I know it's been a while since I have written. I'm really sorry about that. I will log on and update you on our lives later but right now I want to take a moment and tell you about a really cool website. There are not a lot of things Chloe can do. She doesn't play with toys like other little girls her age. Little Tikes, Playskool, Fisher Price are all present in our home, but are used about as much as the Total Gym is used in yours. Plush baby dolls, and plush animals are about the only thing I have seen her get excited over. She has her famous Duckie of course. But she loves to give them kisses. It makes my heart smile and as you know since our diagnosis, heart smiles are few and far between. One day I was looking for a plush baby doll that she could play with that would be unique like her. Then I found it, Baby Be Blessed.
Its a website made by stay at home Christian moms who make dolls with a Bible verse patch sewn on the dolls tummy. You pick the doll, the hair color, the skin color, the dress and the Bible verse. They sew the doll and Viola! You can even add freckles, glasses and even a flower. We ordered one for Chloe, I'll let you know how it looks when we get her. I've dropped some not so subtle hints I want the Valentines Day one. I love the idea of Bobby picking out the details of this sweet doll, and then deciding on a Bible verse with me, his beloved, to put on her. I love the idea of him lovingly picking out her little outfit just for me. I know I'm a dork. But to me that doll, paired with dinner and a movie, throw in a red rose and you have the perfect Valentines Day. It's romantic, thoughtful, timeless and sweet. Ok I digress. Please please please at least check out this site. At the very least I might win a precious little pink lamb.
Friday, January 13, 2012
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.
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
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.
_______________________________________________________________
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.
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.
_______________________________________________________________
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.
Friday, September 30, 2011
My new role model
So I've been thinking that I'm going to make an effort to post more positive things on here and not just my current mood. I'm going to try. So here goes.
I have a new role model to look up to. I seriously didn't think that adults had role models but I do so just go with it. My new role model is this lady who I read about who I can't even remember her name. Some role model she is, you may be thinking but just wait and you'll find out why. Ok so here is her official story and blog http://addiandcassi.com/ but here's my totally unofficial quickie version. Addie and Cassi are twins born with this rare disorder that is called the Childhood Alzheimer's and its got a 100% fatality rate. Sucks huh? But wait. So this mom goes into SuperMom mode and starts her own research and finds out that the active ingredient in Frebreeze is a chemical that is given to her daughters in the right dose will keep them alive. Sounds crazy huh? So she goes to all these doctors trying to get a doc to inject her kids with Frebreeze. Finially she gets a doc to take her seriously and he tells her if she can get the FDA to approve of a case specific clinical trial he'll do it. So she learns how to submit the right papers and she files. They agree and poof! before you can say "so fresh and so clean" her girls are doing better! Now the problem is that these girls are getting injections multiple times a day and they can't keep this up because the Frebreeze needs to really be injected in their brains, so once again Mom gets these medicine injector pumps and is reconfiguring it to fit her kids' brains. She's a MOM, not like she used to be a genetic doctor and now she's a mom but a mom who loves her girls more than anything and had refused to just take the diagnosis and say ok. She is pouring herself into this, and this will not only help her kids but others, the rare kids who's lot in life is to have this death sentence placed upon them. No she is turning the medical world upside down because she isn't some fancy shamachy doctor or professor. She's a mom. A mom with stones. She made the gut wrenchingly tough decision to say well they are going to die if I don't try and if I do try they could die. I- I will try. Then she wouldn't take no for an answer. And that is who I want to be. I do not want to go gently into that good night. People say " well God gave Chloe to very special parents" and you know maybe they're right, maybe God gave us Chloe because He in His infinite wisdom knew that I would rage, rage against the dying of the light.
I have a new role model to look up to. I seriously didn't think that adults had role models but I do so just go with it. My new role model is this lady who I read about who I can't even remember her name. Some role model she is, you may be thinking but just wait and you'll find out why. Ok so here is her official story and blog http://addiandcassi.com/ but here's my totally unofficial quickie version. Addie and Cassi are twins born with this rare disorder that is called the Childhood Alzheimer's and its got a 100% fatality rate. Sucks huh? But wait. So this mom goes into SuperMom mode and starts her own research and finds out that the active ingredient in Frebreeze is a chemical that is given to her daughters in the right dose will keep them alive. Sounds crazy huh? So she goes to all these doctors trying to get a doc to inject her kids with Frebreeze. Finially she gets a doc to take her seriously and he tells her if she can get the FDA to approve of a case specific clinical trial he'll do it. So she learns how to submit the right papers and she files. They agree and poof! before you can say "so fresh and so clean" her girls are doing better! Now the problem is that these girls are getting injections multiple times a day and they can't keep this up because the Frebreeze needs to really be injected in their brains, so once again Mom gets these medicine injector pumps and is reconfiguring it to fit her kids' brains. She's a MOM, not like she used to be a genetic doctor and now she's a mom but a mom who loves her girls more than anything and had refused to just take the diagnosis and say ok. She is pouring herself into this, and this will not only help her kids but others, the rare kids who's lot in life is to have this death sentence placed upon them. No she is turning the medical world upside down because she isn't some fancy shamachy doctor or professor. She's a mom. A mom with stones. She made the gut wrenchingly tough decision to say well they are going to die if I don't try and if I do try they could die. I- I will try. Then she wouldn't take no for an answer. And that is who I want to be. I do not want to go gently into that good night. People say " well God gave Chloe to very special parents" and you know maybe they're right, maybe God gave us Chloe because He in His infinite wisdom knew that I would rage, rage against the dying of the light.
Thursday, September 29, 2011
Sticky Notes from Heaven
Ok so lately I've been talking to God ALOT. Not in the ohhhh she prays twenty times a day and reads her Bible every hour kinda way. No lately it's been yelling at Him. Not the why me??? Yelling but the "God, I know You can heal her JUST DO IT!!!" yeah yeah I know yelling at God not a great idea but seriously I think it would be easier sometimes to deal with Rett Syndrome if I didn't wholehearted believe in a God that spoke the universe into existence. Because then I wouldnt have the knowledge that it's totally simple for Him to heal her. And please don't even try to tell me that crap about it is all for His glory, or but it will all work out for the best or anything like that because quite frankly my dear I don't give a damn. Anyways.... So I yell at God and I ask Him for stuff (conflicting I know but I figure what the hey) like a house my daughter can move around in that isn't making her sicker. Then I wait. Not like wait and do nothing but wait like ok God is this your answer or is this your answer? I need a sticky note from heaven.
Seriously. I just need one. I don't think it's to much to ask, I mean He wrote the 10 Commandments out for Moses and what did Moses do? He smashed them! Not me! God gives me a sticky note and that bad boy is going in my memory box FOREVER! But think about it. There is a house that is sooo perfect for us, just not on the market yet. There is another house that someone might be willing to GIVE us, only we have to have the house moved and it ain't a trailer. Is that what God wants? When I prayed about it before all I got from Him was Wait. Then this free house comes up. Is the wait for the free house? Or is it for the Extreme Makeover that a million people have said we should apply for? Is the wait just wait and He'll heal Chloe and we won't be so rushed to get into a house? See the need for a sticky note? I'm looking at everything and everyone thinking is this it, God? Maybe He had my sticky note all ready and then I yelled at Him and He smited the sticky note. Poor sticky. Grrrrr. Am I the only one to ever wish for a sticky note?
Seriously. I just need one. I don't think it's to much to ask, I mean He wrote the 10 Commandments out for Moses and what did Moses do? He smashed them! Not me! God gives me a sticky note and that bad boy is going in my memory box FOREVER! But think about it. There is a house that is sooo perfect for us, just not on the market yet. There is another house that someone might be willing to GIVE us, only we have to have the house moved and it ain't a trailer. Is that what God wants? When I prayed about it before all I got from Him was Wait. Then this free house comes up. Is the wait for the free house? Or is it for the Extreme Makeover that a million people have said we should apply for? Is the wait just wait and He'll heal Chloe and we won't be so rushed to get into a house? See the need for a sticky note? I'm looking at everything and everyone thinking is this it, God? Maybe He had my sticky note all ready and then I yelled at Him and He smited the sticky note. Poor sticky. Grrrrr. Am I the only one to ever wish for a sticky note?
Wednesday, September 28, 2011
Yesterday was a good day
So Bobby wanted me to write this because apparently I've been all gloom and doomy. So....
Yesterday was GREAT!!! No sarcasm or anything. Chloe was more alert and more vocal than has been in a long time. She was so happy and content. She took a nap and afterwards she was a little groggy but she bounced back and pretty soon she was playing and laughing. I was tiding up and I heard this noise of the fluttering paper, and then a thump. I came into the living room and I see this little girl surrounded by all this mess. For a few milliseconds I was upset at the mess in the newly cleaned room,then I was taken back by the thought that one day, perhaps one day soon, she won't be able to make a mess. My heart was heavy but I tried to smile and really enjoy the moment. I waited till she moved on to make a mess with the socks before I cleaned it up and when I did it wasn't with the expelled air of maryterdoom that I usually have. I cleaned it up with a lightness of heart I hadn't felt in a long long time.
But the good times didn't stop there. Bobby got home and we got out the door in one not so fluid motion. She didn't sleep in the van on the way to therapy like she normally does, instead she laughed and clapped all the way there. Then in speech she was engaged, she was alert, she was making sounds that I had never heard before, she was imitating her therapist, I couldn't even taken it in, I was so enthralled. Our wonderful speech therapist wanted to try something new so she had me get the iPad and we used a customizable app and had Chloe touch a button with a picture of her cheerios on it. She would touch the picture and would give her a cheerio. It was great! To think that she was understanding it, and doing what we asked her... It was so exciting. Her therapy session is supposed to be only 30 mins long but because we're the last clients of the day she went over and it was almost an hour of wonderfulness! That night I didn't want her to go to sleep. I was scared that like Cinderella my ball and dress and coach would dissolve and I would go back to the reality I had before. I scoured my brain to see what I had done differently the night or something. I came up empty but this morning she was great! So yesterday was a great day! I want so badly to believe that she will only get better from her. I know it's not realistic but a girl can dream right??
Yesterday was GREAT!!! No sarcasm or anything. Chloe was more alert and more vocal than has been in a long time. She was so happy and content. She took a nap and afterwards she was a little groggy but she bounced back and pretty soon she was playing and laughing. I was tiding up and I heard this noise of the fluttering paper, and then a thump. I came into the living room and I see this little girl surrounded by all this mess. For a few milliseconds I was upset at the mess in the newly cleaned room,then I was taken back by the thought that one day, perhaps one day soon, she won't be able to make a mess. My heart was heavy but I tried to smile and really enjoy the moment. I waited till she moved on to make a mess with the socks before I cleaned it up and when I did it wasn't with the expelled air of maryterdoom that I usually have. I cleaned it up with a lightness of heart I hadn't felt in a long long time.
But the good times didn't stop there. Bobby got home and we got out the door in one not so fluid motion. She didn't sleep in the van on the way to therapy like she normally does, instead she laughed and clapped all the way there. Then in speech she was engaged, she was alert, she was making sounds that I had never heard before, she was imitating her therapist, I couldn't even taken it in, I was so enthralled. Our wonderful speech therapist wanted to try something new so she had me get the iPad and we used a customizable app and had Chloe touch a button with a picture of her cheerios on it. She would touch the picture and would give her a cheerio. It was great! To think that she was understanding it, and doing what we asked her... It was so exciting. Her therapy session is supposed to be only 30 mins long but because we're the last clients of the day she went over and it was almost an hour of wonderfulness! That night I didn't want her to go to sleep. I was scared that like Cinderella my ball and dress and coach would dissolve and I would go back to the reality I had before. I scoured my brain to see what I had done differently the night or something. I came up empty but this morning she was great! So yesterday was a great day! I want so badly to believe that she will only get better from her. I know it's not realistic but a girl can dream right??
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