A long time ago, the teachers in my English department gathered on Fridays during lunch to socialize and eat. When it was "your week" you brought some delicacy to share with everyone. Usually, three people were signed up for the same Friday so there would be a variety of goodies from which to choose.
One year, my Friday fell on Halloween. I was thrilled about the marvelous timing because I am a holiday geek. My mind swirled with ideas for Halloween-themed treats, and I pulled out my collection of Family Circle magazines to search through seasonal issues for some fantastic, spooky, delectable party dish. Mind you, the only children I had at the time were my students. I was saving holiday issues of Family Circle for when I had a family.
When I showed up to the break room on that Halloween Friday with sheet cake, my colleagues smiled. The crumbled Oreos on top were made to resemble dirt which was scattered around Milano cookie "gravestones." Marshmallow ghosts were situated next to marzipan pumpkins. Gummy worms were stuffed in the cake with their "heads" sticking out. I laid out skeleton-themed napkins and serving utensils that resembled bony hands.
"You need to become a mom. Like soon." commented one of my friends. Some day, I said.
Fast forward to some day.
Some day brought me to some scary situations that had nothing to do with Halloween. There were doctor appointments in sterile medical buildings. There were evaluations in tight rooms that smelled of other people's cologne. There were home visits by behavioral agencies and IEP meetings with school personnel. Instead of buying ingredients for amazing birthday cakes, we were purchasing books on special needs parenting.
Before half the population knew what gluten intolerance was, we were buying gluten-free food from online sources. I did not have the time for cool Family Circle recipes, and truthfully, I would not have been in the mood for that even if time permitted.
It might or might not have appeared in Family Circle, but there's an essay about special needs parenting called Welcome to Holland written by Emily Perl Kingsley. In it, Kingsley describes the planning of a trip to Italy. It was highly anticipated, yet to the couple's surprise (and dismay), when the day came, their plane landed in Holland. Not what they expected.
Some parents with children who have disabilities can relate to Kingsley's essay. I did once. I felt that sense of discombobulation; I expected something to be one way, and it was, in reality, quite another. And, like many facing that type of situation, I dropped the dreams and plans I had for how our family would be. It wasn't necessarily an intentional or sudden dismissal, but a casting-off, nevertheless. For one thing, I didn't make any fantastic holiday cakes.
As the years came and went, two things happened. I questioned that Holland piece, for one. Why give up Italy? Seriously, why? Yeah, so you're sitting under a windmill instead of in a gondola. A.) I'm still me; my child is still my child. What does it matter where we are? B.) Why couldn't we find and enjoy a gondola?
The second thing...harder to explain, but call it learning to not give a damn. I might spend time in one country, but I'm going to visit the others I originally wanted to see. No reason we couldn't go to Italy.
It was once intimidating to think about how we'd navigate eating out, going to a theatre, throwing birthday parties, or flying across the continent on a vacation...in the context of special needs. Negative thoughts do come...what if this, what if that. And, what will others say.
That's the not giving a hoot part. With thought and care, we could go anywhere, anytime. Amsterdam; Venice; Casper, Wyoming, Salem, Massachusetts; Tombstone, Arizona, and more. There is much life to be lived, and many cakes to bake (gluten-free flour has gotten ever so much better).
It's important to go after the dreams, make the plans, and bake the celebratory cakes. I could still go completely gangbusters for the holidays.
There may be, for special needs parents, a casting off of the dreams and plans that once filled the mind. It's likely unintentional: unexpected circumstances can alter life's path. Or, it might actually be intentional. We convince ourselves of the things we can no longer do given our circumstances.
Adjustments need to be made, for sure. So, make them. Looking back, I guess it's a natural thing to give up on some stuff because of what you may be going through at the time. But you don't have to stay there forever. Appreciate Holland, then go enjoy the original plans you made as well, and the ones yet to come. It'll do your heart good.
About the Author:
Keri Horon is a writer, educator, and special needs parent. She joined Vest in 2019 as a Vest Success Manager.
She is also a Vest subscriber where she uses Vest to plan for the ongoing and future care of her precious son.