“Have you tried to wash the dirt off your forehead?” asked my mom from the other room. “Mom, seriously, you’re being ridiculous, I’ve been trying!” came my annoyed reply. An hour of furious scrubbing culminated in our joint decision that I must have a birthmark, or possibly some sort of bizarre sun tan that created the darkened line right down the center of my forehead. I called my mom crazy: that she was being paranoid for dragging me to the dermatologist for what was perceivably a birthmark. The first doctor assured us it was nothing more than a skin condition and that I should come back in a year or two. When the car door slammed to head home, I ignorantly told my mom, “I told you so” with a relieved smile on my face.

My mom, being a former nurse, did not accept such a hasty answer. Within a week, she had scoured the internet and discovered Dr. Kathryn Torok at University of Pittsburgh Children’s Hospital. Dr. Torok is a rheumatologist specializing in treating scleroderma with patients all over the world. A day after sending her photos of my skin, we were set to drive two hundred miles from Columbus, Ohio to Pittsburgh, Pennsylvania the next week. My diagnosis was swift, though our journey to come was not.

During that first appointment, I was diagnosed with localized linear scleroderma. A dozen doctors told me how thankful I should be that my mom caught it so early: that my life would be significantly easier than many of those with the same diagnosis at later stages. I would be lucky to only have two years of methotrexate injections and two years of methotrexate pills. Ten years old and still afraid of flu shots, the dark, and spiders, I did not feel so lucky.

This sudden challenge in my life terrified me, yet my mom made sterile hospitals feel like home. Through every appointment, needle, meltdown, and three-hour-long drive to Pittsburgh, my mom was there for me, offering her hand to hold on to. She never left my side when I was sobbing in busy rooms full of doctors or in the quiet of our living room when she gave me my Saturday night injections. She rubbed my back with my favorite lotion when the medicine made me nauseous, and made me breakfast in bed on Sundays to cheer me up. When steroids made my cheeks swell and methotrexate thinned my hair, she reminded me I was still the beautiful girl I always had been. Soon, the long drive that I used to dread every three months became a quarterly event to look forward to. We would pack up the van with the best snacks, make a playlist with only the best of the best, and she would spill all the old family gossip I had waited “until I was older” to hear. We ordered room service when we got to the hotel and stopped at our favorite restaurant, a Caribbean-themed restaurant called Bahama Breeze, when we left. To complete our “vacation”, we had to stop at Sarris Candies, a local chocolate shop in Canonsburg, Pennsylvania. The shop was a perfectly random discovery on the day of my first-ever blood draw, and became a delicacy that my mother and I eagerly awaited upon leaving the hospital.

Today, I am fortunate to study in Boston, pursuing a degree in International Affairs and International Business while minoring in Spanish. I have been in remission for six years and I was able to travel the world while studying abroad last semester. From Amsterdam to Paris to Barcelona, I soaked in all the joys of travel, and persevered through all the familiar growing pains of freshman year. I was able to practice my Spanish skills, which I hope to someday use in my profession. I cherish spending time with friends, exercising at the gym, and going to cafes to study. Admittedly, I take the subway even in perfectly good weather because somehow, no matter how much sleep college students have, we are sluggish and tired in perpetuity. I often remind myself of the sacrifices my family has made to get me here, and I always muster the energy to make it to class. I have found that the best part of Boston is that it has all that is to be desired from cities like New York, London, and Chicago, yet is far easier to navigate as I manage all the difficulties of leaving my home in Ohio.

When I was first diagnosed, I thought the doctors were cold-hearted for telling me to be grateful. Now, I wish I could go back and thank them for giving me more years than many with scleroderma. My younger self, petrified by her diagnosis, could have used a glimpse of all the growth, experience, and joy that would someday come. I have been given so much more time and freedom that I could have lost, and hope to make the most of my academic and professional career. Beyond that, I am so incredibly grateful to both of my parents for driving thousands of miles to reach the best doctors and be able to live the life I have been granted to the fullest.

Even better than Caribbean-themed restaurants, magical chocolate shops, and road trip snacks, scleroderma has given me a bond with my mother that we never could have developed without going through what we did together. Though my childhood would have been much simpler without scleroderma, I would not trade away the pain I dealt with at such a young age for the strength I have today. Further, my life could have been much harder if my mom had not trusted her expertise as a nurse. I am often skeptical of those who claim to have “intuition”, but she undoubtedly does. She can always see what is coming before others, as infuriating as it might be when she now tells me “I told you so”. Now that I am on my own, I have learned to trust my own intuition and simultaneously adopt her sanguine attitude of finding small joys in the face of great difficulty.

–Grace