Updated: Sep. 10, 2016
“Are there any unique challenges your child faces that I should know about?”
I stared at the blank lines on the form, feeling the weight of the question. Sure, my son Leo is on the autism spectrum and has a few specific learning difficulties, but there was already a detailed IEP on file. I didn’t have the space to go over it all again.
“Are there any unique challenges your child faces that I should know about?”
The lines seemed to mock me as I struggled to find the right words. My cheeks flushed with heat, and the fog in my mind thickened, making it hard to articulate my thoughts on this cheerful yellow paper. My hands tingled from the neuropathy, making it a challenge to grip the pen, and the words began to blur together as I focused harder.
“Are there any unique challenges your child faces that I should know about?”
I scratched out, “Yes, I have Lyme disease.” The pen slipped again from my fingers, now numb and tingling. Those two words loomed large: Lyme disease. How could I convey the impact of having a disabled parent on Leo’s school year? Guilt washed over me, and tears began to dot the page. How could I explain to his new teacher all the hurdles my son has to overcome because I’m not like other moms?
When other kids are gently roused by their parents each morning, Leo relies on an alarm to wake him, just in case I’m not quite awake. While other children come down to a warm breakfast, he often makes his own cereal to conserve my limited energy for other tasks. When other parents walk their kids to the bus stop, Leo walks himself to the corner each morning and back home each afternoon since the steep hill tires me out quickly, especially on bad days.
When other parents help with homework, my son has a mom who sometimes struggles with spelling and math due to her neurological symptoms. And when other parents volunteer for field trips, my attempts to attend parent-teacher conferences might leave me looking less than put together if I can manage it at all.
“I have Lyme disease.” Those words blurred together, and I couldn’t tell if it was the tears in my eyes or the nerves misfiring in my brain. The guilt felt like a weight I could hardly bear. I just wanted to finish the form and retreat to the comfort of my bed.
“What are some of your child’s greatest strengths?”
Empathy came to mind immediately. It’s remarkable for a child on the autism spectrum to exhibit such profound empathy, yet that’s exactly Leo’s gift. Teachers, friends, and even Sunday school leaders often comment on how deeply he cares for others. Watching me navigate pain and illness has given him an extraordinary ability to sense and respond to the feelings of those around him. Sure, he sometimes struggles to read social cues, but when he does identify a need, he’s passionately committed to helping. Whether it’s offering me a blanket on tough days or putting on his little brother’s favorite show so I can take a nap, his compassion shines through.
Leo is also impressively independent, taking responsibility for himself in ways I hadn’t anticipated. I realized how much having to manage on his own has equipped him with valuable life skills that many kids his age may lack today. He wakes himself up, dresses, and keeps to his morning schedule without needing a reminder.
He’s fiercely determined, a trait that didn’t come easily to him. In the past, he would easily get overwhelmed and give up. However, knowing that I may not always be there to rescue him has pushed him to find solutions independently and develop a resilience that I admire.
As I tucked the form back into his folder and zipped up his backpack, I reflected: “I have Lyme disease.” This reality has not only been one of Leo’s challenges but has also fostered many of his strengths. There will be moments this year when I’ll feel overwhelmed by guilt for not being the mom I wish I could be. Yet, I hold onto the hope that Leo will continue to thrive despite these challenges—that he will grow stronger in character and resilience, and one day, when he looks back, he’ll see his mother’s love and recognize her disability as a catalyst for his growth.
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In summary, parenting while managing Lyme disease can be challenging, but it also fosters resilience and empathy in children.