If you’re the parent of a child with special needs, you’ve likely heard the statement “You look tired” many times. Maybe it’s at the end of the work day, or perhaps right when you walk through the door. Although you may have received the best night of sleep in weeks, you still can come across as a person who is chronically tired.
This winter, we spent a total of fourteen nights in a hospital over the span of five different stays. Due to my son’s diagnosis, he has medication complications that have rarely caused him to be hospitalized until now. I had forgotten what a couple sleepless nights in a row can do to a person. We were bringing “you look tired” to a whole new level.
Now that our hospital days seem behind us (for now), we have a new enemy of sleep in our house. Bugs. That’s right. For those of you familiar with warm Texas nights, you’ll know that the cacophony of insect sounds is impressive and apparently abrasive to some. As the seasons began to change and more bugs came to life, Eddie decided he wasn’t going to sleep with them making a racket outside his window.
He’d plea, “No more bugs!” “Goodnight, bugs!” “See you later, bugs!” After bugs, and then?!?” To which all we could share was an explanation about the insect life and how we wish we could go find one bug and put it out of its misery to solve our problem, but that bugs don’t work that way. There is never just one bug.
So, again, my husband and I find ourselves trading off sleepless nights and marveling at how Eddie seems to function on so little sleep when we’d prefer to crash by noon. I even found myself grumbling at a new mom on TV chatting about being tired with a two month old. My husband laughed as I cried, “2 months! Try not sleeping for 14 years!”
All of this extra sleep deprivation has reminded me that every family of a child, but especially children with medical needs and multiple disabilities, has so much happening on any given day. I want to focus on pushing Eddie towards a greater level of independence all the time. However, I’m also dealing with hospitals…and bugs. So, to you parents out there who have recently heard, “you look tired,” I look tired, too. Yet, that doesn’t mean we aren’t successful and thriving…just maybe on less fuel than everyone else.