Reflections on growing up with a disability
Parenting is tough. Each day is filled with a myriad of decisions, most made on the spot, that contribute to forming the foundation of what makes up a person. We’re not raising children. We’re shaping children as they are raised into adults. Parenting a child with special needs just adds extra layers to this already wobbly cake. I’m constantly second guessing when to push harder and when to lend a hand or when to intervene and when to watch how things play out. I was grateful to connect with an adult with disabilities who has all of the traits that I want for my son – confidence, independence, contentment, and courage. I’m happy that she was willing to share about what she gained from her own parents…
From Jessica
Everything I need to know about life I learned from Grey’s Anatomy…
“The human body is made up of systems that keep it alive. The one that keeps you breathing, the one that keeps you standing, the one that makes you hungry, and the one that makes you happy. They’re all connected, take a piece out and everything else falls apart. And it’s only when our support systems look like they might fail us that you realize how much we depended on them all along.” – Meredith Grey, Grey’s Anatomy
I am truly obsessed with the dinosaur of television shows, Grey’s Anatomy. My consumption of the 300+ episodes available on Netflix has been sudden and frantic, but fruitful nonetheless. Over the past 9 months I have watched the entire series one and ⅞ times, ignoring all other shows and focusing my attention solely on the happenings of Grey Sloan Memorial. I’ve convinced myself that if I watch the show often enough, I will absorb all medical knowledge and become the next best thing to a medical student. Unfortunately, my second round of watching the show has not yet offered this all-knowing insight, but it has taught me quite a bit about the power of relationships in the medical field.
If you watch the show, you are probably thinking that I’m referring to quick visits to the on-call room in between surgeries and passion-driven kisses in absurdly slow-moving elevators. While Meredith and McDreamy’s love story does get my heart racing, I am more fascinated by the patients’ stories presented in each episode. Those patients that have a strong support system advocating for their care tend to either have the best outcomes or the most tragic deaths. This is not an accident.
Real life…
Enduring surgery is extremely taxing on the body. Having someone with you as you go through something so excruciating is not just important for the recovery process from a physical standpoint, but also for morale, motivation, and will. At your darkest hour, these are the people that will help you fight through the pain and desire to give up. These are the people that will show you love, care, and grace. These are the people that will give you something to live for.
Now, imagine going through life and experiencing pain, of both the physical and emotional varieties, every single day due to a long term medical condition or disability. It’s not a crazy thing to think about seeing as, according to the US census, 1 in 5 individuals living in the United States has either a developmental, mental, or physical disability. The number of people affected by disability is constantly fluctuating as, sadly, there are hundreds of thousands of accidents that lead to paralysis every year, not to mention botched surgeries and other medical complications.
Whether you are born with some form of impairment like I was, or you develop a condition later on in life is not really important. Both circumstances require an exponential amount of care and love from family and friends. I can honestly say that without my support system growing up, I would not be where I am today.
About me…
I was born with CHILD Syndrome. It affects about 60 people total worldwide with skin and limb deficiencies on one side of the body. Personally, I came into the world with a shortened left arm and leg and the promise of never walking without the use of prosthetics. From the get go, my parents were in my corner, advocating for the best healthcare possible for their newborn baby. I had an amputation procedure to remove a small toe on my stump at only a few months old and began to be fitted for prosthetics at the age of two. At a time where I could not make decisions for myself, my parents did everything they could to ensure I was able to live a full life.
As I grew older and began to wear the prosthetic more frequently, I quickly discovered that my skin condition was not agreeing with the mobility device’s design. Years went on and small changes were added in, but overall, due to the shortness of my limb, there wasn’t much to be done. Up until the third grade, I stayed quiet about the true pain I was experiencing. Quite frankly, I didn’t fully understand that what I was feeling was abnormal. During my third grade year, my classroom was on the second floor of my elementary school building. Each and every day required me to climb up and down the stairs multiple times, creating more friction and discomfort than ever before. My parents started to notice extra blisters on the skin where the prosthetic attached and an exaggerated limp in my gait. In these realizations, they came to the conclusion that something needed to be changed going forward.
While my fourth and fifth grade classrooms were also meant to be on the second floor, my family managed to work with the school administrators and get them moved downstairs for my benefit. This taught me from a very young age the importance of being honest, especially when it comes to the pain you feel, and also showed me that it was okay to stand up for what I need in this world. Whether my parents realize this or not, their actions at this moment in my history continue to help me be a better advocate for myself today.
Because Jessica’s parents were bold advocates, she learned how to better advocate for herself.
A few years later, the blisters created during my third grade year had yet to heal properly due to the continued daily wearing of the prosthetic. I was distraught and after some strong consideration, followed in my parents’ footsteps and advocated for my own needs for the first time. Before heading into middle school, I approached my mom and dad and asked if I could take the prosthetic leg off for awhile and let my wounds heal. Not only did they allow me to undergo this experiment, but they also fully supported me when dealing with my new teachers and school administrators.
I think it is important that I mention why this was so monumental to me as an eleven-year-old girl. First, my parents heard my plea and did not dismiss it. Though they could not directly feel my physical pain, they empathized with me, but did not make me feel small in the process. Instead, they put me in the driver’s seat and trusted my judgment allowing me to fully control my path, thus giving me freedom and authority for the first time.
These feelings are important to me specifically for two reasons:
- I am a young female in a male dominated society
- I am a disabled individual in an able bodied society
Feeling validated and independent while young has helped drive my success as a young adult. By giving me a taste of autonomy, I have grown into someone who knows what they deserve and is willing to put forth the effort to stand up for my rights as a human being. At the time I am writing this post, I am engaged to a lovely British man, I am a recent college graduate from the University of Notre Dame and a full-time temporary employee for that same institution, and I will soon be getting married in my dream location and moving to London, England immediately after. These things do not make my like any more or less prosperous than someone else’s, but they do show that I have not allowed my permanent disability to stop me from living. I cannot take full credit for this feat. My family has guided my path and helped me every step of the way. As I have gotten older, I am thankful to have grown my support system beyond my parents alone. Caring for a child is already a challenge without a rare disease thrown into the mix. In the past and present moment, my mom and dad have handled my case with humility and compassion, always reminding me to be a kid/human first, prioritizing normalcy in a very unusual circumstance. They are my foundation, my grounding, my balance, and my centre. They are my everything.
Because Jessica’s parents listened, validated, and supported, she is independent and confident
At the end of the day, whether you are a surgery patient, a person with a disability, or a fully able-bodied individual, the two things we all want and need in this world are love and respect, which is why having a strong and feisty support system in your corner is so essential, no matter who you are or what you’ve lived through.
Read more from Jessica here!
