Everything. Absolutely everything.
A common bond.
We officially got the 100% diagnosis of Noah yesterday. No more clinical diagnosis. There is no refuting it by anyone.
I knew it was going to be an almost bittersweet phone call and I expected to have mixed emotions. But I had very intense emotions that I wasn’t counting on. It was like the rug was pulled out from under me once again. I was hysterical for a brief moment. But, I knew this was what he had before even leaving the hospital. I was prepared to fight for the same diagnosis if the genetic testing came back normal, which it does 1/3 of the time. I was ready for a battle to keep the diagnosis. But I got it and for once it was something I was expecting, but it still affected me greater than I counted on. I cried and held on to my sweet little guy and smothered him in kisses and cried some more. I reached out to those who have been down the same, or very similar, road. I learned this is something we all go through. It’s a sort of right of passage I guess.
But I quickly remembered he was the same boy today, yesterday, and the day he was created. He just has an official diagnosis and that doesn’t change one thing in his world.
As anyone in the world of syndromes, disorders, disabilities knows a diagnosis is key. Without it, it is very hard to find help and funding and many people are unwilling to help you. That is the most frustrating part. There are many children and adults who don’t have a diagnosis but have global delays and/or need help but people are hesitant to give funding or help. Why? It’s rather infuriating. You would think, help whoever needs help the best you can and worry about the “label” later. The diagnosis doesn’t change things. All it does is maybe help you know what track the future *might* take but getting through the now is all you can focus on. You need to get through “now” to move on and improve.
I woke up this morning back to normal. Well, if you can consider this normal. Let’s say my new normal. I feel what many others echoed, that it becomes all so final and almost feels like a huge relief. It was like a big weight was lifted off of my shoulders. I no longer have to wait and wonder. I can breathe a huge sigh of relief and keep celebrating the littlest and biggest milestones Noah reaches.
If this journey teaches me and anyone else is that you really, really do take so much for granted and how easy it is to become one of “them”. “Them” being those people who have a medically fragile baby because the common thought during pregnancy and life in general is that “those things” don’t happen to you. They happen to other people. You somehow feel immune and safe even though you’re not and never can be. Sure it’s unlikely but it can (& does) happen. Case and point my beautiful son and his CHARGEr friends all over the world. But just know, even though it feels like the end of the world for you, your family, and your newest child it’s not. Far from it. Your eyes get opened to a more beautiful place that you didn’t know existed. Everything, absolutely everything is new again.
But please don’t feel sorry for me, my family, or my son in receiving this diagnosis. Sure if I could take this away from him I would but I can’t and there is nothing to be sorry for. No parent likes to be offered condolences on their living, laughing, breathing child who is very much alive. I love my son and he is beautiful. He’s a gift to us and the world and if people can’t see that, that is their problem. Not ours.
But honestly, the best thing this did was open me to a world filled with supportive, understanding, and amazing Moms, Dads, siblings, CHARGErs, and friends. Even though I haven’t met any of those people in person, it feels like I have. It feels like they know me better than I know myself some days. They know exactly what I’m feeling and what needs to be said in situations. You don’t have to worry about someone saying the “wrong thing” even when trying to be helpful. Just knowing there are many other people out there who “get it” and what “it” means takes away that feeling of isolation. You honestly feel alone in a world surrounded by people until you realize there are many others right there along side with you. C.S. Lewis said it best:
“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”
And that can help make everything ok. You can keep on keepin’ on.
This may not be the path I wanted to take but it is the path I was meant to take.