I don’t think about Down syndrome everyday. With three kiddos under 6 and two teachers in the household, there’s lots of other things to think about. There is Homework and diapers, so.many.diapers. There’s doctor appointments and surgeries and what in the world we are going to have for dinner? We balance quite a bit as Most families do and we still try and somehow have a bit of a social life.
Every now and then there’s a knock on my proverbial door reminding me of limits. Actually though, most days when I’m reminded of Down syndrome, the knock on the door is much more like publishing clearing house calling.
Here’s a couple of texts I have received from Judah’s therapists and teachers:
He rocked it at that fashion show last night. I think he found his calling.
He was amazing today. We were reading a book we had never read before and he saw a picture of a book in it and signed book all on his own to show me. He saw cars and made some car sounds, and when I was reading and the characters hugged, he hugged me! (I may have re-read that page twice)
His understanding of language has grown so much!!
Judah kept coming up to me, reaching for my hands to dance with him.So cute!!! Also imitated all the movements to the songs. Already full day rooms are asking me if he was approved for a full day, so they can attempt to lay claim to him. I really have to retire becauseI would be very jealous of someone else having him in the fall.
So that’s our life. We’ll be trucking along parenting away when something like Judah’s insane popularity at a local fashion show or incredible email from a teacher, or a made milestone or even an insensitive comment in the world of special needs will remind us “oh yeah, we’re doing something big here.”
This happened in abundance recently . I was thrust back into awareness. I had a rare moment to absorb how amazing of a thing we were indeed a part of.
I organized an experience. We all permanently penmanshipped our bodies with a symbol to represent Down syndrome. It was an idea born from a couple of drinks with my dear friend, and to be perfectly honest, it was one of the few times my ideas made it to fruition. And as we all inked the symbol we had grown to adore in #theluckyfew tattoo, I more wore the burden of hoping nobody had regrets. Well, happily, regrets were unseen, rewards were many , and I checked a bucket list box in the name of advocacy.
That same week, I had to take a class. Many parents of children with special needs have taken it. It is your ticket in the door for Medicaid. It was mostly about older people with disabilities and the videos showcased many adults with Down syndrome. It was an obligation and so I obliged. I was not prepared for pits in my belly about the semantics. In my brain, I can look into Judah’s future a few years; the preparedness of kindergarten. I was not prepared to absorb how I need to plan for when I watch over him from heaven. That was hard. It was a gut punch and it was a sucker one. I didn’t see it coming. The good and the gracious we’re at a stop light as reality had the right of way. Thinking that particular way is difficult with your typical children, taking a class to make sure you get it right is painstaking. This was NOT publishers clearing house with balloons at my door. It was more like a summons.
In the same week I also said yes to this next move and am not sure how I did.
Months ago I spoke of the Gerber baby having Down syndrome and my incredible pride. You can read it Here. I also spoke of regret…..how my mom was so sure Judah should be entered in such a contest and how I just laughed it off; thinking it impossible. I revealed disappointment in my own disbelief and I surprisingly was welcomed with an opportunity to debunk it.
Judah was to be a model at the local Ronald McDonald fashion show.
The show started at 8pm…exactly one half hour after his bedtime. I was petrified about how he would handle it. He doesn’t do past his bedtime very well. Nor does he do crowds. Luckily he does center of attention and applause really really well.
He sparkled……like a freaking diamond!!!
With that weight climbing down from my piggy back ride, I rolled right into Gala weekend..
There was nothing left to be done. The donations were delivered. The t’s were crossed, the I’s were dotted, the babysitter was booked and the Uber ordered. And so I felt all done… until I realized, I wasn’t! I flew date night style into a release. I rode that Uber relaxed. And then I walked up those poetic stairs, seeing first, the canvas portrait of my very own DNA staring sweetly back at me. I swear Ed McMahon himself was knocking and shouting “you won!!” You won this life, do something big with it.” Again, I was bowled over. I rolled a strike. I remembered. This is something otherworldly.
Between the diapers and teaching and never ending teachable moment stuff with our own kids (aka, nice touches to your brother only, we don’t throw toys, stop digging in your diaper) Bobby and I rarely get to just clasp hands, squeeze and remind. This night I’m not sure we ever let go. Him and I; the creators of the magic, we stood as one, nodding in affirmation of all the beauty.
The clincher for us was the speech made by Heather Avis, author of the book “The Lucky Few”
I am very conscious of the way she spoke of her children with Down syndrome. Heather paved her path. 100 percent she chose the way she would travel. I do not wish to imply she had no struggle, because if you know infertility and adoption and Down syndrome well than you know she did. But I want to highlight here how our situations were 180 degrees; her choosing a baby with Down syndrome, me momentarily devastated by one. She was different from me but we were still the same. My God how that notion is so universal.
Heather said two profound things to us that night: ” miracles await you” and “we can do hard things ”
Those sentiments spoke volumes to me . Down syndrome is balloons at your door and it is also reality knocking . It is the lovely with a price tag . It is extra. Extra chromosomes and extra adoration. It is extra work and surprises. It is extra magic and magic undone. It is all of the moments trekking along in the trenches whispering “we can do this.” And those moments followed by some miracle like Judah pointing, knowing his colors, or maybe someday saying mama.
It reminder that it is a non complacent life. It is a life full of copious effort. It is a life full of meaning. It is a life I would choose a million times over.