These past few weeks have been a roller coaster of emotions for our little family. Cade has always had an extra large soft spot. So much so that when he was 5 days old we were sent to T.C. Thompson for an ultrasound. We were sent on our way with a healthy baby boy that we were just going to "watch". Well... we continued watching it and nothing happened. At his 9 month well baby visit I asked the doc if super paranoid momma (that's me) should put a helmet on baby boy?? "We'll continue to keep an eye on it but he really is fine." Momma just wasn't feeling that answer so we went for a second opinion which led to another ultrasound (which was fine) and a full body x-ray. Which Cade loved having each individual bone held down by two strangers that smelled like McDonalds for an hour while mom was in the corner with the swine flu and dad was pacing the room like a prowling lion. Lovely visual I know. After two days of waiting we were told that he MIGHT have a genetic disorder so off we went to Vanderbilt on Friday. With all that being said...
Friday we saw the genetic specialist who confirmed that Cade has Cleidocranial Dysplasia (CCD as we will lovingly refer to it) Basically he was born with a permanent soft spot, no collar bone (yes, you read that correctly) and a scared momma. There are a couple other little things that go along with it and luckily he doesn't have quite a few of those. It's a scary thing when someone you don't know but somehow unwaveringly trust looks you in the eye and tells you your precious and perfect baby boy is not normal. What does that mean?? I'm told it won't get any better or any worse, there's no surgery out there to fix it and to not change any dreams or expectations I had for him... just be extra careful, no football or gymnastics and he may not be the strongest of the tallest kid in the group. I can handle those stipulations. For those of you who were aware of our possible issue, thank you for your concerns and prayers... keep them coming! This momma has a lot of questions and worries and concerns (I could go on and on) in her head.
I thought I would leave you with a little attitude and a little sweetness... and yes you can have both all wrapped up in a cute "abnormal" baby boy:)
Monday, September 14, 2009
Define normal...
Posted by Alison at 5:47 PM
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6 comments:
Alison,
I am having a hard time putting into words what I am feeling for your little family. I'll try my best to convey it...
I can't even begin to imagine what you all have been through. I think it's a mommy's nightmare to imagine her child not being perfect, but here is the true reality... NONE of us are normal:) and VERY far from perfect! If you ask me, God just spent a little extra time on BEAUTIFUL baby boy Cade.
"He may not be the tallest or strongest kid in the group..." but there is no doubt in my mind that the Lord has His mighty hand all over your sweet little son's life. Just look at that handsome and happy face! He is such a blessing! I really believe that Mr. Personality will blow us away with the great things he CAN do and the even greater things the Lord will do through him.
Praying for you as you work through all the questions and concerns. Just remember who's got in all in His hands...
Wow. I'll be praying for you all as you hopefully find answers for your questions. He really is a wonderful boy, and I'm excited to see what awesome things God has in store for his life & yours.
Alison,
I had no idea! I think Cade is beautiful and he has such a personality. I mean, I haven't even met the kid and his joy for life just flows from every picture.
We will keep you guys in our prayers!
A mom's intuition knows when to keep pursuing. Praise God you did this and found out early what to expect. However, my heart is hurting for you all. No one ever plans to take these kinds of journeys in life. God WILL give you strength for this. You have a great family full of love for each other. It is a joy to see the three of you together. Extra prayers will be lifted up for your family.
Alison, I agree with everything everyone said above! It's so obvious how perfect your little man really is! We'll be praying for this next chapter in your life. I'm proud of you for putting it all into perspective and being so stong.
Won't it be great when he's walking across the graduation stage to think back on these last few weeks? There's nothing of importance that boy can't do, and he's going to fall just perfectly into everything he was perfectly created to do. You are super strong, Miss AlEEson.
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