Bedtime Stories with a Rare Disease Mom

I couldn't read, "I love you, right up to the moon and back," without thinking that the moon would always be there, but my child would not.
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An open hardback picture book, on a pine-coloured desk, in soft focus.
An open hardback picture book, on a pine-coloured desk, in soft focus.

We can recite our favorites by heart.

"In the great green room, there was a telephone."

"I love you, right up to the moon and back."

"If you give a mouse a cookie, he's going to ask for a glass of milk."

My youngest son always loved bedtime stories. Then, at 2 years old, he was diagnosed with a rare, deadly genetic disease called Hunter syndrome.

That was the day the bedtime stories stopped.

I couldn't read, "I love you, right up to the moon and back," without thinking that the moon would always be there, but my child would not. I couldn't read, "As long as I'm living, my baby you'll be," because in all likelihood, my child would die well before I did. He wouldn't be the adult eerily holding his aging mother on his lap. He wouldn't be an adult.

Bedtime became snuggles and tears. Long hugs. Made-up songs to make him laugh. I never just waved him off to bed, for I suddenly knew the reality that all parents should realize:

Someday he just might not wake up.

But in honor of upcoming World Rare Disease Day on February 29, I've returned to bedtime stories, but in our world:

If You Hear Your Child Has a Rare Disease
by Melissa Hogan

If you hear your child has a rare disease, he's going to need a cure.

To find a cure, he needs a doctor. If you find him a doctor, he's going to need a nurse. When he's finished, he'll need a speech therapist, an occupational therapist, and a physical therapist.

Then he'll scream whenever he sees a hospital, a doctor's office, or a therapy clinic. When you go to those places, they'll tell you he needs surgery. Or medicine. Or sensory items. Or an IEP.

So when you leave, you'll call the hospital, the pharmacy, and the school. You'll start pulling your hair out. You might get carried away and take a Xanax. You may even end up in therapy.

When you're done with a few therapy appointments, you'll realize you need to get your shit together. You'll probably want to take a nap, crawl into a little box with a blanket and a pillow, and read a story, like a mouse would do, but there's no time for that.

So you'll curl up with every research paper on your child's disease and every potential treatment. Your child will ask to see the pictures. But the pictures of his disease progressed are too scary, you don't want to look at them, much less show him.

When you peek at the pictures, you get so scared that you want to vomit. So you ask for a bucket. The black hole of the bucket makes you realize you need a plan to get out. So you ask for a pen and paper. You make a plan to save your child. And you want to hang it on your refrigerator. Which means you'll need duct tape, because nobody should ever f*ck with your plan. You seal that plan in place and stand back to look at it.

Looking at the plan will remind you that your child has a rare disease. And that he's going to die unless he gets a cure.

And chances are, if he needs a cure, you'll need research on mice. And those mice won't get cookies.

Once you have research on mice, you'll probably need a drug company. And if you need a drug company, they'll need years to perform clinical trials. And once they do clinical trials, they'll need approval from the FDA. And once they get approval from the FDA, you'll need to convince insurance companies to pay for the drug, which likely will cost several hundred thousand dollars per year.

And chances are, if your child has a rare disease, all of that won't happen in his lifetime.

So when your child asks for a cookie, you'll give him a cookie, a glass of milk, a straw, a napkin, nail scissors, a broom, and some scotch tape. You'll trim his hair, fluff his pillow, put him down for a nap, read him a story, show him the pictures, let him draw a picture, and hang it on your refrigerator with duct tape, right next to your plan.

Because when it comes down to it, seeing that picture every day is just as important as seeing the plan.

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