March 23, 2020.
Exactly two years ago.
The worst day of my life.
The day we were told our baby had SMA.
It’s crazy to me that it’s been two years. It seems like it was yesterday when I got the unexpected sequence of calls at work. When I stood in the break room sobbing and telling my co-worker “I just don’t want my baby to die.” But at the same time, it seems like a lifetime ago. I can barely remember what our life was like before SMA. Before all the therapies and appointments and worries. Part of me is thankful for that. I think if I could constantly recall what our lives were like before SMA, I would be stuck longing for the past instead of hopeful for our future.
I haven’t thought much about today‘s anniversary. Last year I dreaded seeing March 23rd. This year it’s been just another day on the calendar. But as I was driving to work this morning I started thinking about what my day was like 2 years ago. All of the thoughts and emotions I had. And I started thinking about what I’d say to myself on that day, knowing what I know now.
So here is a letter to myself, on diagnosis day:
Hey Mama,
I know the last few hours have been the scariest of your life. And I know you’re still reeling from those phone calls. You’re worried your little boy is going to die. You think this disease will take him from you. The entire world seems like it’s crashing down around you right now. Nothing makes sense and you don’t know where to go from here. Do me a favor and just take a breath. Close yours eyes and take a deep breath. It might not seem like it today but things are going to be okay. Your baby is going to be okay. You aren’t going to lose him.
This journey is going to be scary. And at times you’ll wonder how in the world you’re going to survive it. But you will. Finding out over the phone and in the way you did was bad. Traumatic, even. But deep down, you knew this is what it was. This wasn’t a huge shock. Now that you know what the problem is, you can start working on a solution.
In a couple days you’re going to go to Nationwide and they’re going to give you so much information. Write it down. Take it in. But don’t beat yourself up if you don’t remember it all. You don’t have to become an SMA expert overnight.
Nobody knows it yet but the whole world is about to shut down. Everyone is about to be sent into a panic. This will be weirdly comforting to you. Not the global pandemic part. That part is scary as shit. But the quarantine part, that part is kind of nice. Your family won’t be the only family quarantining. The whole world will be too. It will be comforting to know others are going through something sort of similar to what your family is.
After Coopy boy receives his treatment, you’re going to watch him thrive. He’s going to have the best personality. And even though he won’t move around like a typical child, he’s still going to get around. And he’s still going to push every button you have. And he’s going to give you a run for your money, trust me. You’re going to be amazed by him every single day. And that little boy is going to steal your heart. More than you ever thought possible. But do me a favor and don’t forget about your girl. She still needs you. More so now than ever before. Because now she’s no longer just a big sister. She’s a sister of a boy with extra needs. There will be days where she really struggles and needs a little extra love. Make sure you give it to her.
Finally, don’t spend the next few years being angry. Don’t waste your days thinking about what could of or should of been. It’s not productive and won’t change anything. Love the life you have. No matter how hard and unfair it may seem right now. It won’t be the life you pictured, but it will still be pretty incredible. I promise.
Love,
Your stronger, braver, less scared, more determined, 2 years older self
P.S. We’re at therapy today and just watched our super strong dude stand up in the water with the least amount of help he’s ever needed. He’s getting stronger mama. Every single day. ❤️
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