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The question had been on my mind for awhile. Ever since I’d overheard the teachers talking about her, I’d wanted to know the truth. I don’t remember what spurred me to ask, but the moments that followed would change my life in ways I never fathomed.
“Mom?” I whispered. My mother, who had been brushing my hair out for Mass, paused.
“Yes?” She prompted, setting the hairbrush on the bathroom counter, “What is it?”
“Is Jessie going to die?” I blurted out, nervous anticipation of her response welling up in my throat. I will never forget the look on my mom’s face when she heard my question. “Yes, she’s going to die.” The second I processed her answer, I burst into tears. I didn’t understand. How could Jess, the beautiful, sweet eight year old I’d come to know and love… would one day be gone.
Jessie has a genetic, terminal syndrome called MPS III Type A. There is no cure. She is unable to walk, talk, or take care of herself. At the age of eleven, she has a life expectancy of 12-20. At first glance, you might think getting to know Jess wasn’t worth the time. But, it only takes a few seconds, to realize that a communication-barring disease has nothing on Jessie’s ability to express herself. It is easy to tell if she is happy, or upset - the only issue being it is hard to figure out why she is feeling the way she is - particularly when something is wrong.
As I came to terms with Jess’s imminent death, I grew increasingly closer with both her and her family. One of the best days of my life was spent in Boston, at the 2012 MPS Conference. I got to explore Boston with Jessie’s family, and some family friends - who have two children, Waverly and Oliver, who also have MPS III. At one point, during our very long day, we stopped at a parking lot. Once there, I raced Jess’s younger brother, Dylan, whilst pushing one of the kids. If I had to choose a favorite memory of mine, racing alongside Dylan while helping one of those kids fly, would definitely be one of them.
When I was in the fifth grade, Jess’s family held a 5K run, to raise money for MPS research. Although I did run the 5K, the best part of my day was the kids fun run. I had the honor of pushing Jessie around the field. At one point, I got stuck in the grass, and her chair tipped to the side! It had been awkward, to have dropped the guest of honor! Even though we finished last, by then covered in grass stains, I’d been happy. There are several pictures of the two of us on that day. However, my favorite is the snapshot taken when I thought no one was looking. It shows Jess and I right after the run, eyes locked, my hand on her hair. I put a copy of this photo in all of my school binders, to remind me of that moment.
I have learned many things from being one of Jessie’s friends. That tomorrow is not a given, is perhaps the most important. But, Jess has taught me more than any teacher could; in regards to belonging, empathy, respect, trust, and love. When you have a terminally ill friend, you really do appreciate every moment spent with them. However, Jessie’s life expectancy is not the only reason every time I get to hang out with her is engraved in my memory. To be friends with someone who loves life to its fullest extent is not something many people are lucky enough to have, which is why I remember the times I spend with Jess vividly.
Of course, not everyone is able to look past physical limitations and see a personality. In third grade, I had an interaction with some fifth grade boys, who were laughing at Jess. I had been raised around special needs kids, so thinking that they were “weird” or “stupid” because of their limitations, wasn’t something I could empathize with. Understandably, I got mad. I don’t remember what I said exactly, but I do remember that they left quickly, and didn’t bug me afterwards.
I have seen adults, who have reacted in similar ways. There was a time when a group of people stopped, and began to point and whisper - as if Jessie was a tourist attraction.
I believe that, to a certain extent, experience teaches respect. However, both kids and adults need to learn how to put aside their own discomfort and treat disabled people kinder.
I met Jessica because my mom became friends with her mom. They both had children with special needs, which probably made it easy to bond. Having siblings with special needs has given me the opportunity to be around, and grow comfortable with, people with disabilities. There are times when being a sibling is stressful, and it’s definitely not cool. But, when I take a step back and think, I am immensely grateful to have these experiences - as they have shaped who I am as a person. The lessons I have gathered from my life around those with special needs are the best parts of me.
I think that life has a way of making positives in a negative situation. There will be a day that Jess will die, and I dread it. But I wouldn’t trade the relationship I have with her, in exchange for a grief-free existence. As Glinda the Good- from the musical Wicked - so eloquently puts it, “Who can say if I’ve been changed for the better but, because I knew you I have been changed for good.”