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Birthdays are supposed to be fun. So why did her nineteenth birthday have me feeling on edge? Normally the prospect of a celebration has me excited. For me, party planning, baking (ha! as if… BUYING) a cake, and wrapping gifts are generally joyful. But instead of joy, I felt something more like dread. Talk about a party pooper. I mean, just slap a “Debbie Downer” name tag on my shirt and call it a day.
It wasn’t until after her epic party (we really went all out on this one), when it was quiet and I was alone pouring over images of my daughter as a baby, a toddler, a school girl, right up until photos taken that morning of the amazing young woman she has become, that it all came out in a rush of emotions I didn’t expect.
There’s obviously a lot of nostalgia that go along with watching your child grow up… and away. Or in the case of many disabled kiddos, “away adjacent” or whatever that looks like. .
As babies, they clung to us. They needed us. And some of our kids really REALLY needed us. We may have complained about that a little and longed for the time when they would be more independent so we could get our lives back. We had no clue that when that day came, we’d wish more than anything that we could just go back. Or at the very least, just long enough to warn ourselves not to take those moments, even the hard ones, for granted.
You know that saying, “Little kids, little problems. Big kids, big problems.” I think that applies here. Not that my daughter is causing big problems. Not at all. But sometimes when I think about her future, one where I might not be here to protect her, I can’t breathe. So ya, that feels like a big problem.
When my son turned nineteen (a few years ago) I felt all the sentimental feelings. He’s wasn’t my baby anymore. He was suddenly a 6’5 man child, away at university, with a job and a girlfriend. He didn’t need us much anymore. He started building his independent life as he should. But despite all of that, I didn’t feel the same kind of dread. Missing him? Yes. Worried for him, not as much.
So where was this sickly sad feeling coming from on Avery’s birthday?
I think the root of it is the fear of the unknown. And the uncertainty about what comes next for her.
As she approaches the milestones of adulthood, things are going to change a lot.
There are big decisions to be made about Avery’s education that will set her on a course for future employment. There are so many likeskills left to teach her. And options for independent living (or whatever that might look like for her) to research and explore. What if we choose wrong? And what about the gaps? I think about the gaps a lot. Why didn’t we work harder on speech therapy? How did we not see certain issues creeping up (a topic for another time maybe) and intervene earlier so that we wouldn’t be playing catch up now? And can we even catch up at this point?
Her typical peers are no longer young kids who have been (mostly) oblivious to her cognitive and speech delays. They accepted her without question. It felt so much easier then. They’re pleasant when they see her now, but they don’t have the time or interest anymore. They have big busy lives. And her younger friends are now more aware of her differences. Some of her neighbourhood playmates have distanced themselves. One neighbour friend used to hang out at our house all the time. She’d come over to play games and do crafts and jump on our trampoline and eat popsicles on the swinging chair in our backyard. Now, she looks past Avery, like she doesn’t exist. We ran into her and a friend at the drugstore a few weeks ago. When Avery tried to say hello, this “friend” pretended not to see her. The hardest part was seeing her whisper something to her friend, while they both snuck glances and laughed. It sucked. Though I shouldn’t say “sucked.” Avery says that’s a bad word. But trust me, I had way worse words that I had to force myself not to use. Out loud anyway.
In the past, Avery wouldn’t have noticed. But she notices now. She is aware when a child says, “Sorry, I can’t play with you today,” And then sneaks off to play with another friend around the corner. When she asks me why, I don’t usually have answer so I simply offer her a distraction. Those social slights hurt her. And her pain becomes my pain.
Now that she’s older, it’s harder to protect her from the world. There are dangers and hurt lurking everywhere and my mama shield may no longer be enough.
That scares the hell out of me.
When I showed Avery a birthday compilation video I made she watched it in silence. At the end, she turned to me with tears in her eyes. I was shocked. I asked why she was crying and she sobbed, “I don’t know. I just feel sad. Maybe it’s a happy sad?”
She was feeling it too. Not the fear, but the nostalgia. Heartbreaking, but also quite wonderful. For a child who has always lived solely in the moment, she was feeling the past and seeing, possibly for the first time, how far she’s come.
She doesn’t look ahead very far. The future and the concept of time in general is still quite abstract. I hope she continues to live in the moment, with only fleeting and encouraging glances back. It’s such a peaceful and mindful way to live. This is a lesson she’s teaching. And one I’m always trying to learn.
We love you fiercely young lady and we’re so proud of the independent woman you are becoming. So close your eyes and make a wish, Avery Bravery.
