that tends to make me a little freaked when Parker gets sick.
As a new parent of a medically fragile child with special needs I was familiar with typical childhood stuff. Chicken pox. Colds. A broken arm and two rounds of stitches.
But then Parker was born and suddenly things I didn’t even know were possible started happening.
Who knew a kid could be born with a tush that needed several surgeries to repair? Or a disease that caused lung pressures so high as to cut a young life short. Very short.
So when Parker gets sick, Reed and I tend to begin the ritual of battening down the hatches. Preparing ourselves for the potential long haul.
Because we now know what COULD happen. All the possibilities that had never even had crossed our radar almost 7 years ago.
I’ll tell ya. It makes my blood pressure go wonky just thinking about all the things I now know are possible.
I’m not sure if I’m it expressing this correctly, but having a medically fragile kid with special needs kind of takes all the innocence out of being a parent. Sure, when you have kids you expect the regular illnesses. A broken bone from playing trapeze artist on two over turned chairs. (Hello, McCall.) A funky rash here, warts burned off there. You pray they make it to the puke bowl in time and that the stitches don’t leave too bad of a scar.
The minute they put that medically fragile baby in your arms, only to whisk him away and Life Flight him to PCMC two seconds later, everything changes.
Not many parents understand this fear. They look at your kid and think, “It’s the flu. Big deal.”
You know better.
It’s the flu that could break the Nissen. It’s the flu that could cause yet another aspiration pneumonia. It’s the flu that could weaken your medically fragile kid to the point of a lengthy PICU stay.
For the parents who are still lucky enough to be able to be grateful that ‘it’s just the flu’, be gentle with those of us who have experienced what COULD happen. Cut us some slack if we cancel an appointment or don’t make it to church on the Sunday our kid is running a fever and can’t keep anything down after a night spent trying to puke their insides out. Sometimes it takes BOTH parents tag teaming it to keep things from going down the drain.
Try to understand that because we know what COULD happen, we also know to take all the precautions necessary to try and make sure what COULD happen…..has happened before……hopefully (this time) doesn’t.
PS: We are still waiting for the cultures we had ran on Friday to come back and hopefully tell us what is going on with Parker. He had a very rough night Saturday night. He spent most of it trying to gag and wretch his Nissen up. Today, with the help of Zofran, he’s kept a mixture of canned formula and pedialyte down. The stuff coming up from his trach continues to be unbelievable.