Down Syndrome Brings The Miracles

On this last day of Down Syndrome Awareness month I am reminded of how grateful I am for the kindness of strangers, on which we rely so very much.

Today H and I needed to go to an area hospital to drop off some hand knits at the NICU, only to find out when we had made our way through the incredible hospital-maze that the baby who was going to get the handknits was not at this hospital at all, but at another NICU just down the street from where we were.

I should back up a little and give you context: The Dude loves hospitals. The Dude loves doctor offices, clinics, and any place where he might find his favorite people on earth: doctors and nurses.  Which I suppose, is a good problem to have. I mean if you’re gonna have a medically involved kid (H has had eleven major ear surgeries alone, not to mention a heart surgery and multiple exams under anesthesia), let’s hope they end up liking the people who have taken care of them. So there’s that.  But with The Mister, his affection for the medical community borders on obsession. So when we got to the hospital and began our great quest for the NICU he was already 100% convinced that we there to see one of his doctors. After all, we had started our day at our chiropractor, whom he really really likes, so why not continue the day with more of his peeps?

So when we arrived at the NICU window (thankfully the doors to the actual NICU were locked shut, otherwise H would have been in there like a flash) he was in a lather, just determined to see a doctor. The nice nurse looked and looked and looked for our friends’ last name but couldn’t find it anywhere, and she suggested that maybe they were at another NICU. I didn’t even know our city had two NICU’s so that was news to me….but yes, I agreed, a small dim lightbulb going off in my atrophied brain, that was most likely the case.  So back through the maze we had to trek, and boy was Mr Happy NOT happy at all.

When we reached the lobby (by now I’ve told myself I could definitely qualify as a contestant on “The Amazing Race”) I could see the front doors. We were almost “home free”. Almost. And then my biggest fear came true; just as we were approaching the front door H did one of his famous flops. His 107lb body became a bag of sodden cement and he would not budge.  Me, being built like John Riggins, hoisted him up to his feet and told him to stand NOW. Ya, that went over like a lead balloon and he curled his legs up to his chin and fell back down to the floor in a heap.

I was filled with dread and a few tears. I wasn’t embarrassed or worried about what people would think of us as they were stepping over us and around us (I got over that a long time ago). What choked me up was the realization that during our entire time marching around the hospital H just couldn’t understand, BECUASE of the Down Syndrome, that we weren’t there for one of his appointments, we were there for someone else. He just couldn’t understand, even though I had signed it to him and explained it multiple times. He couldn’t understand, and chances are these scenarios would always be befuddling and frustrating for him. That made me sad. And it probably always will. A mother’s heart breaks.

But in that very moment of despair, not just for that moment, but also some dread for all the future frustrations, another miracle presented itself to us, like it always does, just in the nick in the time. As I’m standing over my guy threatening to call security on him (and Homey don’t make threats, so I was very willing to do whatever needed to be done to get us out of that hospital in this century), the nice lady at the front desk asked what she could do to help us. And it wasn’t the judgy, condescending “What can I do for you, you poor pathetic excuse for a mother” kind of thing. No, she was genuinely trying to help and she would do whatever it took (probably just to get this drama out of her front lobby). I asked if we could use a wheelchair and she quickly and enthusiastically obliged and told us we could take it to wherever we had parked in the parking garage.

We made it to the garage and up to the car where I deposited him into his seat, locked him in and then took the chair back to the elevators.  I was spent. We were not going to make it to that other hospital, no doubt the correct NICU, today. I was running on zero food for the day and my brain was shutting down. I needed to find food and regroup mentally and emotionally. I was feeling defeated, but at the same time ever so grateful. Yet again, a stranger had shown us kindness and compassion. No judgements, no suggestions, no “fixes”. Just help.

Almost every time we leave the house and venture out into that great big world we are met with the spontaneous kindness of strangers; whether it’s the people in various dog functions who respond with favor and graciousness when The Dude breaks out in song, laughter or clapping (sometimes all three at the same time), or people standing in line with us at the grocery store who willingly comply when H reaches out for their hands and demands that they sing or clap with him (and singing always needs to have the appropriate hand gestures for the song). Being met right where you’re at with grace and gentleness is nothing short of miraculous, like little flickers of light on a dark part of the path through the woods.

(The blurry photo below was taken during my “Mom Time Out” after the hospital incident today when I needed to gather my wits and begin breathing again…….it’s not all about tiptoeing through the tulips on the wings of unicorns! But you can see that Mister was rebounding from his frustration just fine)54A30FF8-6791-4FE3-A7DB-670F4CD81AEE.jpegI don’t know that I would be so in tune with my own need for grace if it weren’t for the gift of Down Syndrome. Having a child with special needs is not always the easiest road, but I have no doubt that we have been on the receiving end of countless miracles because of it.

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1 Comment

  1. Dianne Holscher

    Always enjoy your ‘funny’ and absolutely ‘relevant’ posts, Gigi. Thanks for the giggles.

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