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, slow, daunting and barely manageable. 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.
We’re a highly specialized bunch, it’s adapt or die here, and adapt we do. We develop skills and equipment to manage our extreme environment, always looking for the next breakthrough. We’re capable and savvy, though a bit more fierce than most civilized populations.
In the welcome to Holland poem, the comparison is Italy to Holland, but if you were planning a trip to Italy, imagine how woefully unprepared you would be in the jungle. Even for us, planning another trip to Arizona, would be completely lacking in equipment and skills for the actual journey we’re on.
That’s where this analogy differs from the Holland analogy. This isn’t a trip that we’re fairly well prepared for, this is being dropped into a place where we don’t have the knowledge, skillset or equipment to survive, we have to ad lib the whole thing; our only skillset is improvisation and the will to survive.
The most implausible part of it all is that we actually succeed at it; by sheer determination, fueled by passion and love.