I don’t know how to write about this.
I’ve been thinking about it. I cried about it. It sat heavy in my heart.
I went to pick up our click & collect groceries last month. It was a beautiful day, the sun was shining.
It was the kind of weather that begged for families to go outside. As I drove home, I saw so many families out together. Families on bikes, some out walking with or without their puppy, and some skipping down the sidewalk.
It was so nice.
It was awful.
I watched these parents give their kids the freedom to move and take space. I watched kids who were given that freedom choose to stick close to their mom or dad. You could see the joy these activities were bringing families. After a cold and wet week, with snow showers one day, and wind gusts others, the sunshine was truly welcome by everyone.
As I watched these families, I felt a tinge of jealousy creep into my heart.
I felt joy as I watched them, but that was punctuated by the realization that our day wasn’t going to include that sense of freedom.
What those families were doing probably doesn’t seem like a big deal to many. After all, isn’t going out for a walk or a bike ride a ‘typical’ family activity?
And there you have it. It’s a typical activity.
And we aren’t a typical family.
As I drove home, tears came to my eyes. I tried to blink them back, but I couldn’t keep them from spilling over.
Some days, we are so similar to any other family. Other days, we are incredibly different.
That day, the differences felt so obvious. It felt unfair. It made my heart heavy.
When we go out for a walk, it’s not a relaxing activity. We have to carefully plan our route …
– we can’t go past a playground (Robert doesn’t understand it’s closed)
– we can’t go down a street that is too busy (we are still teaching road safety)
– we can’t go down a path that’s too narrow (social distancing is a challenge for kids)
And once this is route is decided, we can’t just take a leisurely walk. We have to manage the boys’ safety.
When we let Sullivan out of the stroller, he’ll run along happily. His little legs pumping and his joyful giggle fills the air. If we say ‘freeze!’, Sullivan will come to a stop, arms out, and wait for us.
Robert gleefully says “Bonjour oiseau!” as we pass a bird. He says “Merci monsieur!” to the man who steps off the sidewalk to give us room to pass each other with the appropriate social space.
Both of the big kids love going for walks. Robert especially. He can’t help but run ahead when we are on family walks. And, at 6 years old, he’s already nearing my height (I am less than 1 foot taller than him!), which means his legs can take him to 4 houses down in the blink of an eye. His laugh as he runs ahead is infectious.
When we say ‘freeze!’, Robert doesn’t stop. He keeps running, his legs wide apart to keep him stable (the typical gait of a child with Down Syndrome). He is laughing as the wind blows in his hair, and the distance between us widens. It’s scary to think he won’t stop when we need him to – that he could run out of sight, or that he could keep running into the street instead of waiting for us at the corner.
So when I saw all of those families out together – sticking together as a unit – I couldn’t help but feel a heaviness in my heart.
It’s been a month since I drove by those families, and during this time we’ve worked so hard on practicing walking together as a family. We play ‘stop-and go’ type games, as recommended to us by his Occupational Therapist. We do silly walks to keep him engaged and closer to us (bunny hops, skipping, marching…).
Despite all of our best efforts, Robert still runs. We still have to worry about his safety. But one step at a time, one family walk at a time, we improve.
That day in April wasn’t easy. I keep reminding myself to take everything one day at a time. We will never be a typical family, we will always be ‘the same but different’ and that’s OK.