It’s because I know what COULD happen…

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.

 

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Yeah, we do know better. Praying, praying he’s just playing with you. Glad he can keep something down and hope that tonight’s a bit better. I know you’ve got lots of people around, but we’re just up the road and I can pick up or drop something by if you need it. (Or send one of my little (big?) elves.)
    Rebekah recently posted..Long, long weekMy Profile

  2. Kelli- Adventurez says:

    I’m so sorry you have to even stop to ask people to cut you some slack- good grief! God bless y’all – I’ll pray for your Parker and for you to have extra support and encouragement around to strengthen you! You deserve a break today! :) hugs-

  3. But, don’t you find that your fears for your medically fragile carry over to your other kids?? What I mean is, sure, my 8 year is typical and usually healthy, but that bladder infection MUST mean something horrible and huge because that’s what CAN happen, right??? That is my battle. If I can just keep all the medical issues to one child, maybe I can cope, but I just melt when the other 2 join in the fun…

  4. The anguished journey of waiting for the other proverbial shoe to drop is long and leaves us ragged. I wish that many knew to respect that and respect us when we are concerned that we have valid reasons. Very valid reasons.

Speak Your Mind

*

CommentLuv badge