Our baby is starting to look so much like a boy. He has so much personality, he is so funny, and lovey, and he is just absolutely enthralled with his brother. He is getting pretty good at rolling around to get where he wants, and he’s even army crawled a foot or two once or twice, though he doesn’t do it often because it takes a lot of effort and really wears him out.
He loves blowing raspberries, he has mastered one sign (more), eats everything in sight but likes beans the best. He can sit with help, and enjoys it but can’t get up and down by himself yet.
We live happily in our family bubble, we don’t notice Down syndrome; we focus on ability not disability. It’s easy to do in the bubble.
Last weekend I went outside my bubble. I went to Tempe and met my friends and their darling babies too, many of them who are Cop’s age and they are standing, walking, starting to talk. On day one I felt this little pang, this pinch of what life “should” be like.
Should. What a stupid word.
On day two the pang was gone. An ache for my boy replaced it. I missed him. I missed carrying him around because he can’t get around himself, I missed holding him up so he could see, I missed the weight of him on my back, and the pressure of his head on my shoulder when he rests. I’m embarrassed that I still get the pang, sometimes, the bit of jealousy about what life “should” be like, because if our life was different, if Copley weren’t I’d be devastated. He is perfectly him, and perfectly ours.
On day three something funny happened. I went to a conference session the topic of which was Babywearing and SPD/ASD- it was the first special needs session of the weekend. I listened, and I learned, and I also felt. I felt the undercurrent of shared struggle that parents of special needs children bear, even if we don’t think of it as a burden. It’s not fear of disability, it’s not fear of hard work or annoyance at the complicated ballet of scheduling our family has to pull off to accommodate two kids and four therapists, life isn’t hard, we aren’t angry or sad.
But we’re tired. Exhausted. Fearful about the future that holds so many unknowns. Alone and isolated and afraid to drop one of the many balls we have in the air. Worried about friendships and community and love- not for us, but for our children as they grow and integrate into our communities. Normally I push my fears to the back of my brain and smother them because there are too many things that require my attention right now, and to linger on fear prevents me from living presently. But as I sat and listened, my eyes grew wet, and tears started to fall. And I wasn’t sad, they weren’t tears of grief, I’ve spent those tears, they were just so many overwhelmed feelings bubbling out.
To hear women who’ve come before me say yes, it’s exhausting, yes, it will become even more exhausting in the future, and yes, you can cope, you can manage, you can thrive. This is my village, this is why I’m here.
Waiting for my flight home I sat at a lunch counter at the airport and picked at some french fries. I chatted with some men returning from a bachelor party, and the bartender who was egging them on, angling for a big tip. It was fun, a fun way to kill time when all I wanted was for time to fly so I could get home to my babies.
One of the men on the trip said he was an agent for YouTube stars which turned the conversation towards funny viral videos. I handed the bartender my credit card and was about to sign the tip when he made a comment about how “fucking retarded” people are. My hand froze, and I looked at this man, a man who works for tips.
It used to be hard to speak up, to chastise people and ask them to be better, especially when the mood was jovial and the crowd was laughing, but it isn’t hard now.
I looked him in the eye and said “the funny thing about a job like this, is you never know who is sitting at your counter, about to give you a big tip. My son has Down syndrome, he’s just a baby, and when you say things like “fucking retarded” you are being hurtful and extremely offensive, not just in the abstract, but specifically about my beautiful one year old. There are so many other words you can choose, please choose better, be better, and not only because you never know who you are talking to, but because you never know who might overhear you, and because it’s just time to let that word go.”
I didn’t feel that punch in the gut feeling, I wasn’t sad, I wasn’t really even angry. I think I got through to him, at the very least I don’t think he’ll ever say that word at work again. I tipped him 20% and got on my plane. When my family picked me up at the airport my beautiful boy wouldn’t let go of me. And I couldn’t let go of him.