Rare Rollercoaster

So here’s the thing.

Being a parent of a disabled kid sucks.

Especially one with a rare genetic condition.

Let’s just throw in a condition that only 800 people have…..world wide….to make it more interesting.

Don’t get me wrong. I love my kid from here to Timbuktu and will move heaven and earth for him. But its just not what I envisioned when I dreamed of having kids.

You might be thinking. Wow. I can’t even imagine what its like to have a disabled kid.? Well here’s a glimpse into my life. Its like the craziest roller coaster you’ve ever been on.

Shoot out of the start with G forces: Diagnosed. Crap. Are you fucking kidding me? The air is taken out of you.

Going up the first steep climb: What’s on the other side? Am I going to be ok? Is my son going to be ok? How is this going to go down?

Go down the first steep decent at mach 80: WFT do you mean there is no known cure? Why don’t you know what gene causes it? When will there be a cure? How do I deal with this?

Straight away for a bit: Become a non voluntary med student immediately. Learn as much you can about genetics. Become best friends with researchers. Focus on each day as they come.

Next steep ascent: Fundraise, fundraise and fundraise. Because no one just gives you funds for research for a rare disease.

At the top of the highest ascent — such a beautiful view: Gene discovery! I can just see a cure for my beautiful boy.

Downhill to a corkscrew: Head slam…pneumonia….hospital….ICU….ventilator….will he live?…will this ever end?

Straight drop down: What do you mean “Compassionate Withdrawal”?

Straight up: Miracle. He is getting better. He will live.

Another straight away with a gentle climb: We’re going home. Its going to be yet another new normal. Tracheotomy, Ventilator, Oxygen, Nurses invading my home 24 hours a day….all in addition to a rare disease.

In corkscrew mode constantly: That’s what my life is like now. Sure there are some straight aways in there too. I’ve now learned to cherish the straight aways.

The roller coaster is endless and the only time I will be able to get off is when the ride is over…literally. And that is when I will wish I was still on the most terrifying roller coaster of my life.

Learn more about rare diseases at the National Organization for Rare Diseases www.raredisease.org.

Learn about a disease a that effects only 800 people worldwide at the International FOP Association www.ifopa.org