Monday, September 8, 2008

Two Words That Forever Changed Our Lives

This is a very difficult post for me to write today. Partially because I thought I had about 6 more weeks to work on it. God had different plans for me.

Most of you know Amelia was born with a condition called Radial Dysplasia. Basically her radius bone did not grow properly in her left arm and that caused her left thumb to be abnormally formed. She is missing several bones, tendons, and muscles which causes her thumb to be non-functional. Associated with this condition comes heart defects, kidney problems, and blood concerns. She has 3 heart deformities--a hole, mitral valve prolapse, and a bicuspid valve. I won't go into all of the details here but just know her heart is healing and she should not ever need surgery. She has outgrown her kidney issues, and we are trusting God that she does not have any blood issues.

We had our first appointment when she was 8 days old at Texas Scottish Rite Hospital when we learned about her Radial Dysplasia. That day forever changed our lives. Since then we have seen numerous doctors, had a variety of different procedures, and watched our baby daughter go through things a parent would never wish they had to encounter. I think every parent would agree that they would do anything to be put in that child's place during those situations. This week will be no different.

On Wednesday (instead of October 17) Amelia will be having surgery on her hand to remove her thumb. Her index finger will be moved to its place. This procedure is called pollicization, and it is the most common surgery for her condition. The specialists at Scottish Rite have assured us that they want Amelia to have a hand that is as functional as possible. We agree this is what she needs, but it has been difficult for us to accept. She will be in a cast past her elbow for 6 weeks and then a splint.

Although I know she will adapt in her own way I feel the burden of all of her problems. I worry about the future because the world can be cruel to those that are different. All we can do as her parents are to remind her that she is created in the image of God and He has awesome things in store for her.

So instead of doing something totally superficial Wednesday when my daughter normally goes to mother's day out I will be in constant prayer for Amelia thanking God for the perfect child I have and for the surgeons who are making her life better.

8 Talk to Me:

meredith

thx for sharing about amelia's upcoming surgery wed--i'll be thinking about you guys and praying for you. it's so hard when little ones have to go through all this stuff--it's probably harder on us parents, especially b/c we wish we could do it for them:)

good for you for reinforcing in amelia that she is and always will be a beautiful creation of God. at our house we're big believers that different is good--you've seen our family portrait! let us know how things go wednesday.

minus five

dude. i'll be thinking about you guys. curt's little girl, teegin, who also happens to be my niece was born with a lot of health problems. it was hard on me even though i'm not her mom and i live in ny--and it was extremely hard on curt and jennifer. she's had more surgeries than me and she's not even 2!

you're in good hands at the scottish rite. my cousin spent quite a bit of time there. she was born with her insides on the outside, which means she never had a belly button, among other things. one of her feet didn't develop properly--it's missing some parts, so she only has a big toe and a little toe on that foot that make kind of a claw shape. it's pretty cool. she's 20 now and smarter than any of us.

kids can be cruel and if it weren't her thumb/finger, they'd probably find something else. my best haircutter only had 3 fingers on one of her hands and i didn't even know until i had been going there for a year. one of my friends who i referred her way pointed it out--saying how awesome it was that she could cut so well with less fingers.

a guy i worked with up here got into a bad car accident that resulted in his thumb and three of his fingers on his right hand being severed. they put his big toe from one of his feet onto his hand to replace his thumb, so it's kind of like a claw. i hadn't noticed that either until somebody else pointed it out. he's one of the fastest typers and designers i've ever been around.

my point is that there are missing digits all over the place in my life and every single one of them do the same things as everyone else--only in most cases, they seem to do it better.

she's lucky kid to have parents who love her and think she's awesome no matter what. i think the best things you can ever give a kid are love and confidence.

worst-case scenario is that some kid makes fun of her one day at school--if that happens, give me the kid's name and i'll take care of it.

profmommy4

Wow...I'm a peon!!! I'm so excited to be part of Amelia's blog. She is such a sweet, tender hearted little girl, and I am very much looking forward to being a part of her life for the next 8 months. Please know that my thoughts and prayers will be with you guys, and we will pray for Amelia during staff meetings and during the days she would normally be there, but can't.

I had no idea about her heart problems. My brother was born with a congenital heart defect, so I am very familiar with CHD's and what goes along with them. He had open heart surgery when he was 6 months, 2 years, 4 years and 8 years of age. His is 43 years old now and married with a son. I have all the confidence in the world that God will be with you and your family during these trying times.

Keep me posted, by phone and email on her progress, she has already stolen my heart.

Love and hugs,
"Ms. Maria" Peterson

Newberry

Cat, you all will continue to be in our prayers. We love Amelia so much and are so thankful that God blessed our family with such an amazing little girl!

Shanda

I had no idea Amelia had heart issues. Thank you for sharing. My heart goes out to you and Brad today, Amelia is in my prayers. Amelia and Ashlyn being so close in age, definitely puts your situation in perspective! I found your words encouraging and love the fact that you are giving thanks at a time like this. God is good. I will check up on your blog to find out how Amelia is doing!

Stacy

Praying for Amelia today

Emily

I have been on my knees praying all day for sweet Amelia. Keep us posted on how she is doing.

Scanlans

Catherine and Brad,
I have been thinking about and praying for you guys all day. You two are such wonderful parents that she will have all the confidence and love she needs through you and God.
I'm sure when she wakes up, she will have an earful to tell her doctors about her cast! Don't they know she is the princess??
Keep us posted please!
Lindsay

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