October 10, 2018

This morning, I was sitting with Killian, giving him his morning medications, and messaging with another mom on this floor. I came to a very strange realization. Absolutely no one can plan for something like this. No one deserves it. No one prepares for it. That being said, all the things that I’m doing and learning, our new normal, is no different from all the countless other parents that are in this same position. Having a critically ill child isn’t for the faint of heart.

I’ve heard, and had some people directly ask, why didn’t we choose to terminate. Why put yourself and your child through this.
That just wasn’t something we ever wanted to do. In a million years, I would never ever judge a parent that did make that choice. This is a life altering thing, this will fundamentally change me and Dean, and our family, forever. I will never be the same person I was 6 weeks ago. But I know that I was meant to be this little boys mom.

I think that no matter how this plays out, and there’s no way to know how it will, Killian was meant to be here. He has and will continue to change people’s lives, make them appreciate life a little differently.

It’s sad and scary and very hard to think about the reality of this situation. We’re in for a battle to get Killian to his heart, one no one can guarantee that we will win. And if we do win, we don’t have a clue how long we will be able to keep him with us. But we know, and the Drs here have told us, it’s not going to be about the amount of time that we get. It’s all going to be about the quality of the time. And realistically, no one is guaranteed a specific amount of time here. So let’s all keep the focus on making the time we do have, the best time we can.

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