloe's wish list needs, soon we will have a way to donate directly to research in her name as well.  Baby steps.  If you're broke like we are and all you can offer is prayer and encouragement those are worth more than pure gold and are more productive as well.  If we have nothing else we still have each other.

Speaking of having each other, we found another family in our city that has a girl with Rett's.  The odds of that are pretty slim but here we are.  They have been doing this whole deal alone for the last 2 or 3 years.  Now we can join them and support them and they can do the same for us.  They weren't able to make it to the strollathon but I found their name and location on a display.  A few clicks on facebook and voila! social networking takes steps to go live.  Gotta love modern technology.

The turnout for the event was pretty good.  There were girls with Rett's there whose ages ranged from just under 2 all the way up to 16 years old.  Chloe was the youngest as far as I know. It was a heavy dose of a hard reality seeing some of the girls in the later stages.  Each of the girls were having issues of their own, facing different procedures and surgeries, and starting school among other things.  Every girl and family was unique with one thing in common.  Even so, looking into the eyes of these girls you understand that they are just as normal as me and you in there, they just cannot express it.  There is something about the eyes.

So remember people, October is Rett Syndrome awareness month (along with a gauntlet of other things to be aware of, I know) and these girls have no voice of their own.  They need us to speak up for them and gather support.  These families need hope and help.  So do a little research for yourself and share what you find with your facebook friends, twitter timeline, Google+ stream, and your blog readers.  Dye your hair purple and tell everyone who asks you about it why you would do such a thing...or not...only crazy people dye their hair wacky colors...okay so we're a little crazy.  Be that, be crazy.  Take a few minutes out of your busy day or night or whatever and give it to these girls.  Spread the word, share a buck, say a prayer.  They may only be able to pay you back with a glare and a smile but those small gestures are priceless.

Saturday, October 1, 2011

Maybe its still my fault

I was digging around in my blog archives at DN and discovered this post.  It was published over six months ago, long before genetics tests were even on the radar screen.  I had forgotten all about this post.  It seems like ages ago when we received the news that has changed our lives.  Now that we have a name for Chloe's disorder and know more about what to expect, I don't know exactly what to think of the post.  It seems almost prophetic in a way.  After reading it again I decided to share it over here.  Many things have changed but one thing remains constant.  See for yourself.


It's all my fault

We are going through some very trying times in our lives right now. The story is this: we have a daughter that is nearly 16 months old. Most toddlers her age are walking, talking, feeding themselves and being chased around by their parents. Our daughter still has to be fed with a bottle to be well nourished. She cannot walk, she is not even able to crawl on her hands and knees. We haven't heard the joyful sound of her calling for mama or dada. She is like a newborn in a toddlers body and I think it is all my fault.

It's not because of some enormous sin that God is punishing me for. I know that my punishment for sin was bore on Christ's cross 2000 years ago. No, it's not God giving us what we deserve. Rather, I think it is something I asked for in prayer.

I know what you're thinking. Who would ask for a handicapped child? Well, I didn't. What I asked for is for God to give me his best. I asked that He would bless me in every way to make me and my wife more like Christ. So I am convinced that the difficulties we face concerning our beloved daughter are God's blessing in answer to prayer.

Hebrews 5:8 says Although he was a son, 
he learned obedience through what he suffered.

So we are suffering, it's all my fault and I thank God for it. Your prayers on our behalf are greatly appreciated. Not for our ability to cope or to understand but rather for us to trust and obey and to count it all joy.


Your prayers are still appreciated.  

We still don't understand.  

We're still hopeful but it is still tough.  

Now we know it is likely a completely random genetic mutation like the X-men but in a not so cool read your mind, control the elements or shape-shift sorta way.  

Even so, she IS still our special little girl and maybe it is still my fault.