“How Scleroderma Has Changed My Life”

Carpe diem, Baby! Make the most out of today and don’t worry too much about tomorrow!

This is the motto that my mom preaches to both my dad and me.

After my mom was diagnosed with scleroderma, she and my dad attended a medical conference about scleroderma and they learned that having a baby would be safe for the baby, so they got right to work! I was born about a year later. They tell me I was healthy and happy and very cute.

After I was born, my mom’s breathing declined and she had lot of chemotherapy. She couldn’t have more children after that, so I grew up with the advantages and disadvantages of being an only child.

As I was growing up, it didn’t seem to me that my childhood was being negatively impacted by my mom’s scleroderma. My parents kept me very active. I think they enrolled me in enough sports and activities for several children. I played hockey for a year. When I said I wanted to quit hockey, my mom was extremely excited about not needing to sit in a freezing cold ice arena anymore.

They sent me to every summer camp under the sun…. sailing camp, boy scout camp, tech camp, theatre camp, church camp, waterski camp. They were keeping me busy because they both worked full-time during the summers. I know now that my mom was exhausted from her full-time job but she needed it for good health insurance coverage. Although I was gone from home a lot in the summer, it taught me to feel comfortable meeting others and to try new things.

I was fortunate that we did a lot of traveling during my childhood because my mom wanted us to travel while she was still healthy. Skiing was my mom’s most absolute favorite thing to do in the whole wide world so we went on as many family ski trips as possible before the time came that she couldn’t breathe well enough to be at high altitude anymore.

Skiing is the family activity that she misses most of all but we have lots of memories and photos of those ski trips. Mom is still very competitive whenever she skis on the Wii.

About five years ago, my mom had a stem cell transplant in Chicago to slow the progression of her scleroderma. She was gone for most of the summer. Before she left, she made a detailed calendar of my summer schedule so I could stay with different people and have a lot of fun. I was blind to what she was going through until I flew with my dad to visit her one weekend in Chicago. Even then, she had my visit all planned out for me so I would have a great experience. I got to see the play Hamilton, one of the best plays ever. My mom was going to attend the play with me but she was too sick. That might be the first time I realized that her health condition had a serious impact on her lifestyle.

Later that summer, there was a special family reunion in Utah. My mom really wanted to go, but she didn’t have the strength. Instead, she and my dad figured out a way for me to fly to Utah to “represent” us. I was treated like a prince by all of my extended family members whom I was just meeting for the first time. It was really fun and it gave me a lot of confidence to try things on my own without fear.

In 2020 when the COVID pandemic started, we tried to be as careful as possible. My mom’s lungs are not healthy and we did not want to cause any risk for her. I started attending classes online from home and I quit my afterschool activities and my part-time job at the local grocery store. It was worth the sacrifice to keep her as safe as we could. We kept an extra stock of food in the basement and we Clorox-wiped everything that we brought into the house. We wore masks all of the time and we washed our hands frequently. When the day came that my mom was able to get an early vaccine, we were extremely happy. Once the vaccine was approved for my age group, we drove two hours to a different town so we could get it the first day it was available. Those vaccines changed our lives and allowed us to start enjoying ourselves again.

In March of 2021, my mom was diagnosed with breast cancer. She was in the hospital a lot for several surgeries and she recovered very slowly. This served as another reminder for us to celebrate each day as we can.

Every day is a gift.

I graduated from high school in June 2021 and I attend college at State University of New York in Purchase, NY. I love it there and I really enjoy the classes. The only sad part is that living in New York keeps me away from my family and friends back in Minnesota. I was able to see my parents a couple of times during the school year and now I am back living with them in Minnesota for the summer. I’ve noticed that my mom has slowed down a lot due to her scleroderma. She despises the cold, especially winter. She owns battery-operated everything- socks, shoes, gloves, jackets. She is not as mobile as she used to be. She wasn’t able to fly out to see me at college (because flying on an airplane at high altitude is difficult) so she drove with my dad, twice.

Finally, the opposite from me, she is very picky about what she eats (because she has digestive issues). We don’t agree on very many food items except we both love Dairy Queen peanut buster parfaits at any time of the day. Despite those changes to her health, we try to enjoy each other and spend quality time together. Last week we were lucky enough to attend the MN Twins vs NY Yankees baseball game. We sat in the back row, which was closest to the main concourse, so my mom didn’t need to climb very many stairs. We had a great time and Minnesota beat the Yankees!

Carpe diem! Seize the day! Don’t fret about tomorrow. Enjoy everything you can today. Appreciate what you have.

– Paul