How accessibility helps me make memories with my son
A low-key week brings joy and gratitude for this Sanfilippo mom
“Good morning, sweetheart. Ready to start the day with Momma? We’ve got a week of fun ahead of us!”
I kept my voice light and happy as I woke up my son, Will, but my feelings were mixed. Will’s school district has added several extra weeklong breaks throughout the school year, and last week was one of them. Most families in the district seem to love these additional holidays, but for our family, it isn’t quite that simple.
Will has Sanfilippo syndrome, which means that he requires constant care and supervision and thrives on routine. When school is out, my husband and I have to rearrange our schedules to meet his needs. This has taken on another level of complexity with my starting a new job this year.
Thankfully, my employer understood my situation when I was hired and was willing to allow me flexible hours, but having Will home still impacts my productivity. To be blunt, the breaks are hard, but we do what we can.
However, while I’m not necessarily a fan of these breaks, I was happy to have some extra time with my Will. Any additional time with him is a blessing, and I was still feeling guilty for being gone with Little Sister for her choir trip over the winter holiday. Maybe I could make it up to Will by having some quality time with him during this break.
With Little Sister’s school still in session while Will’s was on break, our options were limited on how to spend our week, as we still had to get her to and from school. We certainly couldn’t even come close to doing anything similar to the adventure Little Sister and I shared in Rome. What memories could Will and I make?
Finding joy in accessible spaces
We relied on our usual summer break outings, such as visiting the library, eating at his favorite restaurants, and going on lots of walks. We worked in several errands, including his very necessary haircut and his reward of a carousel ride after enduring said haircut at the local mall. Because it was mostly just me taking him out, I had to use his medical stroller a few times for his safety. It wasn’t Rome, but in some ways it was better.
Valerie Tharp Byers uses Will’s medical stroller to safely take him on adventures by herself and is grateful for the accessibility offered to chair users in the U.S. (Photo by Valerie Tharp Byers)
As we spent our time together, I realized I’d been harboring a lot of guilt for being unable to take Will on the Italy trip. It had been hard for me to split our family apart so close to the holidays.
But our week together confirmed a simple truth for me: Will would have been miserable in Rome. Besides the long flight (which definitely would have agitated him), the lack of accessibility in the Eternal City would have limited his freedom and ability to enjoy himself. Being able to push him in his medical stroller up the accessible ramp and through the automatic door, and using the elevator to reach an accessible bathroom stall in the mall were things I had taken for granted. These just weren’t options in most of the areas Little Sister and I visited in Europe.
Thinking about all the ways Will would have been limited on the trip, especially with Little Sister’s tight tour schedule, helped me release the guilt I’d been holding on to.
Even though my week with Will turned out to be simple and low-key, I was rewarded with so many smiles and special moments. It also helped me realize how fortunate we were to live in a country with so many accessibility laws and regulations. While there is always room for improvement, I am grateful that Will has so many opportunities to go out and live life in a way that suits him, granting us the ability to make more priceless memories together.
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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