The past few weeks have thrown me for a loop, and it all started with a few sick days. Not me being sick (initially), but my son. In some ways, this is the story of any parent whose child is home from school for a few sick days in a row, maybe with a little more “intensity” than the norm. In other ways, I suspect, it’s a different story altogether.

I am the mom of two kids, one with special needs, and this post–longer than most–is a window into our life.

Going back to sick days

It all started three weeks ago yesterday, on October 28, when Isaac stayed home from school with a GI bug. No big deal, right? Happens all the time. A child missing school because he’s sick. But right from the beginning, I was reminded of our life a few short years ago, when Isaac was younger and everything was hard. I literally went back there, as someone does with PTSD.

In those days, Isaac was sick a lot more often and struggled with dysregulation at school and at home. I knew I might get a phone call to come pick him up at any moment, every day. I felt little freedom, even when the kids were in school, because I was truly “on call” at all times. There was an underlying, ever-present stress that took up residence in our home. It could go from peace to chaos in a split second with no warning whatsoever. Over time, we learned strategies that would help us, but the looming inevitability of crisis was our norm.

It’s not nearly as challenging now as it was then (ages three through seven were the hardest, I’d say), but even a hint of going back to that time can undo me. And that’s exactly what happened over the past three weeks.

His week(s) vs. mine

The week of Halloween, Isaac was sick Monday through Wednesday and out again on Friday for a teacher work day. Home three days of a four-day week. That was round one, the GI illness. The next week, on Tuesday morning, the school called to tell me that Isaac had fever and needed to be picked up. He came home with me that day and missed the following day, too, returning to school on Thursday to finish out the week.

While at home, Isaac watched cartoons, played on his iPad, played in his room. He rested quietly on the couch and took at least one nap every day. As a mom, I really couldn’t have asked for more. Isaac was a near angel. I, on the other hand, didn’t fare so well.

Almost reflexively, I returned to that harder time, where something disruptive could happen at any moment. I was on guard, vigilant, occupied. I stayed on top of the laundry, meals, and dishes but could barely achieve the state of flow necessary to do any of the creative work that I’d planned. Somehow, though, I did power through to publish my last two posts, The Scariest Thing about Halloween and Physician Mom Crafters (PMC) and Me, one each during Isaac’s first and second weeks of illness. Two small victories.

Lesson learned

I suppose the takeaway here is that I can work now when my children are home sick, even if my brain still needs some convincing. (Or forging of new neural pathways, in epigenetic language.) Significant variables have shifted for the better over the past few years, and it’s up to me to live into the new norm. Lesson learned.

But we’re only halfway through the three weeks.

Mom’s sick days, and another battle

By the end of the second week, I was feeling sick myself. I had a deep cough and general sense of fatigue from the previous two weeks of postponed plans and cancelled appointments and the stress of “keeping watch,” whether necessary or not. It’s an exhausting way to live, even temporarily. I’d missed my morning walks more days than I’d had them. And I was struggling, mentally and physically.

That Friday morning, November 8, I sat with my computer and a tall glass of water, hoping to work up a blog post that could speak to the previous two weeks. Then I spilled the tall glass of water all over my laptop! (Insert “Bless her heart” here.) Lucky for me, just three days and $125 + tax later, the computer would be back at home and working fine.

Isaac, on the other hand, was not fine. When I picked him up from school on Friday afternoon, he was coughing, a tell-tale sign that asthma had kicked in. Isaac’s cough may sound innocent enough, but we know from experience that asthma, tacked onto an illness, can spike from minor cough to seven-day hospital stay in a matter of hours. When Isaac coughs, we pay attention.

Cough-variant asthma

Isaac was diagnosed with cough-variant asthma around two years of age, and it has been his single most challenging health concern from the time he was a baby. Like so much else else, the asthma is much improved and nowhere near the problem it once was. But Isaac still has flareups from time to time, and this one was a bad one. Usher in week three.

So what does asthma look like (at our house)?

The nights are the worst. Inevitably, when Isaac puts his head on the pillow, the coughing picks up. So the first trick is to calm the cough enough for him to sleep. That requires getting ahead of it with “control” and “rescue” inhalers around the clock and a well-timed prescription cough syrup we discovered several years ago. If we don’t stay ahead of it–and sometimes even if we do–the cough will end (temporarily) in vomiting.

One of us has to sleep nearby, so we’ll be there immediately when the medicine wears off and the cough resumes. At the first sign of coughing, we re-administer inhalers and Rx syrup, keeping the garbage can nearby just in case. And we do our best to be patient and caring despite our own interrupted sleep. (And in this case, two previous weeks of interrupted life.)

Knowing I wasn’t feeling well at this point, Todd took the first and hardest two nights of asthma duty and managed to avoid any vomiting, which was a win.

Asthma and dysregulation

Then there’s the daytime. A small, persistent cough, and big, unexpected outbursts. (Yes, they’re connected.) We go so long now between bouts of asthma that it’s easy to forget about the behavior that has always come with it at our house. It looks a lot like oppositional defiant disorder, which Isaac does not have but seems to default back to, without warning, when asthma is present. (Maybe asthma is the warning.) And because we’ve forgotten to anticipate it, we are surprised and thwarted all over again. Aren’t we past this? we think. Why is he acting this way?

A brief aside: Several years ago, we removed gluten and other inflammatory foods from our diet, as many families with a special needs child do, in hopes of better behavior outcomes. After a few months, we realized (to our surprise) that Isaac wasn’t having chronic, daily asthma anymore. We didn’t see dramatic changes in his behavior, or what I would now refer to as dysregulation, but we did see less of it overall. I’m no doctor, but it seems to me that reducing inflammation generally had the effect of decreasing one of Isaac’s primary triggers, which was simply not feeling well. This isn’t why we started the diet, but it is why we kept doing it and do still. 

It makes sense when I think about it–detached–that feeling like his breathing is constricted would make a child angry, contentious, oppositional. But in the moment, it’s easy to forget what Isaac is feeling in his body and respond only to the way he’s acting. Especially when we ourselves aren’t feeling so well and our patience is running thin.

Moms get dysregulated, too

At some point, the outbursts, insults, and refusal to cooperate become more troubling than the asthma itself…until we (the grownups) are able to shift and remind ourselves what is actually happening. You might think that would be an easy thing to do. But trust me. It’s not.

Despite the asthma, Isaac was back in school all week last week, Monday through Friday. Theoretically, I had time to do all of the organizing and writing I’d intended to do the previous two weeks. But I had nothing to give.

I squeezed in four days of exercise, but each one was a battle. I struggled to write, and not for lack of trying. As I sat with my computer to devote time to my blog, my goals and aspirations, I found myself questioning why I entertain them at all. I can’t even handle a few sick days. Can I really keep up with a blog? Why am I creating work for myself to do?

It was somewhere in this mess–in the middle of an oppositional moment, Wednesday, week three–that I snapped at Isaac. Mom, unraveled. Followed closely by guilt and self-loathing and a recognition that I’m not getting enough support. Later that day, I glanced at my calendar and saw this entry for Thursday morning: “8:30-10:00, Parent Support Group at Isaac’s school.” Talk about good timing.

Moving forward

For much of week three, I was stuck in a downward spiral of negative thoughts and emotions that I couldn’t so much overcome as outlast. And thankfully, I did.

Yes, I am a trainer in a parenting method. And yes, I still need support. I make mistakes like every parent on the planet, because this parenting business is hard. What I need and am finally getting after these three weeks is a great big “Reset,” one of the many gifts of Nurtured Heart Approach®. Because every moment is a new opportunity to start again.

The Parent Support Group meeting on Thursday was good for my soul. (Post forthcoming.) And this week, finally, is what last week could not be. I feel pulled, again, to do what I’ve set out to do with Gray Colored Glasses, to promote more understanding, awareness, and compassion, especially for families of children with special needs. Like ours.