You Are Worthy of Every Good Thing, and MORE!
Illustration by Brianna Gilmartin, Verywell
My parents agreed they wanted four kids, just not all at the same time. We were born at almost thirty weeks, I the smallest at two pounds, twelve ounces. And for the first week I was doing great, the best out of the four of us, then I came down with necrotizing enterocolitis. A condition that, if left untreated, I would die from. But operating on a week old premie was a risk in itself. The first operation was to remove the majority of my colon and the second was to sew me back together. After the second operation I turned blue and almost died again. Luck was apparently on my side, as I am alive and my dad still likes to joke that I have a semi-colon.
Raising four kids at once was not an easy feat. On the one hand, having multiple siblings was great because I had built in playmates. On the other, we had more than our fair share of fights and a crisis of identity following wherever we went. For most people, we were the quads. Not individuals. We didn’t truly have the opportunity to differentiate ourselves from one another until high school.
My disability, spastic diplegia cerebral palsy, is another challenge. That basically means my brain sends the wrong message to my legs and tells the muscles to tighten. This restricts my range of motion, limiting the physical activities I can safely participate in and affects my brains processing speed. Think of it like having a finicky WiFi connection. The page will still load and take you where you need to go, it may just take a little longer to get there. Growing up it was like having a “different” stamp on my forehead. My peers didn’t tease me (to my knowledge), but they didn’t go out of their way to engage with me either. This lead to a little girl who may have seemed happy on the outside, but on the inside felt a vast numbness of emotional isolation and the sharp sting of unbelonging.
At school I was often taken out of class for subjects like math and put in a special education class. I don’t know the exact reason why this happened. My mother was told it was due to some kind of processing issues related to my cerebral palsy. After my fourth-grade teacher saw me excelling at my multiplication tables, she had to fight with my school in order to integrate me back into the classroom for math lessons. At home, because my father didn’t like being social, we did not have friends over often. That meant that even though I was lucky enough to do extra curriculars, like horseback riding, and later switching to karate, my social skills were, in my view, underdeveloped. The combination of all of these circumstances made it infinitely harder for me to learn how build and maintain friendships with my peers.
My disability was likely another reason for the fights growing up as I was put in a bubble by my parents and teachers. I was not taught the value of independence or actively encouraged to take such a chance to exercise my independent muscles (pun intended). After I transitioned to four-arm crutches for a mobility device at age eleven, my teachers and parents assumed I couldn’t carry my own backpack without my walker to offset the weight. It wasn’t until working with Mass Rehab (The Massachusetts Rehabilitation Commission) during my freshman year of undergrad that I discovered all I needed was an extra sternum and waist strap to secure my backpack to my body. I remember sitting in dormitory lounge with my case manager, dumbstruck. I hadn’t known they made backpacks like that. I didn’t learn how bring my laundry up and down stairs until I was fourteen, and I didn’t learn how to tie my shoes until I was 16. It was my stepmother who encouraged me to do those things, as my father had long since given up on teaching me. He never had much patience. As a result, growing up, my siblings were tasked with doing many things for me. And as I grew older, I felt a sense of sweeping sense of guilt.
My relationship with my father also changed as I grew older, and grew even worse as my step-mom came into the picture. My teenager-hood, especially, was rank dysfunction at that time in my life. Like many teens, this was a time where I needed the most emotional support. The lack of it was the catalyst for my struggle with suicidal ideations. People like my physics teacher, English teacher, guidance counselor, therapist and godfather were invaluable to me. They gave me the validation I desperately needed. They affirmed my resiliency, my intelligence, my capability, my worth. My godfather especially. He still tells me, to this day, you are worthy and deserve every good thing that comes your way. Equally as important, they all gave me their time. My physics teacher listened to my struggles at home, and taught me that it was okay to reach out for help when I needed it. Over time I started expanding friendships, staying after school late to work on my homework, and reading. Reading to this day is still one of my favorite coping strategies.
College came with its own set of struggles, but it was there that I found a new sense of hope. I hoped for independence, connection, and a sense of purpose as many young people do. This hope drove my courage as I learned how to advocate for myself. I built relationships with my school’s disability services office, with my professors, and with my fellow students. I learned how to navigate multiple systems of transportation to go to restaurants, grocery stores, and medical appointments.
Now, I’m in a MSW program. It is my dream to be an advocate in the disability field and drive policy that is inclusive, empowering, and shaped by the voices of the vulnerable and unheard. This GIFT program (Gathering Inspiring Future Talent), which I found through the Northeast Independent Living Program helped me explore my gift of compassion that I bring to the world and provided me with foundational communication and listening strategies on my way to realizing this dream.
Furthermore, if you take nothing else from my story, let me leave you with this. You are worthy and deserving of every good thing that comes your way. It will always be as true for you as it is for me. It may take some time for it to sink in. In the
meantime, surround yourself with the people who already believe it and it will come.