To the Doctor Who Listened When I Said My Son With Down Syndrome Is Not a 'They'
We once had four medical appointments to attend over 12 days. Four. In the name of “health monitoring.”
“We must monitor his vision. Their eyes are commonly not working properly.”
Yet my son Rukai can spot a bit of fluff in the carpeting from 20 paces and immediately go to retrieve it.
A rattle of keys in the front door will turn his head. His eyes go wide and fingers point at the arrival of his daddy. Down the hall, I open the bathroom door. One door is quickly disregarded for the other, and he comes charging my way to interrupt, his curiosity piqued.
“We must monitor his hearing. They commonly have hearing loss.”
Pediatrician #1 could not confirm another issue, off to Pediatrician #2. I told P2 that over the years, we’d left off therapists and unnecessary appointments because Rukai drives his own development. We don’t want his default to change from easygoing, chilled, to pressured, overworked. We don’t want to strip away his autonomy.
He is free. He is driven. We protect that at all costs. And there he was only 3. A 3-year-old should play. A 3-year-old should not sacrifice his daylight to waiting rooms in search of issues which may-or-may-not-materialize. A 3-year-old should default to happy.
“Oh yes,” said He. “They are very happy people.”
(Except when he’s being a monstrous little tyrant, my good man. Come to ours when we’ve got a new menu item and watch me try to get it down him. If that’s happy, then Bozo the Clown got it all wrong and we’re living amongst the comedy of Pennywise.)
Saturday came, and we had appointment four of four: The Baseline Echo. Two years since discharge from cardiology at Great Ormond Street. Yes, that amazing place. Yet there we were having A Baseline Echo. Doctor innocuously suggested he may call us in for a follow up, and Tiger Mama pounced. The hell you will.
“He was discharged two years ago,” said I.
Doctor was calm. Doctor was the very best doctor I had come across in my entire 13 and a half years living in the U.K.
Doctor and Tiger Mama pointed and counterpointed and reached an agreement. Daddy sat quietly, watching, listening, asking. Best not poke a stick at this Quiet Man or he’d become Tiger Dad, and you wouldn’t want that tag team in a very quiet hospital that early in the day. Ever.
Doctor was calm. Heart too, was calm. Heart was fine. As we knew. Born with two holes in it, that day there were none. As we knew. No surgery required. As we knew.
Rukai 1 : Pessimism 0.
As we knew.
We left shaking hands. We left shaking heads. Four appointments. Twelve days. About 33 percent of our time over the better part of a month spent visiting doctors when there was and always has been pretty much nothing wrong. We are so blessed that he is so healthy. But he isn’t the only person with Down syndrome with good health. Down syndrome is not a disease. Rukai’s condition affects him according to his personal genetic makeup, and that is the only common thread we trust.
People with Down syndrome are not all the same. The fact is, there is no They.
Medicine calls it “health monitoring,” but it feels an awful lot like Big Brother. This is in no way “the life.” But this is The Life. We drop everything, we drive to and fro, we pay, we park. Doctors — strangers — poke and prod. Rukai thrashes and shouts. Cut it out. Quit poking me. You just weighed and measured me two days ago. Stop shining that light in my eyes. Get that thing out of my ear. That gel on my chest is cold. I was absolutely fine and you are now antagonizing me. Why?
They are not always happy. Damn it, stop suggesting it.
And stop calling my son They.
I told the Doctor (because he did drop a “they” early on in the conversation) that the services were awful where we lived, that those people were intrusive and patronizing and disrespectful.
They threw Rukai into a box labeled “Down syndrome” and discounted him. So we packed up and moved house to begin again.
(And seriously, who does that?)
“He is our son. He is our child. He is our world,” said I. “He is not They.”
And this Doctor, he nodded. He smiled and he nodded and he kept scanning for a problem that did not exist. He searched for one acronym, and I corrected him that it was the other acronym we were looking for, that the notes were wrong, that it was “column B,” not “column A.”
And this doctor, he smiled and he nodded and he seemed to get it. I wish for the world, that they all could get it. I apologized for my short fuse and explained at length why Tiger Mama pounced initially, and he understood. That was after he told me I was right. About the acronym. It really was column B.
And then he said it. “You just want a ‘normal’ life. If nothing is wrong, you just want to get on with things.”
We were there to check Rukai’s heart, and there mine may well have skipped a beat.
And so we agreed to a suggested check up five years hence — “suggested” being the operative word; no “mandatories” here.
Thank you for hearing us.
Thank you for listening to us.
Thank you for understanding us.
I told him where we came from and to where we’ve gone.
I told him how bad it was there and what we endured.
My words did not ricochet off. They nestled in and had a cuppa joe.We turned to go, and Rukai turned towards him.
We turned to go, and there was a high five.
We turned to go, and Rukai reached out. To the Doctor who Reached Out.
Rukai climbed into his lap and delivered a cuddle.
Rukai is the world’s greatest BS detector, and that cuddle was there for the giving. To the Doctor who Reached Out.This is The Life. But Rukai is now very firmly in the driver’s seat.
Thank you, Doctor.