Mark, Jennifer, Ethan, Emily

This blog is about our family, who have dealt with the loss of two sons with Muscular Dystrophy, the adoption of a son diagnosed with Agenesis of Corpus Callosum and the birth our a healthy little girl. It's a crazy life, but we are loving it.

Wednesday, August 3, 2011

Smile & Say MRI!

Stinkbug waiting to do the MRI

                                                           *Warning. This post may be a little long.*

My heart is full. I love this boy very much.

Ethan went for his MRI last Friday. I have to say, the people at Dell Children's Hospital know what they're doing. We were there twice in one week for two tests & both times the staff was wonderful with Ethan.

Ethan did great with the MRI & they didn't have to sedate him. He was able to watch a movie  through goggles & earphones while they did the test.

When Ethan came to us, he was only 3 months old. We were handed a little chubby bald headed baby and told, here, he has ACC.  He'll probably have learning disabilities, possibly seizures. They were really vague and didn't have a lot of answers. We didn't care. To us, Ethan was perfect. He hit all his baby milestones on time, some early. Fast forward 8 years. We now have questions. What kind of ACC does Ethan have? Full ACC, partial ACC, thinned CC? None of the paperwork we had on him could confirm this.

While standing in the room with him while he was having the MRI, I was just in awe. All I could do is stand there and thank God for giving man the smarts & ability to run tests like this so we can see into Ethan's brain.

Even as I was standing there watching all of this, I knew. I knew the results already. I knew the MRI would confirm Ethan's ACC. I was at peace with that. I felt God's peace. I was just hoping that the test wouldn't add any other complications. I know children with ACC often have additional medical issues. I recently read the following:

"In nearly half of all cases, agenesis of the callosum is associated with different congenital abnormalities, including Dandy-Walker syndrome, septo-optic dysplasia, Chiari one and two malformations, Aicardi's syndrome and holoprosencephaly. Arachnoid cysts and hydrocephalus may also develop in conjunction with these abnormalities."

Again, I felt God giving me peace, and saying "Ethan may have ACC, but ACC doesn't have him." That's true. Ethan is amazing. Ethan may have ACC, but whatever the future holds, he will be awesome.

We got the call today. Ethan has complete ACC.

I'll admit it. I cried. I allowed myself to shed a few tears. Just a few, because I already knew and this doesn't change Ethan. It was the missing piece of the puzzle I knew would come.

Don't get me wrong. I didn't stay sad very long. The only thing wrong with his brain is ACC. Nothing else. He doesn't have seizures, hydrocephalus or other medical abnormalities. Ethan can walk & talk & run and ride a bike & do just about anything else he wants to. Other children with ACC are not so lucky.

I've come full circle. I'm amazed with Ethan. I look at him in awe. I always felt that Ethan was meant to be my son. That's really cool to know that the son I was meant to keep wasn't one of my own, but a little boy whose parents couldn't take care of him, a little boy who needed me as much as I needed him.

Now we know. So what? It doesn't change anything. We don't know what Ethan's future will hold, but I do know that it's gonna be alright. Whatever happens, Ethan will always be my boy, and I'm o.k. with that.

Me & Ethan on his 4th birthday.


  1. Nicely written. You're correct in saying that he may have ACC, but ACC doesn't have him. So happy for you and for Ethan that the MRI looked great other than the ACC. He's a very lucky little boy to have chosen you to be his parents :)

  2. Yes, I love how you saw that Ethan has ACC but ACC doesn't have him. I'm very happy to learn that he only has ACC and that the rest of his brain looks great!

  3. Thank you both so much for your support.