By Alethea Mshar
Note before reading: Alethea’s son Ben was born with Down syndrome. “We adopted him because we have an older child with Down syndrome, and thought it would complete our family to have another child with Down syndrome. Ben also has hearing impairment, Hirschsprung’s disease, Cyclical Vomiting Syndrome and Functional vomiting. He’s a survivor of Acute Lymphocytic Leukemia (ALL), and has recently been diagnosed with Parkinsonism, most likely a late effect of his leukemia treatment.”
There’s a popular poem about the experience of parenting a child with a disability called Welcome to Holland. It was an apt description of how I felt when we found out and processed the fact that Alex has Down syndrome. However, I find it lacking for the more significant disability Ben has, so here is my own analogy:
When you walk through the woods near your home, you’re exploring. It’s fun, interesting, and exciting. While doing such things I have come across snakes (the Eastern Hognose variety), raccoons, unknown dogs (one who attacked my dog and me) and occasionally people I don’t know. Doing that exposes me to more variety and slightly elevates my danger from that of staying at home. It’s a good, wholesome, fun, enjoyable, and completely normal thing to do.
That’s what having a typical child has been like for me.
When I visited Arizona I went for a run on a public property near the home of my in laws. There were cacti all over the place, and I made mental notes that snakes that I might encounter would be of a venomous type, and that even such things as ants, which in Michigan are fairly benign, could cause me real grief. It was a bit more nerve wracking, a bit more exciting, and overall a great experience. I recognized that I was outside of my comfort zone, but it was within a reasonable proximity of normal, and it was more of a mindset change than anything else.
That has been my experience parenting a child with Down syndrome. We took normal and kicked it up a notch.
The territory we unknowingly entered with Ben is more akin to an equatorial jungle. The vegetation is so dense that making headway is arduous and slow, but doable. The variety of the flora and fauna is stunning. And terrifying. It’s crucial to remain focused and attentive every second, even sleep is a luxury during which a certain vigilance must be maintained. Specialized equipment is necessary to survive. Dangers lurk on every branch, flying, crawling, swimming. A brief break from watchfulness could land you in a life or death situation. It’s incredible, it’s not for the faint of heart; only small populations live there, and tourists are few and far between.
This is life parenting a child with complex medical, developmental and mental health needs. It’s life on the edge.