Earlier this week, I shared an Instagram reel in which I said I find “Welcome to Holland” anything BUT comforting. I didn’t realize my opinion would resonate so strongly.
For those who do not know, “Welcome to Holland” is a 1987 essay by Emily Perl Kingsley. It compares the experience of parenting a disabled child to what it must be like planning a trip to Italy, but instead finding oneself in Holland. You can read the essay here.
For many people, the piece of writing quickly becomes a source of comfort, a reminder that even though things may not be what one expected, they are still beautiful in their own right.
I am so glad some people find strength and hope with this essay. When it comes to parenting disabled children, the more tools in one’s toolbox, the better.
Personally, though, I am not a fan of “Welcome to Holland.” I find it overlooks the very real trauma that many caregivers, including myself, experience.
As the parent of a medically complex child, I’ve seen my son experience more painful procedures in his first year than many people face in a lifetime. I’ve held my child through blood draws, IV placements, and X-rays. I’ve comforted him during hospital stays and ER visits. I’ve monitored for seizures, infections, and adverse reactions to medications. Simply put, I’ve had to see my child suffer a lot, and I wouldn’t wish that experience on my worst enemy.
It has taken years of therapy for me to scratch the surface of the effects that parent carer (or caregiver) trauma has had on my mental, physical, and emotional health. Many fellow parents I’ve spoken with have shared that, like me, they also have triggers that remind them of particularly scary hospital stays. We may not be able to watch or read stories about certain topics, or look at photos from especially difficult time periods. But none of us – and I mean NONE of us – are ungrateful for our children.
Yes, as parents of disabled children, we grieve the differences between our expectations and realities. But there is so much more taking place than that.
We aren’t pouting because we have to go on a European vacation slightly different from our expectations. We aren’t unhappy because we are surrounded by windmills and tulips instead of cathedrals and gondolas.
We are just trying to focus on the present moment, while also grappling with the memories of our children’s past challenges and the anxiety of their future needs. And that constant struggle – caused not by our children’s disabilities, but by ableist societal structures and policies – is far too significant to be dismissed.
Image credit: composite created with author’s own photo and Pears2295/Getty Images photo.
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