By Kate
My journey to motherhood was pushed into warp speed when I was diagnosed 8 years ago. In 2014, I had just gotten married and started having vision and grip issues which led to my eventual diagnosis of MS. Before any treatment was considered, my initial doctor (a lovely human) asked what it was I wanted for my life. I told him I wanted to be a mom. His response: “GREAT! You have 8 months to get pregnant, and if you don’t, I suggest we start treatment and reassess how and when to stop treatment in order to try again in the future.” This was good news, but like, no pressure, right?
My first son was born nearly a year later and my second 16 months after that. I have two beautiful boys who I have brought into a situation where their mom is sick and (potentially) always will be. This is a tricky thing. On the one hand, they are immersed in a world that fosters empathy, support, independence, patience, and acceptance. On the other – a potential for uncertainty, pain, fear, and loneliness.
Today they are 5 and 6. They know they have to be mindful of when we go play outside (heat intolerance), and they stop to rub my back when the pain sneaks in. I’ve never hidden the fact that I have MS. I want to be honest and open with them while also making sure I don’t scare them. Our conversations around this will change over time as their ability to understand increases. For now, I bring them to minor appointments, show them scans, explain the science, and make sure that they understand that having MS doesn’t mean I’m dying. Wow, that was hard to type. And maybe hard to read? But it’s the truth, and I tell them very clearly that I am sick and that while everyone does eventually die, this is not the kind of sickness that ends that way for me.
There are many hard parts about motherhood and MS – like missing out on activities and disappointing the kids with a quick change in plans. The hardest, by far, is the thought of them having to take care of me as I age and them growing up with feelings of sadness or fear around my health. But I can only do so much. I ultimately can’t control how they experience the world, their feelings, their truth. All I can do is fill them with an unwavering sense that their mother loves them. More than she ever knew she could love anything or anyone at all. She sees them for the unique, strong, loving, fun, exuberant beings they are, and she’s going to be along for the ride in the fullest capacity she can be for as long as they’ll have her.
I’m trying to imagine how moved I’d be by this piece if I weren’t Kate’s uncle, or even if I’d read it at all. But it moves me hugely and I believe would just as much if I didn’t know Kate and the boys. Kate couldn’t be a more thoughtful, intelligent, compassionate person, just couldn’t. I’ve had various types of blood cancer, twice pronounced stage 4, for almost 25 years now, been unable to do much here and there for months in end, so I can relate at least in part to what it’s like waiting for the proverbial shoe to drop. Two things, though: I’m old, somehow having made it to 75, and my kids are grown and on their own. They grew up with my precarious health always in front of them, but like Kate I was and an up front about it all, and though I’m sure they carry some dread around with them, they’ve adjusted very well—maybe better than a lot of young people, more grateful, more aware, more real. Whatevs, like they say. I love you, Kate, always have, always will. You’re always in my prayers. Dig ya, Uncle Mike