Often, when I introduce my family (I have four children, two of whom have Down syndrome, two of whom are adopted, and the details get pretty long), my conversation partner declares my sainthood. Sometimes I’m an inspiration, or a warrior, and nobody ever knows how I do it all.
Let me tell you, I am not a saint (my children have a vocabulary of cuss words that they learned from me to prove it, too). I never set out to be an inspiration, and if I resemble a warrior at all, it’s probably due to my lack of sleep and messy hair, though my cuss word vocabulary doesn’t hurt that analogy either.
What I actually am is just a mom, like any other mom.
My kids come with a list of diagnoses that look like alphabet soup most days; POTS, ASD, HI, CVS, DS, PTSD, MCAD, ADHD, and more. We chose to adopt our niece, and then a second child with Down syndrome, but other than that, we were quite unaware that our parenting path would be so unusual. Each diagnosis came one at a time, and just like anyone who finds out that they or a family member has a medical concern, we had to wrap our minds around it all, and get used to the “new normal” that each one meant. And we’ve done that a whole lot more than most people.
I admit, we have gotten better at it with time, for the most part. But when my only healthy, typical child got a big diagnosis (POTS) it was just almost as hard to get used to as that first diagnosis of Down syndrome, so many years ago.
I try to take it in stride when someone calls me a saint, or an inspiration, or declares that they could never do what I do.
When life hands you medical, developmental and mental health issues, you deal with them whether you feel like you can or not.
There’s nothing inspiring about getting new hearing aids every year or two, or treating a Cyclical Vomiting Syndrome cycle, or picking my daughter up when she passes out from her POTS. There’s no sainthood when I swear under my breath when my son with Down syndrome, autism and ADHD is having a meltdown and we’re all exhausted by noon with many hours to go in a day. I didn’t feel like a warrior the day my daughter had to come home from school and I rocked her teenage body back and forth like a baby because she experienced a trauma trigger and had a flashback.
When I type it all out, I don’t know how I do it either. There isn’t any more of me to go around than there is any other parent. I spend a lot of my days frustrated and emotionally drained, running on coffee and adrenaline.
I secretly wonder if they’d be disappointed if they found out that I’m just getting by, pretty much like everyone else.
I think it would be easier though, if I didn’t keep getting lifted onto a pedestal. I never feel like I belong there, and it wasn’t like I planned my family to have so many needs in order to impress people. I secretly wonder if they’d be disappointed if they found out that I’m just getting by, pretty much like everyone else, just with a longer list of doctors, case workers and therapists. I possess no magic. I put one foot in front of the other every single day, no matter how daunting it is, and daunting happens a lot.
I wish, instead of the pedestal, instead of a compliment, they’d just say, “nice to meet you.” And if they’re really impressed, a cup of coffee would go a long way toward showing it.
