Sunday, April 8, 2012

Easter Celebration

I wanted to share some pictures from Dalton's first Easter. We took him to an Easter egg hunt on Saturday to meet the bunny. Obviously no hunting happened, but a cute outfit and some great pictures did. We are enjoying our Sunday with just our little family. For some reason this Easter feels particularly blessed. We are so thankful everyday to have the time we do with our little miracle man. Jonathan and I have made sure to share with Dalton the true meaning of Easter through prayer and scripture. We pray that he will come to know the truth that Christ has died, Christ has risen and he shall come again. Enjoy the pictures. Happy Easter!
Loving being outside with his cutie outfit.

Trying to hold his Easter basket.

Little man

Basking in the glory of God.

Floating baby picture.

Aunt MR loves her baby.

Family photo op.

So we tried to stick him in his basket.

Then he got stuck.

We found it hilarious.

Love this sweet face.

The Bunny and the awkwardly holding fairy princess.

Coming downstairs to see if the bunny came.

He did!

Daddy showing Dalton his basket.

Handsome little Easter bunny.

And we are over the bonnet.

Ahh! Relaxing on Easter Sunday.

Love these toesies.

His infamous pout.

And photo shoot is....done.

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!