Even in this beautiful place at the ends of the earth, I cannot escape the crushing worry that steals my sleep.
I get up every morning to watch the sunrise. It’s my favorite part of the day down here. There’s only a handful of people that I can see, so far away that they look like they’re meant to be a part of the landscape to make it even more beautiful. A smattering of people dotting the beach. They’re likely just like me, seeking solace in this time and space.
The closer we get to the start of the school year, the heavier the worry feels. Worry is no stranger to moms of kids with disabilities. I think it becomes our constant companion, sometimes making itself known in tangible ways… lost sleep and a heaviness that weighs you down even if you can’t hold it in your hands. Other times it’s like a tickle, this vague, nagging feeling that you forgot something, until you again remember what you should be worrying about.
Questioning myself always. Medical worries, school worries. Projecting into the future. Will he have a girlfriend, get married? The rich, meaningful adult life that he wants? That we want for him? Will others see him the way we see him? What happens when we’re gone? Why is he always so tired? Do we do another sleep study? Change the CPAP mask and pressure settings? Will this be the year that his heart valve leakage gets worse and he needs that second open heart surgery? How’s his hearing? Does he need ear tubes again? Can I find a gluten-free restaurant where we’re going? Did I grab a gluten-free roll? Where is the darn prescription for his new glasses? Should I get him one pair or two? Will he make new friends in middle school? Will someone want to eat lunch with him or walk to class with him? Will he be seen as a middle schooler, or a kid with Down syndrome? These were all my worries before Covid.
So much worry that it’s woven into the fabric of who I’ve become as a mom, as a person. It extends to Joey in all ways too… but not in any ways he would want me to share in this space.
I’m used to this. It’s a privilege to be Ian’s mom, to love him. To raise this young man who shatters stereotypes and is fully, completely, confidently who he is. Who doesn’t worry about anything, never questions himself. He just gets out there and does it. He has challenged every idea I ever had of humanness and growth and the meaning of all of this.
But heading into this school year, with everything feeling so much harder than it’s been since the start of the pandemic, is a new kind of worry. As moms of kids with disabilities can relate, we’re used to having to rely upon others to see our kids as capable, as worth the extra work. But this time, we’re also relying on others to keep them safe. Before we could fight for our kids; now we just pray. And hope. Talk to our doctors. All the specialists. More than once. Talk with each other, bond over our shared worry. And then pray and hope some more. Because if we get this wrong, it can go really wrong.
I cannot tell you the immense gratitude I have that our family is fully vaccinated. While we’re still so careful, it’s opened our world again and been the balm to the hurt of the past year. But then the worry sets in… did Ian mount enough of an immune response? I scour his old lab work where we checked his response to other childhood vaccines. Look at the patterns of his persistently low white blood cell count. Agonize over his low lymphocytes, the largest amount of while blood cells we have, and realize he’s never been in the “normal” range. Analyze patterns of his neutrophil counts. Worry about breakthrough infections because everything is so bad right now. What would that look like in someone with Down syndrome, with all his medical needs? I already know of the poor outcomes of people with Down syndrome who got Covid before vaccines and, presumably, better treatment. I talk with our immunologist… virtual visits and My Chart messages. Asking about all the what-if’s.
Oh, those what-if’s. Will everyone wear masks? What if they don’t? Will there be distance? Ventilation? Open windows? What mask to wear? What do I do about lunch? Our cafeteria isn’t connected to the outside for fresh air. Can Ian safely eat with a friend? What if he cannot? (Ian thrived with virtual learning but every time you ask him the hardest part, he will say one thing — his friends.) Am I doing the right thing for my child? The best thing? And don’t get me started on how I worry that Jason, Joey and I are doing the right thing…
All the questions. Seeking a peace I will not find. It’s exhausting. I do try to compartmentalize and tuck my worries in a box up on a shelf in the closet. And down here, it’s been easier to do that, to find long moments of time and space to exhale and clear my mind. But eventually that box will fall off the shelf and spill open.
So I go back to the sunrise. Every time I watch it, I inevitably think, “it’s actually me that’s moving.” The earth, slowly spinning, giving us glimpses of its beauty. I know this too shall pass. We keep moving. Forward. Slowly but forward. We will get there. But right now, I’m stuck in this incredibly vulnerable spot where no decision feels like the right one.
Stuck. Vulnerable. Exhausted.
This photo doesn’t capture the true beauty of the sunrise and my words feel similarly inadequate. But just like the camera on my phone, I’m doing the best I can. I think. I hope. Fellow moms carrying this weight, I’m carrying it too. You are not alone.
