Reflections (Real Talk)
Friday, November 22nd marked my 35th birthday. I can’t believe it! It has certainly been a wild 35 years and I’m sure my family would agree. As my mom has always said, this life has allowed us to have some of the highest highs and lowest lows.
I’ve met some of the most amazing people. I got to literally fly a small 4 passenger airplane at 11 years old, attend Trails Edge Camp for Ventilator Dependent Children for 9 summers, meet others with Escobar Syndrome and Arthrogryposis at AMC Conferences, try a variety of adaptive sports, be creative through the arts, and finally have a truly magical Wish experience at Give Kids The World Village and Disney World when the future regarding my health was unclear when I was about 7. I’m so thankful for the love and support of my family who allowed me thrive academically. They also supported my desire to spread my wings and live on campus during grad school… something I wasn’t sure would be feasible because of needing assistance with various activities of daily living and using my ventilator at night. My parents even “went back to school” by staying with me overnight 3-4 nights a week that second year when the care agency had difficulty finding a worker for me. (My dad loved it – Wendy’s right downstairs and late night tv, what’s not to like?)
On the other hand, things haven’t always been easy. Surgeries, including something like an 11 hour anterior/posterior spinal fusion when I was 4 . Health scares. A survival flight trip from Dearborn to Ann Arbor. A time when I coughed so hard because of mucus buildup (wasn’t suctioned enough) that I self-extubated and stopped breathing. Not to mention the social / emotional effects of growing up with a fragile health situation and quite apparent physical disability. I was faced with thinking about how I wanted my future to look medically should certain decisions needed to be made when I was in early high school. My friends and family did a good job of making me feel included and loved, but I won’t lie and say it wasn’t all perfect. There were times when I did feel left out, disappointed or sad about the things I couldn’t do or wasn’t experiencing like my peers. These feelings aren’t as prominent now that I’m older. But they can still creep in sometimes. Instead of feeling bummed about not going to a dance it’s “I wish I could be as active as my peers” or “I wish I didn’t have so much pain or fatigue.”
Celebrations (Fun Stuff!)
For my main birthday gift from my family I attended a 2 day Harry Potter movie marathon at The Henry Ford Giant Screen Experience. This year marked the theater’s 25th anniversary which is why they opted to have the marathon of movies. I’ve been a fan since the beginning and attended many a midnight showings at The Henry Ford back when they were first released. So, when this marathon was announced I knew I had to see at least some of them. I wanted to try seeing all 8 but I was really nervous about my energy. So, we purchased tickets for 2 movies per day with the idea of deciding the day of about the others. Also, since I didn’t want to go alone my parents switched off for different movies. This meant that my dad saw a total of 3 movies and my mom saw 5 movies over the 2 day period. Cara was super helpful by making sure we got where needed to be with our tickets and had plenty of popcorn and pop. It was a very long weekend but such a fun way to relive the magic of the movies.
On my actual birthday I worked a bit, did some diamond dot crafting and took a nice nap on the couch. My mom surprised me with a fun balloon and sweet treats. That night we went to Applebee’s where we met up with my uncle for dinner. It was great because we had Andrea as our server, who I knew from my many trivia nights with Danielle a few years ago. The dinner ended with a hot fudge sundae (minus the normal singing). After I got home and opened a few more gifts from my parents and sister I headed to bed feeling very loved and blessed.
