Being a medical parent is an exhausting experience to say the least. The easiest way I know how to explain it to people outside of our community is that it is like raising a newborn indefinitely. A lot of sleepless nights, anxiety, and round the clock care.
The mental exhaustion can be a lot sometimes.
I am often told “special parents get special children” but I’d be lying if I did not say that it feels like they were just saying “you got this” when in reality a lot of us really don’t “got this”. Reassurance can be great, but sometimes it can be difficult to receive when you are struggling to keep your head above water.
As of late sleep (or lack the there of) has been a real wrench thrown into our daily lives. It’s something I have seen to be a common issue amongst other kids in our community, but until recently we have been fortunate not to be burdened by it. Suddenly our daughter’s sleep patterns have become completely erratic, and the entire family feels burned out. We now seem to drag through our days in a complete fog.
Sleep deprivation can be particularly unwelcomed when you are already balancing a loaded therapy schedule; not to mention all of the other needs a medically complex child requires. It’s hard to motivate yourself through the day on an empty tank. Also, the summer of 2020 has left us without a lot of our support team that has helped carry us through times like this.
It can be incredibly difficult, because I am my daughter’s every move.
If she is playing it is because I have carefully positioned and repositioned her to be able to interact with her toys. She is fed through a surgically implanted tube in her stomach (gtube) so every ounce of nutrition she receives is through frequent and time-consuming feedings. A parent of a medically complex child cannot check out because they are tired. It is a not a luxury we are afforded.
As with a lot of things, the hard times come with an ebb and flow. There are certainly more good times than bad. I write this in the midst of sleepless nights, but we have been here before. I know we will see the other side of this (hopefully sooner than later) and return to our normal routine. Until then may the coffee gods ever be in our favor.