Health is not valued until sickness comes

“Mom, I don’t feel good.”

The dreaded words that make every parent’s heart ache for their kiddos. And then there is me. Broken hearted every time he says these words and I know his healing and recovery will be twice as long as kiddos his age.

A CF’er already has the struggles of feeling like crud every day. When a cold comes around it magnifies everything. A runny nose makes me wonder, is it a sinus infection? Nasal Polyps? How much harder will this make him breathe? A fever – o boy his body is really fighting something off.

And then there is the cough.

As a CF parent, we are so in tune with our kiddos we can tell how bad things will be based off of their cough. Is it their normal throat clearing? Is it nasal drainage? Is it CF getting worse? Is it pneumonia? Is it a respiratory infection? Is it RSV? And you become the ultimate helicopter parent. When do we get the PCP team involved? When do we notify the CF Team? Ope – he coughed, is it dry or is he moving things around (exhausting).

An option we do have in our back pocket as CF parents is that respiratory treatments that are prescribed to others are already setting in our living rooms. We usually add a vest treatment and a few extra neb treatments to make sure things are still moving and he can get it out of his system. These treatments themselves can be exhausting in itself, so caution is taken into consideration.

One thing that we have to be ultra careful on is OTC medications. Normally, for us we would take a cough suppressant and a nasal decongestant. Well for CF’ers we don’t want them to stop coughing otherwise everything is sitting in their lungs. So Maddox has been toughing it out without any medications.

For Maddox, when he’s sick – sleep is his biggest helper. But if you have met Maddox, FOMO (fear of missing out) is in his DNA. He will stay awake until you have to literally turn off the lights and tell him to go to bed. He’s the same way when he’s sick. Thankfully, he can put a movie on and now he is learning to relax and pass out. Sleep is the biggest thing he needs for his system.

Maddox has a great support system for him at school too as they also have been noticing that if his cough changes, they will let us know. They will let us know when he’s a few steps behind his normal self too.

When I was sick, we had saltine crackers, sprite (with a bendy straw) and Bob Parker during the price is right. Now, he has whatever show/movie he wants to watch at his finger tips and we push for gatorade/powerade to keep his electrolytes up. And of course, beloved Blue Bear.

As parents, we are always putting Maddox in the opportunity to catch the common cold. It’s a risk we are navigating the best we can and also ensuring that Maddox is still able to experience everything that life has to offer. And we are learning how to help him heal as fast as we can.

Naps are glorious!

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