Humans are capable of amazing things. One of those amazing things is the ability to adjust to just about any set of circumstances in time, and because of this I’ve found that eventually most things become normal for us no matter how challenging they are at the outset. If you told the me of 15 years ago, that one day I would have two medically challenging children and would deal with tube feedings and supplemental oxygen and home health companies and a slew of doctors and food allergies and heart defects and therapies and fighting with insurance companies and legislators and home health companies on the daily without missing a beat (well, not MANY beats anyway), I probably would have laughed (or maybe collapsed, depending on how seriously I took you). But the truth is, all of that is mostly normal now. It’s normal like the way waking up, having coffee, and going to work is normal to you.
A few years ago (and for many years before that), K was not doing so well. It was clear, daily, that she was a sick kid. Her incurable disease was present with us daily, BEYOND tube feedings and oxygen. She was a boat with a lot of leaks and we were treading water beside her, trying to keep her afloat. We were used to treading water, we’d been doing it for years, but we were keenly aware of the water being up to our necks. And then, somehow, we got a break. She plateaued. I think homeschooling had a lot to do with it, as she wasn’t constantly being barraged by infections. We slowly found our way to shore and K spent a couple of years mostly on the beach. The ocean was there, daily, we saw it. The tide came up and lapped around the bottom of her boat, reminding us it was there, but it wasn’t up to wasn’t spilling over the edges, or seeping in the cracks. Thankfully, the break came when it did, because as soon as we were back on land with K, we headed out to sea with Josephine, fighting different but not entirely unfamiliar currents. But again, things settled with Jo and we found our way to the shore…all of us, briefly. Mostly okay, mostly safe, mostly immune to the tide.
During that time K’s life became more about musical theater than medical appointments. She could go and do without us and we could assume she would be relatively fine, like most kids. Fun with friends and performing slowly became the norm. It has been fantastic. And it was frighteningly easy to adjust to and take for granted. THIS was one new normal we were thrilled to accept. It became easier to ignore the ocean, even as it lapped at our ankles. We were still dealing with the daily stuff that keeps K running, but it was just tube feedings and oxygen and check-ups, not tons of specialist visits and tests for issues we were struggling to fix for her or a steady decline in function like we had dealt with before. It was relatively calm.
Over the past couple of months, some new and old issues have snuck up on us. It was easy to kind of excuse at first, easy to ignore the rising tide that was pulling us back out to sea, but as time has gone on it has become clear. We’re back in the ocean. And it’s kind of….ugh…for lack of a better description. It isn’t critical, it isn’t even the deepest or choppiest water we’ve been in, but it sure makes us miss the beach. I was reading our Mito book the other day (trying to figure out some puzzles) and it said, “Some teens with Mito can suffer from profound setbacks during this period after years of a plateau…” And I thought, “No, please!” I just want this to be a blip and to get back to the beach. I know that isn’t the reality of living a life with a kid with a chronic, incurable disease, but still we want it. We want the plateau to stay. I know that our idea of super easy is baffling to some people, but tube feeds and supplemental O2 and daily meds are honestly nothing if your kid is functioning well with those supports…it’s when they start to falter in spite of your efforts that you feel the weight of things.
She missed a full week of shows for musical theater a couple of weeks ago, after a semester full of rehearsals for it. Last night she performed in her latest musical vignette night, but started to have intense leg pain during it and had to go take medication in the bathroom before her number. She’s struggled through her rehearsals with pain or other symptoms. Every day, she’s experiencing unfair and unpleasant issues, and we can’t fix it. I bought a planner today just so we can keep up with it all. We’re back to the days of tracking it all, hoping for answers or a pattern or something. I know from experience that we’ll adjust again. We’ve done this before, we know how to do it and do it well, but right now it is just kind of…ugh. But through it all, K is K. She’s still happy and pursuing the things she loves and doing her best, we are just longing for the days when it was a bit simpler for her to do those things…and waiting for our legs to get used to the feeling of treading water once again!
May 20, 2017 at 10:28 pm
That’s so beautifully written. I pray for your sweet K that y’all can rest on the beach very soon. Love you
May 21, 2017 at 10:18 am
Ugh. As soon as I started reading this, I started doing some math in my head and I thought “puberty”. I’m so sorry. You do what you do because you have to, but damn riding the Merry-go-round can be a nice break after multiple rides on the roller coaster. Hugs.
May 21, 2017 at 2:18 pm
We are also dealing with the effects of puberty over here and let me tell you…I’m not a fan! Hoping we all get through this relatively quickly! I much prefer the beach to the ocean!