My family has been staring down rare disease, arming ourselves against the regular onslaught of bad news for a long time.
When you’re hit with a rare disease diagnosis….
When rare disease invites itself into your house and won’t leave…
When your notion of normal becomes permanently tinged with a “but”… you live differently, more realistically, allowing your once limitless optimism to deflate down to realism.
At some point you stop hoping for good news, because it likely ain’t comin’.
A large pituitary tumor was the tidal wave that washed normal out of our lives. Most of you know that our struggle to confront my son Adam’s diagnosis is at the core of a memoir I’m working on.
Since the first MRI found the tumor, I’ve poured over blood results and MRI reports on a regular basis. So today when a hospital portal announcement told me that a new result had been posted for viewing, I opened it immediately. My instinct to act revived, after habitually checking the clock to assess whether the action I might need to take could happen before specialists leave their offices for the day. I clicked to open the report, and scanned for the key words. Those little words, so deftly chosen by the radiologists and pathologists, mean the difference between sleeping tonight for parents of #rarekids, or a wakeful coffee-fuelled all nighter searching for the name of global experts or clinical trials. I’ve done too many of those all night web scans, just me and Google. But it’s our job, we parents of rare disease kids. It’s what we do while we stand on guard for our exceptional kids.
I scanned tonight…there was the notation regarding the status of his brain, always the source of giggling and snickering to my son Adam and I. (Dark humor is all part of our coping strategy). In MRI lingo, when the brain is not compromised or impinged upon in any way that might be considered a concern…it’s just
I always take full advantage of getting some mileage out of that one–
“Hey Buddy, your brain is still unremarkable…nothing special at all.” It’s one of innumerable jokes he and I have. Conversely, we have also lowered our expectations together appointment after appointment, because there has never been much good news.
Today was no different really.
Then two words leapt off the page, and my stomach rose to my throat…
Our notion of normal is so skewed, that other people might not celebrate those two innocuous words, but for us, its a moment we’ve waited for, that he has suffered for, that we have endured so much for.
“It’s just a little good news,” he says. “But I’ll take it every day of every decade.”
And flashes me the same smile he has since the day he was born.
It’s a really good day.