I think I had only been a special needs parent for maybe one week before I was bombarded with disability poems – the most popular being “Welcome to Holland,” by Emily Perl Kingsley.
While trying to get my footing, and recover from the freight-train that just hit me with full force, being wounded physically and emotionally from a traumatic birth and fighting for my child’s life and my email inbox was being flooded with disability poems.
While I’m sure people had the best of intentions, unknowingly they were increasing my pain.
I was just trying to get us all home, fight off the anticipated death of our child, and there it was the word “disability” all wrapped up in a neat poem like things really weren’t all that bad.
They were really bad.
And they were going to be bad for a really long time.
I found myself realizing these poems weren’t sent to me or designed to make me feel better – they were designed to make the sender feel better.
They lacked knowing what to do so they all thought that by sending me an inspirational poem that somehow I’d find comfort in it, or that I’d think that having a severely disabled child, just wouldn’t be that bad after all.
Heartbreak, grief and heavy loss loomed over each word.
There was nothing at all even remotely close to the comparison of a vacation to anywhere on this earth.
I was in a place that felt like it should never exist – not for me, not for anyone.
No sweet rhyming words, no analogies, no inspirational phrases made me feel one ounce of comfort.
Disability poems made me feel like everyone wanted to paint these grim circumstances all a bed of roses.
I needed someone to bring me a hot meal while I draped myself over a NICU bed begging for my son’s life to be spared, I needed someone to bring me a fresh change of clothes, I needed someone to hold my hand when they delivered the news “global brain damage.”
I needed someone to take a real interest and be present for the hardest and most defining moment of my life.
What I did not need was a disability poem.
To this day I still cringe when I see these poems passed around.
Some parents are able to embrace them and seem to relate on some level assuming that it gives others who are not on the special needs journey some perspective of the path we are walking, but there are still far too many that feel that disability poems added to a painful time in their lives.
We will in time look for words of comfort, places of encouragement and we may or may not be ready for a disability poem at that time – or any time throughout our lives.
But the choice should be ours and on a time when we think we are emotionally ready for them.
If I one wish for all those parents walking in my footsteps, I’d hope that they’d be offered real support and comfort that wasn’t just sent to them in the form a disability poem.
I wish we could all find a way of offering each other personal support, and ditching emails and social media correspondence at times like these.
Hold their hand.
Tell them you have no words for what is happening but let them know that you’re there and will always be there as they fight through the unknown.
Most importantly, please skip the disability poems.
Have you had to leave a venue early due to lack of suitable changing facilities?