Is skydiving hard?
Is raising a child with Down syndrome hard?
Though the questions remain static; our answers come from different places.
Last night Wil and I drove to Elizabeth’s basketball game in Bedford (just north Toledo). A dark sky, flat un-scenic roads — minus the occasional Christmas lit homes — and nearly a full week of school put Wil to sleep quickly.
Wil remained upright in the passenger seat; his neck stretched to the right at 180°, head at rest on his shoulder. (He can also fold himself in half — thanks to low muscle tone — chest on thighs. It was the seatbelt, not his flexibility, that prevented this sleeping position.)
When Wil woke we were 20 minutes away from Bedford High School. He looked out the passenger window. Same dark skies and flat roads. “Too long, Mom.”
“I know, Wil. Almost there.” I knew the basketball game would be a challenge for him with the loud buzzers. He’d been to enough games to know that too. I gave him the choice to stay home with Matt. But he wanted to go. To cheer on Lila, his friend since grade school. She had aged up to play on the varsity team with Elizabeth.
When we arrived at Bedford High School, I was heartened as Wil entered the school with no hesitation. (There are times when he’s very excited to do something, but when the time comes he has second thoughts.)
The entry doors opened to a long hallway that led to the gym. About halfway down the hallway Wil stopped. “Headphones, Mom.”
I set my briefcase-sized purse (for such occasions) on the ground and took out his noise-cancelling headphones. Wil took off his hat and we made the exchange.
As we were ready to regain our progress, a custodian walked by us. He looked friendly so I jokingly said to Wil within the custodian’s earshot, “We better hurry or he’s going to put you to work.”
(Though I wasn’t conscious of it at the time, writing this now, I realized it’s become a habit in me to keep situations as light and upbeat as I can when there is an opportunity for Wil to become over-stimulated.)
“Oh, yes,” The custodian said and smiled. “And there is a lot of work. I just finished cleaning the ceramics classroom. That’s the most challenging. Scraping clay off the ground. Every day.”
The three of us chatted our way down the hall; our moods remained light as I hoped with this friendly interaction. Wil and I parted ways with the custodian and peeked into the gym. There was a stack of bleachers about four-high from the gym floor. There was also a second floor balcony with about 20 rows of seating. I suggested to Wil that we go to the balcony; the buzzer noise would be lessened.
But then Wil saw Steve, Lila’s dad. Wil adores Steve and ran into the gym to sit with him —only feet from being directly under the buzzer. I followed and thought, well, the more Wil is able to tolerate the buzzers the better (as most of us game-goers do — tolerate buzzers).
The game started, as did the buzzing and announcements over the loud speaker. When the second period was over, so was the honeymoon period of Wil’s chosen prime seat next to Steve and cheering on his friend and sister. Over-stimulation had taken over. I suggested we take a walk.
It was quiet down the long hallway. We took note of the artwork on the walls as we strolled; when we reached a line of the custodian’s trash pails blocking our path, we turned around and slowly made our way back, stopping at a bench for a seat. Wil sang an a cappella version of Luke Bryan’s “Whatcha Doin’ a Little Later On?” In the song, Luke imitates a high-pitched woman’s voice in her response to his titled question; of course, Wil does the same in his a cappella version. We always laugh when Wil hits that high range. In the car, or at home, I sometimes join Wil; the more obnoxiously high-pitched we can get the better! But I wasn’t as brave as Wil to do so in a school hallway, even being the only ones there. I laughed with him on his high notes, and his bravery, and marveled for the thousandth time of how he knows the purity of fun, and I have a standing first-class ticket to join him.
When it was nearly time for the second half to start, it was time to get back to the business of re-entering the game. We walked back toward the gym. About 15 feet from the entry Wil made an abrupt stop. I sandwiched my body behind his and wrapped my arms around his chest. I gently moved forward, which in-turn moved him forward, in baby-steps. He laughed at first, but after a few steps he stood firmly in place. When I tried to push more, he bent his knees which meant he’d take a full seat on the ground if I kept it up. I suggested we go to the second floor balcony and this time he agreed.
There was a large landing at the top of the stairwell with a window. To the right of the landing were propped open double doors that led to the bleachers overlooking the basketball court. Wil walked to the window and looked out. Then walked back to the top of the steps and took a seat near the wall with his feet on the first step.
“Do you want to stay there?” I asked.
“Yes, Mom.”
The stairwell was divided in the middle by sets of railings. Each railing would span about 3 steps, with an open step so you could cross to the other side, then the next 3 steps would be railed with an open step. I saw the logistical wisdom of this with Wil seated at the top. He was next to the wall so people could easily walk by him, but sometimes people would cross over to the other side giving him space.
Teenagers, individually or in small groups, were in almost constant flow up and down the stairs. I mused over a commonality I witnessed; each teen gave a slight pause of surprise at the sight of the blond teenager with noise-cancelling headphones at the top of the stairs, then resumed their conversation and pace up or down the stairs; sometimes crossing over to the other side, and sometimes walking by him. Just business as usual.
During one of the game’s time-outs, the song “Low” was played, which Wil loves, and he continued singing it on his own. The teenagers traversing the stairs gave no more pause than before.
I saw not a single prolonged stare — not a single one —that indicates the processing of something strange or unusual. Every pause, and I’ve become an expert at identifying pauses (and smiles for that matter…I can discern a friendly smile, or a smile of pity, in .001 seconds flat). These teens paused only long enough for their brains to say, hey! Something is happening that on a typical day isn’t. Oh, it’s just a guy sitting on the stairs. Onward.
From the second floor landing, I watched the game through the propped open double doors. I could see one of the nets and about ¾ of the court. To the far right of my view, standing at the railing and overlooking the court, stood a man and who I guessed was his teenaged son, their backs to me. They talked almost constantly, one turning their head to talk to the other, then back to the game, then turning their heads to one another, then back to the game.
I admired their ease with one another. How this father never in his life gave thought to his son sitting in the stairwell and refusing to walk into the game. How they enjoyed the flow of conversation between them, taking this moment for granted without even realizing they were doing so.
Then I looked at Wil, singing “Low” — he rocked to his own beat, his blond hair poked up over the ridge of his noise-cancelling headphones. He looked absolutely adorable and I was flooded to almost tears with my blessings. I, too, take many moments for granted without even realizing I do so. In a span of less than two hours, I experienced multitudes of small-big happenings that are easily overlooked or not even noticed at all; but raising a child with Down syndrome these moments are highlighted in bold bright colors.
****
I’ve never been skydiving so I looked up how skydivers describe it: “Skydiving is quite breathtaking and gives you a refreshing, incredible perspective on the world.”
The word hard never came up. It’s much too expansive of an experience.
WILingness 