This month, guest blogger Justine Aubuchon is sharing her reminiscences of the June Jessee Memorial Foundation’s “Not-So-Haunted House” Halloween Party at The Magic House in October 2019. The JJMF is excited to host this event again on October 16, 2022 from 6-8pm for children with medically complex, neurological conditions and their families, as well as JJMF’s friends, donors and supporters. This is a free event,  but advance registration is required. Click here to learn more and register to attend. 

 

Before I had kids, I dreamed of celebrating the holidays. I associated having kids with long lines at the mall waiting to sit on Santa’s lap, Easter egg hunts in grandpa and grandma’s backyard, and trick-or-treating all night long on Halloween.

 

My dream of becoming a mom came true in 2017. During my son, William’s, first year of life, we learned he had Rett Syndrome, a rare genetic condition. Rett Syndrome for William meant being ventilator dependent, tube fed, non-mobile, battling seizures, and a slow loss of skills over time. Having a child with a disability changed my visions of holidays. Holidays brought on a lot of grief, anxiety, and isolation.

 

In the fall of 2019, William was 2.5 years old. I saw a Facebook post for the June Jesse Memorial Foundation’s “Not-So-Haunted House” Halloween Party at the Magic House. I read the details of the event and knew this was the perfect event for our family! I was so excited; I was probably the first one to sign up! After I registered, I quickly sent the link to my friends in our disability community. I had a feeling they were feeling anxious about what to do with their kids for Halloween too. In the weeks leading up to Halloween I had been thinking, “Should I even dress him up? What in the world should I dress him as in his wheelchair? How will I take him trick-or-treating with stairs leading up to every house in our neighborhood? Will people greet us at the door with judgment or pity since he can’t eat the candy?”

 

When I shared the JJMF event invite with some friends, everyone was overjoyed! We felt included and empowered. We started talking about costumes and crossing our fingers everyone stayed well enough to attend. The JJMF took care of all of the details to make sure this event was perfect for all types of families.  Our kids got to have the best Halloween experience. We weren’t greeted with judgment or pity, only “awwws” and compliments over their adorable costumes, just like we all dreamed of. We didn’t have to explain ourselves or our children’s condition. We got to be a typical family on a super fun holiday outing. 

 

The JJMF Halloween Party was all about community in more ways than one. William wore the most incredible UPS delivery costume complete with UPS truck cutouts to attach to his wheelchair. We were gifted the costume by a wonderful heart mom and were able to pass it on to another medical family the next year. William’s friends at the “Not-So-Haunted House” event were decked out as superheroes, sports players, and movie characters. We were able to take photos and explore the Magic House with low stimulation. One of the coolest parts of the evening was meeting some families in person who we’d only been friends with online. It was great to see so many familiar faces outside of the hospital and therapy setting. 

 

Going back to the pictures of the JJMF’s “Not-So-Haunted House” Halloween Party in 2019 brought me so many emotions. I never dreamed that was the last year we were going to dress William in a Halloween costume before he passed away in August 2020. I am eternally grateful for the core memories the June Jessee Memorial Foundation created for our family and the most perfect Halloween event of William’s life!