“Is there anything unique about your child that I should know?”
Two small blank lines stared back at me, barely enough for a few sentences if I wrote very small. Yes, Ethan is on the autism spectrum and faces various learning obstacles in school, but the details were already thoroughly documented in an IEP. There simply wasn’t room to elaborate here.
“Is there anything unique about your child that I should know?”
Those blank lines loomed, waiting for my response. My cheeks flushed, and as I struggled to articulate my thoughts onto the bright yellow paper, I felt the familiar heaviness of brain fog settling in. The neuropathy in my hands made it challenging to grip the pen, and the words on the page became increasingly hard to focus on.
“Is there anything unique about your child that I should know?”
I wrote hesitantly, “Yes, I have Lyme disease.”
The pen slipped from my tingling fingers again. I stared at those two words: Lyme disease. How could I express the impact of having a disabled parent on my child’s school experience? Guilt washed over me, and tears began to blur the ink on the page. How could I tell his new teacher how much Ethan has to overcome because his mother isn’t like the other moms?
While other children are gently woken by their parents each morning, Ethan relies on an alarm clock to get up for school, just in case I’m not fully awake. When other kids come downstairs to a hot breakfast, Ethan often serves himself cereal, trying to conserve my limited energy for more essential tasks. While other parents walk their kids to the bus stop, Ethan makes the trek by himself each morning and returns alone in the afternoon, as I struggle with the steep hill leading to our home.
When other parents assist with homework, Ethan has a mom who sometimes can’t recall basic spelling or math due to her neurological symptoms. And while other parents volunteer for school events, I do my best to keep our parent-teacher conference appointments, even if I show up looking less than my best.
“I have Lyme disease.” Those words felt incomprehensible, either from the tears blurring my vision or the nerves misfiring in my brain. The guilt was suffocating, and it felt like too much to bear. That would have to suffice for now. I forced myself to read the last question on the sunny page so I could finish and retreat to my bed.
“What are some of your child’s greatest strengths?”
Empathy. The word immediately came to mind. It’s remarkable for a child on the autism spectrum to possess such a strong sense of empathy, but Ethan truly does. We hear it from teachers, friends, and Sunday school leaders repeatedly. Watching me navigate pain and illness has instilled in Ethan an extraordinary capacity to care for others’ feelings and needs. While his autism sometimes complicates his ability to identify those needs, once he does, he is determined to help in any way possible. He often brings me a blanket when I’m in pain, wants to cuddle during tough days, or even puts on a show his little brother loves so I can take a nap.
Ethan is also impressively independent, taking significant responsibility for himself. I’ve come to realize how much his need to fend for himself has equipped him with skills he might have otherwise struggled to develop. He wakes up, dresses himself, keeps track of his morning routine, and manages his time effectively. For all my guilt about not consistently being able to do these things for him, I see that he’s mastering valuable life skills that many young adults today seem to lack.
Ethan is fiercely determined, a trait that didn’t come naturally to him. He used to become easily flustered and was quick to give up. I now understand that having a mom who can’t always come to his rescue has shaped him. It’s pushed him to learn to solve his own problems and cultivated a tenacity to persevere until he succeeds.
The pen fell from my hand once more. I tucked the form into his folder, zipped up his backpack, and returned it to its hook by the front door.
“I have Lyme disease.” It has been one of my child’s greatest challenges, yet it has also served as the foundation for many of his strengths. This year will undoubtedly present moments of guilt as I grapple with the ways I fall short of the ideal mother I envision. But I hold onto the hope that Ethan will continue to thrive amid these challenges—that he’ll discover the best in himself when I falter, and that he’ll grow in strength and character wherever I am weak. One day, I hope he will reflect on his life and recognize just how deeply his mother loved him, viewing her disability as a catalyst for his growth rather than an obstacle.
This article was originally published on September 10, 2016.
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Summary:
This personal reflection explores the challenges and strengths of parenting while living with Lyme disease. The author, Laura, shares insights about her son Ethan, who, despite being on the autism spectrum, has developed remarkable empathy and independence. Laura’s disability has shaped Ethan’s character and skills, presenting both challenges and opportunities for growth. Ultimately, the piece conveys hope that Ethan will continue to flourish in the face of adversity.