Last week my friend Stephanie’s youngest daughter, Blake, passed away.
She’s 5 weeks older than Charlotte.
They’ve known for a while now that her life would be cut short, because in March they found out she had SMA Type 1. I don’t know that I’ll ever forget her message to me about it. All I could think of was what was going to happen and until it did, they’d spend every day wondering if today was the day.
Here’s the thing, as I tell this I hesitate to write because it’s going to sound like it’s all about me, my feelings – and it’s not. My grief over their grief and Blake and her sister isn’t a billionth of how they feel. Yet I have to tell this from my side because it allows you to know them a little more like I do. To become emotionally invested in a way that only a story allows you to. And I truly want you all to know about Jeff and Stephanie, their girls, and SMA.
I watched SMA take the life of Florence, and rob Nella of her sweet smile. I don’t completely know the toll it takes long-term because Kaden suffered as we watched helplessly for three weeks – the parents of children with SMA shoulder this for months and years. Not that they feel like it’s a burden to do so – as a parent you’d do anything for the comfort of your child – but not being able to give comfort in a physical way is so hard.
As I saw their pictures on Facebook and read her blog, I felt this sense of complete desperation to fix this. To make it stop. And nothing can. Watching this unfold from the outside, and this time it wasn’t happening to us, was the strangest feeling. It was different from before my children died, because that was awful and sad still, but this time I also knew what was coming in the aftermath.
So when I heard Blake, just days before her 11th month, had passed away in her daddy’s arms at the park with her mama and sister by her side, I felt like I couldn’t breathe. It didn’t matter we all knew this would happen, it was still just as painful and shocking. I told Sam and after he went outside to process, he came back in and put his arms around me and we sobbed.
Because it’s awful, and because I know what happens next.
You pick out a little outfit. Maybe give a bath. You hold and love and kiss them and try to remember everything you ever wanted to tell them. You rock back and forth and wonder if your heart will stop because it’s so painful you can’t take it.
And you give them to someone to take away.
Then you wait. You know that for a few days, your child is lying alone somewhere, and it makes you insane. Every fiber of your being screams to find and hold them again. To take them away from that place. And you can’t.
So you keep busy and wonder how you’ll get up tomorrow, and one day (depending on what you choose) you bring them home. In a little container.
Just when your heart thinks you can’t take anymore, there’s just more and more and more and more. There’s the little girl who wants to know where her sibling went, and the phone calls for doctor appointments that will never happen, and the room that waits to be cleaned out.
It never ends.
So I know this and I hate that I do, but in a way (I fully realize I may not be able to articulate this right so bear with me) walking this horrible, tear-stained path with another mama is something my soul aches for. I would give anything to have my boys here, but since they can’t be, I’ll try to be there for someone else like so many of you were for us. I won’t do it perfect, but it’s all I can do to try to help ease the tiniest bit.
I know now how many of you felt. That sense of longing to fix this by any means. We had women offer to be surrogates for us, to help us adopt. We had money raised and food, gifts and cards sent. We had people fly to his memorial, drive hours to be there, and come visit in the following weeks.
This is a special family, and so dear to my heart. You may be following their story on Stephanie’s blog and if so, you know this too. Jeff is a medically retired Iraqi war vet. Stephanie was Bella’s first long-term sitter and came to us during the loss of Preston and Julian. I told Sam when they moved away that one day she’d be an amazing mama (and I’m right).
Today they pick up Blake. Oh you guys, it’s unfathomable to think about any parent doing this. I wish I could just take all of it away, let them sleep until the pain subsides.
But that’s not how any of this works.
Thank you for being there for us. Thank you even more for being there for them. Please keep them close in your thoughts and prayers today.
We are so, so proud of you Stephanie and Jeff. So proud of how your chose to handle something you didn’t have a choice in walking. So proud of your confidence in your decisions and the way you made her life simply perfect from start to finish. You are incredible parents and people.
I’ve set up a YouCaring page for the Reid’s to cover expenses and help them give Blake a wonderful Celebration of Life. She won’t get a first birthday, so let’s make this part as smooth and beautiful as it can be for Jeff and Stephanie.