My son Aaron is 18 years old. He imbibes in a beer at the pub where it is legal and is scrupulous about saving money to buy the latest technology. He’s a Fortnite fiend and his social life during this pandemic has been purely through online gaming. He grumbles about doing chores but cheerily goes on daily walks with me (even though he says our walks are "not too interesting").
He continues to work on his acting skills with his acting coach, Improv Class, theatre group and speech language pathologist. If only the world would catch up and write more roles for disabled actors. He’s got a troupe of friends at the Down Syndrome Resource Foundation. I’m grateful he’s found a place where he belongs. Aaron’s strength is words and he is a punny guy. (Get it? Punny/Funny).
Aaron is interested in politics, and he follows the news closely. Yeah, his parents have influenced him, but what parents don’t influence their kids with their own interests? He’s looking forward to voting in his first election and will make up his own damn mind as to who to vote for.
I’m writing this for me 18 years ago when Aaron was first diagnosed with Down syndrome. I cycled through a list of fears when he was born. I desperately wanted a crystal ball to see into his future. I was worried he wouldn’t understand sarcasm. (False). Concerned we’d never have a conversation. (Not true). He had sleep apnea until he was six and I thought he’d never sleep again. (Now I have to drag him out of bed at 11 am).
I don’t have a crystal ball for you because every child is different. Some things are universal: our burden is solely with systems and society because of how they are hostile and inequitable to disabled people. And the truth is that everybody grows up.
Eighteen years ago, other people made proclamations about folks with Down syndrome. The medical community was exceedingly dour about all that would be ‘wrong’ with my son. This still happens today and pisses me off. This weakness-based lens is about how some clinicians value (or don’t value) people who have an intellectual disability. Someone else told me in the early days that people with Down syndrome weren’t consumers. (To that, I laugh and laugh. I think the advertising industry was built for Aaron).
Here's a message for me in the year 2003. I will paraphrase Natalie Merchant to say that with love, faith and patience, you will make your way. Although Aaron was my third child, I had to learn how to be a mother all over again. He taught me patience like no other person had before.
I recently heard a Martha Beck interview where she was talking about her son Adam. She wrote a book called Expecting Adam, which was one of the only stories about the lived experience of being the mother to a child with Down syndrome when Aaron was born. It was an important book to me.
She said when her son Adam was diagnosed, someone told her that she would be throwing her life away as an academic at Harvard. It ended up that she DID throw that life away and she got a new one instead. And that was a good thing. When Aaron was born, I was on a path to be a health care administrator, complete with the fancy job at the Ministry of Health. Now I’m a writer and health activist who rails against out-of-touch health administrators. (Irony alert).
You see, different is not bad. It is just different. It is hard to let go of the life you thought were going to have to accept the life you actually do have.
Now I’m in the process of letting go again. Aaron is an adult. He doesn’t need me as much as he once did. I’m mostly his on-call butler, just hanging around in case he needs to show me something on TikTok or to watch Top Chef or to open up his ramen package for him.
As I found out with my other two kids, seeing your babies grow up is a strange mixture of heartbreak and pride. My mothering philosophy is to attach with your wee ones early on and then childhood is a long slow heartbreak of letting them go. I think everybody needs their mother, no matter how old they are. The key is to love your children of any age unconditionally and without judgement. Love them just the way they are.
Now it is Aaron’s turn to grow up. He will do so in his own time. I must step out of his way, stand off to the side and beam as I see him transform more into himself.
I will continue to live vicariously through my loved ones. Life continues on, but in new ways. It is my job now to figure out how to reinvent myself again now that the heavy years of hands-on mothering are over. What will become of me? I'm currently writing my second book about health care called Ducks in a Row. I know nothing else for sure.
End notes: Because my husband and I cannot seem to stop caregiving, we adopted a yellow lab puppy in January. I am also thrilled that I will be a grandma later this year, as my daughter and her husband are expecting their first baby. Mom, mom of disabled kid, puppy mom and now grandma. Life goes on, in the most unexpected and thrilling ways.