WALKING WITH COOPY

My child asked to go to heaven last night. He said he didn't want to be alive anymore. He's three so he doesn't fully understand the...

Cooper turns 4 in less than a month. Like any normal toddler, he's beyond excited for his birthday and party. He can't wait to go to...

As I was watching his little arms and legs move, his hands twitch and fingers wiggle, I wondered if maybe he was dreaming.

I don't want to waste anymore time thinking about things that might happen. I need to enjoy my family and my life as it is right now.

Finally, don’t spend the next few years being angry. Don’t waste your days thinking about what could of or should of been.

I’ve thought about him growing up and getting married and becoming a dad. But I’d never thought of this.

I had to tell my two year old that I can't teach him how to walk. That I can't fix his legs.

You see, we're lifers. This boy and I. Once a week. Every week. Forever.

Cooper is starting to become very aware of his differences and it's heartbreaking.

I feel like our world is just standing still. And I’m just going through the motions of life right now.

He yelled "Look Mommy! A wheelchair! Just like me and my big wheelchair!"

But every now and then, something happens or a thought crosses my mind that hits me like a wave.

For the rest of the month we are going to be selling these shirts as a preorder and donating the money to two different organizations.

Six months ago today our lives began to revolve around SMA... And although I hate this disease with every fiber of my being, I'm thankful...

Because if I'm being honest, I could be sad all the time. I could spend the rest of my life being sad. Being mad. Being bitter.

It has been incredible to watch him gain some sort of independence over the last couple weeks.

My sweet Maisey girl. There's not a single person in the world like my girl. She's brilliant, hilarious, sassy, loving, gentle,...

But I also can't help but grieve the childhood I thought he'd have. The childhood I thought I'd get to experience with him.

Life is crazy right now. But it's also simple and weirdly calm. Cooper received his life saving, miraculous treatment on Wednesday, April 8.

Spinal Muscular Atrophy is the number one genetic cause of death for infants. Children can only get SMA if both parents are carriers.

I couldn't help but worry about having to watch him become weaker and weaker until he died.

All it took was a doctor who cared enough to listen

We didn't have that test done yet. That wasn't part of our last blood draw. How would they know? They can't know that, right?

It was quite the wild week. But it was nothing compared to what was in store for us.

I got a call from Nationwide today!

I'm aware that we may never be able to fix his issues. But the neurologist said something on Wednesday that I just can't stop thinking about

We go to the neurologist tomorrow. I had planned on canceling this appointment because I don't really have a lot of faith in this doctor....

Sometimes I feel like I'm living a double life.

It's like his little body is frozen in time. Stuck at 8 months old

Some days I'm hopeful, others I'm terrified.

An arachnoid cyst. A cyst that he said he believes very well could be causing all of our issues!

Suddenly I was giving his medical history and setting up an appointment for a second opinion. It was a huge weight off my shoulders.

"The brain scan looks normal. The spine. Yeah, that looks normal too. Except they did find a cyst..."

He said the absence of those reflexes told him there was possibly something going on in his spine.

Whew. Nothing serious. He just needs a little extra help. Hopefully.