Six months.
Six months ago today our lives were changed forever. Every dream we'd ever had for our son was changed. Every expectation we had for our lives was changed. Six months ago today our son was diagnosed. Six months ago today our lives began to revolve around SMA.
The last six months have been difficult. Navigating a rare disease diagnosis isn't really something people are prepared to do. There's no handbook or website you can read to teach you how to live with something like this.
Every single day there's something new to consider or worry about. And if you know me, you know I'm a worrier. I've spent the last six months living on eggshells. SMA is a tricky disease. It affects so much and can create some very serious complications. I worry every day about what new obstacle we might face. Medically, I'm constantly concerned about Cooper getting sick or needing more medical intervention than he already receives. I'm also concerned about what we might face when it comes to living our lives and going on "adventures" as we call them in the Walls house. Because I'm such a worrier, I typically have already thought about any and all things that could be different or more difficult for our family. I already know which events or activities we may not be able to participate in and I feel like I'm usually pretty prepared to handle these things.
But this weekend we went to Hocking Hills for our sister's wedding. And you can't go to Hocking Hills without going to the caves. So we went to the caves. Twice. And it was so much fun. We put Cooper in a baby carrier and besides running out of breath a little easier (because dude is finally gaining weight and getting heavy!), things went really smoothly. But what happens in a year or two when he no longer fits in a baby carrier? Something I haven't thought about yet. Most places we visit and adventures we go on allow us to have him in a stroller. But you can't go on a hike in a stroller. Obviously they make different child carriers and we'll be able to carry him in one of those for the next few years. But what if in 5, 6, 7, or 10 years he still isn't able to walk? What do we do then? We can't stop living our lives and we're not going to make him sit out when it becomes too difficult to include him. We'll have to find a way. And I'm sure we'll figure it out. We're pretty creative and have some amazing friends and family who will do whatever they can to help us navigate these kinds of challenges. But it hit me like a ton of bricks when I realized this scenario was one I hadn't considered yet.
We're only six months into this journey so I know things like that are going to happen more times than I can count. And I'm confident we're going to succeed at giving our son the most normal childhood possible. There will be things he won't be able to do but we're going to do our absolute best to give him the opportunity to participate in every single thing he wants to do. Even if it seems impossible at first.
Being a family affected by SMA has changed the way we look at life. We love a little harder. We hug a little tighter. We share our feelings a little more. We're a little more understanding and have a little more patience. We're grateful for every single day, even the tough ones. We know that had Cooper been born just a year earlier, our lives would be completely different.
I wish our family had never heard of Spinal Muscular Atrophy. I wish no family had heard of Spinal Muscular Atrophy because I wish it didn't exist. But we have and it does. And although I hate this disease with every fiber of my being, I'm thankful for the lessons it has taught us and will continue to teach us for the rest of our lives.
Six months down, forever to go.
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