Parenting With Lyme Disease

“Does your child have any special challenges I should be aware of?”

Two tiny blank lines stare at me, enough for maybe three sentences if I wrote very narrowly. Yes, Aidan is on the autism spectrum and has a variety of specific learning challenges in the classroom, but there was already an IEP file explaining these things at length. There wasn’t space here to revisit those again.

“Does your child have any special challenges I should be aware of?”

Two tiny blank lines, waiting for me to explain. My face was beginning to flush and I could feel the fog in my brain growing thicker as I grew more and more flustered trying to turn thoughts into words on this cheery yellow paper. The neuropathy in my hands was making it harder to grip the pen, and I could see the words on the page start to shift out of focus the longer I tried to keep them in view.

“Does your child have any special challenges I should be aware of?”

I scribbled out lightly, “Yes, I have Lyme disease.”

The pen slipped once again from my now tingling fingers. I stared at those two words: Lyme disease. How could I begin to explain just how much having a disabled parent would impact my child’s school year? My guilt was growing palpable as hot wet tears began to dot the page. How could I tell his new teacher just how much my son has to overcome because his mama simply isn’t like the other moms in his class?

When other children are gently woken by their parents each morning, my son usually uses an alarm to get up for school, just in case mama isn’t fully awake in time.

When other children come downstairs to a hot breakfast, my son often gets himself his own bowl from the cabinet and pours his own cereal, because he does his very best to save mama’s very limited energy for other essential tasks.

When other parents are walking their children to the bus stop and are there waiting when it returns each afternoon, my son walks himself to the corner each morning and walks back each afternoon alone, because we live on a steep hill and Mama very quickly runs out of breath and has trouble maneuvering it with her cane on bad days.

When other parents are helping their kids diligently with homework, my son has a mama who can’t always remember things like spelling and math because her neurological symptoms make these tasks difficult at times.

When other parents are volunteering for field trips and class parties and positions on the PTA, my son has a mama who tries desperately to keep her parent-teacher conference appointment, but may have to show up looking less than presentable if she’s able to make it at all.

“I have Lyme disease.” Those words were blurred beyond comprehension, and I could no longer tell if it was from the tears filling my eyes or the nerves misfiring in my brain. The guilt was overwhelming, and it was more than I could take. That would have to be enough on that for now. I strained to make out the last question on the sunshine colored page so I could just finish and retreat to my bed.

“What are some of your child’s greatest strengths?”

Empathy. The word came to me almost immediately. Empathy. It was quite incredible for a child on the autism spectrum to be so marked by empathy but in Aidan’s case, it was true. We hear it from teachers, from friends, and from Sunday school teachers, all time and time again. It seemed all these years watching the person he loved most struggle through pain and illness had somehow given Aidan an uncanny ability to care so deeply for the feelings and needs of others. Sure, his autism means sometimes it’s harder for him to correctly identify those feelings or needs, but once he does, he’s passionately determined to help however he can. He can often be found offering me a blanket when I’m in pain, wanting to cuddle when I’m having a rough day, or even putting on one of his little brother’s favorite shows when mama needs a nap.

Aidan is also amazingly independent, and he takes great personal responsibility for himself. I began to realize just how much having to learn to fend for himself more had given him skills he would very likely otherwise have struggled with. He wakes himself, he dresses himself, he stays on top of his own morning schedule, and manages his own time. For all my guilt at not being able to consistently do these things for him, I realized just how many valuable life skills my child was mastering in elementary school — many of the same skills we see so many people bemoaning today’s teenagers and young adults are seemingly lacking.

Aidan is fiercely determined, something that didn’t come naturally to him. In fact, one of his greatest struggles in the past was that he was easily flustered, and quick to give up and melt down. I realize now that having a mama who can’t always come in and rescue him, no matter how badly I wish I could, has shaped him. It’s stretched him. It’s helped him learn to work through his problems himself, and has brought out a determination in him to keep going until he succeeds.

The pen fell from my grip yet again. I tucked the form into his folder, zipped his backpack, and returned it to its hook by the front door.

“I have Lyme disease.” And it’s been not only one of my child’s greatest challenges, but also the impetus behind so many of his greatest strengths. There will be so many times this year that I’ll feel strangled by the guilt over all the ways I fall short of the mom I think I should be — so many times I’ll wish I could do better, could be better.

But I will cling to the hope that my son continues to grow in the face of this added adversity — that he’ll continue to find the best in himself when I fall short, that he’ll flourish in strength and character in every place that I am weak, and that one day, when he’s looking back over his life, he’ll be able to remember just how much his mother loved him and will point to her disability as more catalyst than obstacle.