Sunday, April 1, 2012

Not Just A Baby With Trisomy 13

We have officially hit the 2 month mark! Woohoo! I'm still sane too, for the most part. Watching Dalton grow and change over the past 2 months has been such a blessing, one I was not sure I was going to get to have. He is absolutely beautiful and he teaches me something new everyday.

I have been very busy though filling out a daunting application for financial assistance for special needs children. I had to write down all of Dalton's diagnosis'. It quickly ripped me back to reality reading over all of the different evaluations from doctors and therapists. When I compiled the list of 20+ different things that they have diagnosed my baby with I stopped to think, where does the list go of what he CAN do, not what he CANNOT?

Where do I put that every morning Dalton likes to start his day by laughing hysterically with Mommy and Daddy? Where do I put that he can play a mean tune with his feet on his piano mat? Where do I put that he can pout with the best of them? Where do I put that his "serious face" means it is going to start smelling within the next 30 seconds? Where do I put that he likes to stare with his beautiful blue eyes at any moving fan or light? Where do I put that music can soothe him into the calmest state I have ever seen?

Where do those important things go on this 200 page application?

They don't.

The people that will assist us in funding some of Dalton's therapies and surgeries don't look at him as Dalton Craig, firstborn miracle baby of Kara and Jonathan. They look at him as a baby with severe partial Trisomy 13. And that's it.

I refuse to allow my son's diagnosis to define who he is or limit him in what he is capable of doing.

When people comment to me "Oh he looks so normal", it doesn't help the situation (to be honest I hate it when people say it!). If you would like to comment on how he looks then the word I like to use is, extraordinary. Because that's what he is. He isn't normal, nor will he ever be, because God made him extra special.

God forbid if something should happen to Dalton and he goes to the Heavenly Father sooner than later I would never want Dalton to be remembered as "the baby who had a genetic disorder", but as "a gift from above sent here to teach others more about the Lord".

This past week, we attended baby Porter's memorial service. It was a beautiful celebration of life. Not one part was centered on the fact that Porter had a terrible diagnosis, but it was centered on the fact that his parents, Seth and Jeannie, treasured every single minute of the 38 that they had with their precious boy. He knew nothing but love and was delivered back into the arms of our Father. Porter was not defined by his Trisomy 13 diagnosis and nor will I let Dalton be.

Dalton is not doubt a miracle but I want nothing more than for him to live a life that is full and meaningful to him. His life may look different than those around him but we will teach him that his life is just as precious as others. I pray daily that Dalton becomes a man of God working to honor the Father.

Thank you for your continued prayers and support. We appreciate and feel each and every one of them.

We love you!

I am posting a video of Dalton jamming on his new piano. He loves it!

video

10 comments:

  1. Good for you! Never let any diagnosis define sweet Dalton. He is a precious miracle, which is way more important than anything else. Our son has mild CP and we get the same comments from people all the time, "You would never know there was anything wrong..." Well, thanks, we never thought there was anything wrong with him to begin with. Stay strong in filling out all that paper work and dealing with all kinds of people, it's exhausting! Dalton is beautiful, I found your blog through a friend on FB and am so happy when I see new posts. Much love and prayers!

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  2. Beautiful post from a beautiful mamma with a beautiful heart.

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  3. Put him on a pair of funky glasses and call him Elton John! He can really jam on that computer! :) I so understand what you mean by hating when people say "he looks so normal!" Yuck-o! I hate that! I usually just smile and nod, but what I want to say is that Cooper isn't normal. Normal is boring. He's way better than normal and he certainly isn't boring!

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  4. He's not "normal" - he's amazing! Extraordinary like you say! But he is just adorable. It was good to see yall Thursday... I'll be waiting on that invite to the beer buffet :)
    Love ya and that handsome Dalton.

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  5. He's beautiful! God bless your little family.

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  6. Dalton is so lucky to have a wonderful mom like you. My daughter Ashley passed away 4 years ago at 23 days old from Mosaic Trisomy 13, and I also made sure no one defined her by her Trisomy. I didnt know prenatally that she had T13, only about spina bifida, but I only told my family about it because I didnt want her to be treated any differently. I love reading about Dalton, he is a cutie. Thanks for sharing your beautiful baby boy with us. God Bless your family.

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  7. Praying for your extraordinary boy and for you every day.

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  8. Dalton is a miracle baby he is so cute we call him baby Dalton at work i ask your husband everyday how baby Dalton doing today and i can see his face lights up everytime i ask he not just a miracle he is the NUMBER 1 mircale baby in the world we love him and hope to see him one day u are doing a great job keep up the good work he is going to be just fine.

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  9. He is AMAZING! Thank you for the updates on him! Though I've never met you or him he is always on my mind. What a wonderful wonderful blessing he is to the world!

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  10. Extraordinary gifts only come to extraordinary people! What a blessing your family is!

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