As we are sitting here during quarantine, we are both sitting here thinking about the days when we were able to leave the house and go places, not unlike everyone else. But Charlie had written a few thoughts about our trip to Boston back in September 2019.
How Boston came to be:
Margaret and I started planning the trip in the middle of July. I just threw out the idea and she loved it. We used TripAdvisor to find the activities to do and Facebook recommendations for the places to eat. We then wrote an outline of each day as a guide, (we kind of used it.)
First trip without parents:
It’s something I thought would never happen, but when we got the okay it was a surreal feeling. Margaret texted me “STOP, NO WAY?! The day of the trip time stood still, but when we were finally off I felt a great sense of freedom and independence. It didn’t really set in until we got into the room, I couldn’t stop smiling.
Our first trip together:
Boston was my first trip without my parents ever, but I wasn’t nervous at all. I trust Margaret with my life and our comfort level with each other is very high. We didn’t get to Boston until 10:30 and we were exhausted. That night was the first time we slept together and it was arguably the best nights sleep I’ve ever had. The next three days were pure happiness from the activities to dinners and everything in between. We can’t wait to do another trip one day soon.
So here I am sitting in my bed watching videos on my phone and texting Charlie(what else is new haha). He sent me a link to an article and said “THIS IS YOU.” The article was from the mighty.com and it was titled “What It Means to Love Someone with Cerebral Palsy” which was written by a girl named Ashley Burnside back in February of 2017. “The Mighty” is a website that has created a community of support for people who are facing health challenges as well as the people in their lives. They are partnered with companies such as the American Foundation for Suicide Prevention, National Down Syndrome Society, The Ehlers Danlos Society, National Organization for Rare Disorders, National Alliance for Caregiving and of course the Cerebral Palsy Foundation.
Not going to lie, when I first opened the article I thought it was going to be some sappy article from a mom of a child with Cerebral Palsy and how their child is their little hero. But to my surprise, the article was not that at all. It was a young girl that wrote it like I mentioned before. She started with a childhood memory about knowing at the age of four that according to society, people with disabilities are not likely to get a fairytale ending. She was convinced that her disability would always hold her back.
She says “Loving someone with cerebral palsy does not mean you overlook their limitations. It does not mean you ignore the imperfections that make their body unique and different. Loving someone with a physical disability means you love them with their disability. It means you know every aspect of their disability, and it only makes you want to be that much closer to them.” This paragraph is exactly what I want people who question interabled relationships to understand.
I love each and every part of Charlie, from helping him get dressed, cutting food, walking behind him on uneven surfaces, to waking up with him during spasms at the wee hours of the morning. His disability is a huge part of his life, it affects him everyday. How could I not love it? It would be like not loving someone because they can’t grow a beard.
I wouldn’t trade the nights that I haven’t slept because of was holding him during spasms for the world. I will always be his voice when people have a hard time understanding what he is saying. I have no problem telling strangers to move out of the way before I run them over with his wheelchair and they don’t hear the first time either of us say “excuse me” or “watch your back.”
Thank you Ashley for this incredibly insightful article. You said all the things that Charlie and I could not find the words to do so. I highly recommend that you all check out the article, here’s the link: