The day Marcus was born, and I was given that book, I remember these two things from page one: First: “Do not put your child in an institution.” Wait…What!?! No one is putting my child anywhere, what are you even talking about?
Then secondly, the average life expectancy of a person with Down syndrome was 30 years.
Keeping in mind I was 19 years old at the time, do you remember what 30 looked like when you were 19? There would be plenty of time.
Now, I don’t have to tell you how quickly time passed and continues on.
Last week my Marcus turned 29 years old.
By the way…When I co—authored a new version of that book, the one that now goes to new parents, we did not include a life expectancy. There are reasons for this, one is that the most commonly touted new age expectancies are actually only applicable to white people. So, while it is good news that white people with Down syndrome are living much longer, the bad news is that people of color with Down syndrome still have a life expectancy of about 30 years, or less. The worse news is that no one seems to know why, and it is little discussed or researched. You can read more here: “Why you won’t find a Life Expectancy Stat in The Parent’s Guide to Down Syndrome.”
In Marcus’ adult life, we’ve all made strides to be more conscious of healthy decisions. We, as a family, take better responsibility for our wellness and are trying, trying, to balance between the momentary pleasure (of cake, or pancake, or lounging around on a rainy or snowy day) and the benefit to our health that better foods/fuel, moving our bodies, and so on. We are far, far, far away from ideal, but better and better at balance each year. I mean it’s been years since Marcus considered a pop tart breakfast and I considered a coke and Pringles lunch. So, ya know, progress.
I get flack for the “Overscheduling” the “trying to do too much” and yet, my momma friends understand, “We just don’t know how long we have with our guys; we have to take every moment we get.” Sure, no one knows how much time they have with those they love, but most other families assume they have lots of time. I don’t.
Sometimes I’m Scared
I’m going to tell you something I haven’t told you before. A few years ago, when Marcus had his routine visit with the cardiologist, the doctor told us to schedule annual visits, instead of every 5 or ten years, as we had been. My brain shortcircuited. Why do we need to come for annual visits?
What I heard was:
Something something ventricles, just checking, something something valve, watch for…something something fluid, weakness, shortness of breath, arrhythmia, symptoms, see you next year.
The doctor drew a picture which I carried in my wallet, just kind of torturing myself.
When we went back to the doctor this year, he said, “Things look great! Know what? Let’s make it two years ‘till the next appointment.” I didn’t gather that anything was really different. Just, guidelines changed, I guess. But I was sure glad to hear it and moved the picture from my wallet to my desk drawer.
On Time, In Time, About Time
In my work life, I write a series called “Speaking of Time” about time management and suggestions for making the most of time. I’m obsessed with time and squeezing more of it out of life. You know who else I think is obsessed with time? Lin Manuel Miranda. While writing this piece I’m hearing the lyrics and song from Hamilton when Eliza sings, “You could have done so much more if you only had—Time. And when my time is up, have I done enough?”
And when my time is up Have I done enough?
Crazy Go Like a Hummingbird
I’ve shared before about hummingbirds, they flit and flit in a frenzy. As a child, I was told that hummingbirds shouldn’t be able to fly. Their wings and the proportion of their bodies and so on…it’s like they don’t know they shouldn’t fly, so they do it anyway. I’ve always loved that concept. (Wrote about it here, too.)
We go, go, go like a hummingbird. In the “artist notes” of this photo.
I find in life we go – go – go – go – moving faster than science says we can.
But not really moving much at all . . .
Then, when it come’s time to nurture, well – then it’s time to be still.
With age, my body forces me to be “still” more than I’d like, but my mind buzzes like the hummingbird wings. My next steep learning curve is to accept stillness for my mind and soul as well. Sometimes we have to allow stillness to nurture our own soul. I have a long way to go…
This has been a year of moving but not really getting anywhere at all. For those of you following along, you know my mother died earlier this year and I have not coped in the ways I expected. I’ve been less than my normal “responsible” self. I’ve got to get organized and get shit done. Instead I’ve been a lot of frenzy but not moving forward.
Still, I’ve made the effort to keep Marcus on schedule and keep the gigs.. In fact, Marcus and I are speaking at Fine Lines writers camp today. I’m excited to talk to the kids and grownups about our journey as creators. Although I’m nowhere near the perfectly setup success, we do have successes and we are still learning and creating. So, there’s much to share!
My next big advocate gig is in Nashville and I’m very much looking forward to it. We’re starting to work on the Fall line-up – as that’s Marcus Season!
When is the time to be still?
I will, I will, I will! But not quite yet. I just keep thinking we can still fly…
Now I’m reminded of this lovely song by Mary Chapin Carpenter:
In this world there’s a whole lot of trouble, but
A whole lot of ground to gain
Why take when you could be giving?
Why watch as the world goes by?
It’s a hard enough life to be living
Why walk when you can fly?
Which then reminded me, we went to her concert in Omaha for Marcus’ birthday about this time last year.
In this world you’ve a soul for a compass
And a heart for a pair of wings
There’s a star on the far horizon
Rising bright in an azure sky
For the rest of the time that you’re given
Why walk when you can fly?
So, the prompt was “Still” but clearly, I fight the still and insist on the flight.
Hmm, what does (Unusually) Still, or this photo of a still hummingbird bring to your mind?
Join us in the hop and tell us where you fly, or hover, or nurture…
You are invited to the Inlinkz link party!
I didn’t know that about people of color with Downs not living as long 🙁 I’m glad you were able to move the photo from your wallet to your desk drawer, though, and YAY for you and Marcus speaking today. You’re amazing.
Sometimes I think it’s just you and I who worry about the race issue. – everyone else is “still.” As for the rest – I’m actually at a loss for words – but wait – a pop tart is not breakfast?
<3 <3 <3
And Celeste. We don’t have big enough drums to beat, but maybe we will eventually…