I’m sitting on the couch watching the Masters — something that genuinely brings me joy right now, this new relationship I’m rebuilding with a sport that used to be everything to me. And underneath all of it, running quietly in the background of every single moment of this week, is fear. The kind that doesn’t announce itself loudly. It just sits there. In the back of every normal thing I do.
Making lunches. Driving to school. Folding laundry. Watching golf on a Sunday afternoon. The fear is just there, underneath all of it, waiting.
I keep watching Oscar. Studying him in that way that moms of medically complex kids will understand immediately — scanning, always scanning. Is he tired or just regular tired? Does his head hurt right now? Is that face he’s making nothing, or is it something? Is he acting like himself or slightly off? I hate that I do this. I hate that I know how to do this. I hate that after eight years of navigating his health I have become so finely tuned to the frequencies of his body that I can’t just watch my kid exist without running diagnostics in the back of my mind.
The thing that makes this particular week harder than some of the others is that we don’t have any information yet. We’re going straight to the MRI — no doctor’s appointment first, no conversation about what we might be looking for or what we might find. Insurance and referrals and the complexity of navigating multiple specialists across multiple states made it easier to just get the scan and then meet with his surgeon in May for the results. Which means I’m walking into today completely in the dark, and then I’m probably walking out of today still in the dark, and then I’m waiting until May.
The wait might take four years off my life. I’m being only slightly dramatic.
I work best when I have all the possibilities laid out in front of me — worst case, best case, everything in between. So here is where my brain has been this week. Best case: it’s allergies. A normal person would land there and stay there. I can’t, because these headaches are not allergy headaches. They are intense and they are familiar and they are the same ones that sent us to Chicago the first time.
Worst case: we don’t come home today. If it’s a tumor or something seriously wrong, I know they’ll send us straight to the hospital downtown and we’ll be admitted. I’ve thought about this. I’ve thought about what we’d do with the other boys, how we’d handle our commitments, what I’d need. I’ve actually considered packing a small bag with essentials just in case. I know how that sounds. But having a plan — even for the worst thing — gives me a strange kind of peace. It makes the fear slightly more manageable when it has somewhere to live other than just loose and floating in my chest.
What I’m planning for, realistically, is that we do the MRI and we wait. That we drive home today without answers, just the knowledge that it’s not an emergency. That we sit with the uncertainty until May. That’s not the best case. But it’s the one I’m preparing myself for, because I’ve learned that preparing for the middle ground is how you survive the waiting.
Oscar, for his part, is convinced he needs surgery. He also keeps saying it’s not a big deal and that he’s not nervous or scared. We’ve been talking about it with his therapist and trying to support him as much as we can. He has been through enough that his coping mechanisms are more developed than most adults I know, which is both a testament to who he is and one of the saddest things I’ve ever typed.
Maybe I need to borrow some of his coping mechanisms. We have been through really hard, really shitty things and we have survived every single one of them. I know we’ll survive this too. I need to say that like I believe it, not just like I’m hoping it — so let me try again. We will survive this. Whatever today brings, we will get through it. We always do.
It’s just that sometimes, in the middle of all the surviving, I just need a hug. Not advice, not reassurance, not someone telling me it’s going to be okay. Just someone to sit next to me on the couch while the Masters plays in the background and not say anything at all.
If you’re somewhere in your own version of this week — waiting for results, waiting for an appointment, waiting for the other shoe — I see you. The waiting is its own kind of hard. You’re allowed to be scared. You’re allowed to pack the bag. You’re allowed to sit with the fear and the joy at the same time, because that’s actually just what life looks like sometimes.
I’ll update this when we get home today. Thank you for being here. It helps more than you know.
xo, Lauren