Remembering the fun-filled summer of ’98 with my teenage caregiver
It was also the first time a caregiver stayed with me during the day
Written by |
Do you remember the summer of 1998? It’s been a while, so let me remind you.
It was the season of blockbuster movies like “Saving Private Ryan” and “The Mask of Zorro.” The airwaves were filled with hits by stars like the Backstreet Boys and Shania Twain, and the boys, aping teen idol Leonardo DiCaprio, wore floppy, gelled hair over their eyes. There was no Google yet — it wasn’t introduced to the world until September — so we all didn’t have instant access to all the answers of the universe.
It was the summer after my freshman year of high school, and I was an awkward 15-year-old girl with glittery lip gloss and SMA. It was also the first time I had a caregiver stay at home with me during the day while my parents went to work.
I hated the idea at first, and I’m sure you can imagine the teen girl drama my parents endured — I didn’t need or want a babysitter! However, because of my disability, I did need someone to stay with me and my brother, to prepare lunch, help in the bathroom, pick up things we dropped, reach things we couldn’t, and generally make sure we didn’t get ourselves into any serious predicaments.
But I dreaded spending my summer with someone like Mary Poppins or Mrs. Doubtfire.
My summer with Bethany
I’m thankful my parents were so much cooler than I gave them credit for. Iinstead of seeking a professional nurse, a British nanny, or an older retired person, they hired a 19-year-old college student named Bethany, the daughter of my dad’s friend and co-worker. She was pretty, goofy, bubbly, and creative, and she never treated me like I was a helpless child. In fact, we became friends that summer, and I saw her more as a big sister than a caregiver.
Bethany came to my mind recently, so I sent her a text message and asked her what she remembers from that experience. I wondered if it was strange or difficult for her to hang out with two kids in wheelchairs all summer, and how she felt about all the things she had to do for us. Was it traumatic or inspiring, burdensome or enlightening, awkward or natural? It didn’t take long for me to get a text response. She wrote:
“One thing I do remember is making a face mask that was made with fruit and I think we got the recipe from Brio [a Christian teen girl magazine]! Also, we would watch “Boy Meets World” and “Dexter’s Laboratory.” Oh, almost forgot — we would turn on music and dance! That was pretty fun!”
Bethany’s message made me smile, and I was surprised that her reflections had nothing to do with my brother’s and my disability, wheelchairs, or unique caregiving needs. Even more surprising is that my memories aren’t about those things, either. Instead, I remember a summer that felt ordinary in the best possible way, filled with music, laughter, goopy face masks, and the easy dignity of being seen, known, and treated like a friend.
I think maybe that is what great caregiving does at its best: It meets real needs without letting those needs define or limit one’s identity or experience. It leaves plenty of room for friendship, joy, and a bigger story.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.