Real Life Stories from a Disabled Mom: Adapting expectations

Posted by Kieran O'Brien Kern in Life After Paralysis on November 21, 2019 # Mobility, Travel, Relationships, Lifestyle

Accessible pumpkin patchWhether it's the slew of holiday movies for almost every season, or the well-curated social media feeds, we're all striving for the perfect shareable seasonal moment. Outfits get coordinated and extensive itineraries feature panoramic vistas. These moments are immortalized on our feeds for about 30 seconds and foster FOMO in cubicles, couches, and kitchens everywhere.

This wheely fabulous mama started this soft-focus Fall fantasy with apple and pumpkin picking, coordinated outfits for the kids, and baking an apple pie. As an allergy-ridden ambulatory wheelchair user, I nixed the idea of a hayride but still scoured the interwebs a month in advance to find farms or 'farm experiences' whose websites even hinted at the word wheelchair. The triple digit web list dwindled to two based on distance. We both work in addition to the work of family and don't like to get to schleppy on the weekends. I called on a weekend, both had hayrides one hayride was non-negotiable except on weekdays when the hayrides didn't run. They patrons could walk up to the apple orchards and pumpkin patch. The representatives handling the phone assured me a power scooter could make it as one of the owners used a power chair user.

The second venue seemed even more promising, not only did they have an inclusive wheelchair accessible hayride, the person answering the phone was a powerchair user. I felt confident that this was our festive destination. But I forgot to ask one critical question. What is your parking like?

We chose a Monday that my oldest had off, not thinking that every other kid within 50 miles also had off. The closer we inched towards the farm, the more dubious our success felt. The traffic felt more like outlet shopping on Black Friday than a Fall outing. We squeezed our van into a spot and realized it would be hard to get me out of the van and impossible to get the scooter to me. We showed the attendant our parking placard, but the meaning seemed lost on her. We appealed to the police who were directing the external traffic who said we might have luck with parking in a far-off lot and taking the shuttle. As the shuttle didn't appear wheely friendly, we declined. The other destination was running their hayride that day, and my oldest declared that if Mommy couldn't go, she wouldn't go. We headed home determined to salvage the day and walked around our town taking in all the decorations and just enjoying a quiet time together.

Clearly it was time to change expectations. Did I want a picture? Or did I want fun with my kids and a memory? Cue Insta-guilt. After a month of work and travel we opted for fun and memories. We set out for the farm, neither apples nor hayride required. My kids did decide to match their outfits. Getting to the farm, the excitement was palpable. After walking and scooting up the hill, my toddler got her first look at the pumpkin display 'PUMPKINS!' She cheered and ran to embrace every pumpkin at her level. My older daughter acted cooler but just as excited to find the right one. We turn around and noticed the exotic chickens. 'CHICKENS!' we all cried. And we zipped across the yard. The best moments of my month were spent watching my girls interact with these beautiful birds. My toddler sat down for a good chat. 'Hi Chickens...' I'm not 100% sure what followed, but the conversation was in depth' Her big sister was excited with every new thing and made sure her sister saw everything. I'm a person who is always planning the next thing. But I stopped and soaked in the moment. They were only going to be six and almost two once. We found three pumpkins that were 'just right', loaded them onto the scooter and I went to purchase them in the shop along with some cider and doughnuts that fell into my scooter bag.

I'm great at hitting the reset button and I love fast forward. But this season has taught me the value of stopping to appreciate and not seeing what didn't go as planned. Because there is no rewind.

By guest writer Kieran O'Brien Kern

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.