By Beverly Burgess
There’s a place that I don’t like to visit. I stayed there for quite a while a few years ago, and some days it unwillingly calls me back. Instead, I dig in my heels like a petulant child, unwilling to obey.
More than eight years ago, I thought I might never see my children or husband again. In August, on my birthday to be exact, I was working in the ICU as a registered nurse on the night shift. I didn’t feel great going into work that night, but didn’t feel bad enough to stay home either. I was tired and thought maybe the flu was coming on, but brushed it off; because calling out sick on the night shift is pretty much grounds for firing where I worked. The sick patients needed me, I told myself.
Nurses (and mothers) don’t get sick…except when they do.
Days before my nursing shift, I pulled a tick out of my groin. The little bugger seemed quite happy in it’s dark, obscure environment. It’s also good reminder to check all your bits and parts after gardening. I’ve pulled hundreds of ticks from me in the past; they are a casualty of living out here in the country. This tick was different.
By one a.m. on my night shift, I was profusely sweating, and had shooting pains in my legs and throughout my body, like nothing I’ve ever felt before. I was disoriented, had blurred vision, and my skin hurt. Something was very wrong, and there was no choice but to head to the emergency room. When the lab work came back, the doctors diagnosed me with Lyme disease, gave me antibiotics, told me I’d be fine in a week or so, and sent me on my way.
I wasn’t fine.
While the fever subsided, the coming months were fraught with joint pain, random swellings in my body, chest pain and heart palpitations, difficulty breathing, more disorientation, rashes, a headache that wouldn’t subside, and frightening other symptoms—like my inability to comprehend anything I read. I wore sunglasses at all day because the bright lights blinded me. I spent hours in bed even after a full night’s rest; but no amount of rest ever refreshed my weary body. I saw a rheumatologist, dermatologist, neurologist, ophthalmologist, pain specialist, cardiologist, and osteopath, and each declared I should be cured of Lyme disease. But my body continued to betray me, and my health was rapidly deteriorating.
Eventually, I found a Lyme specialist who tested me for co-infections and auto-immune disorders. Long story short, she found three other tick borne co-infections that the initial antibiotics didn’t treat, and thought I had Lyme meningitis. It had been more than eight months since my initial diagnosis and the massive infection was wide spread by now. It would be a tough road, she told me; organ damage has likely occurred from the untreated infection. My brain MRI showed lesions related to Lyme too. Within three days of the new diagnosis, I had a PICC line (like an IV but more permanent) placed into my upper arm and placed close to my heart. The next ten months on IV antibiotics were brutal, and I was hospitalized several times due to complications from the Lyme disease. There were days when the doctors weren’t sure if they could beat the infection, and worse, my liver and kidneys were failing from the medications that I needed to treat the infection.
So what does my story have to do with homeschooling? Everything. During the time that I was ill, we continued to homeschool our kids. My husband worked mostly from home when I was hospitalized, and covered some basic math and language arts with the kids. We struggled with whether to return the kids to public school, because how could a mother who couldn’t read, possibly teach her children? How could a mother who slept most of the day, be there for her kids? How could a mother who was hooked up to an IV pole for six hours a day, even care for her children, never mind homeschool them? My husband and I decided to keep them home, but as each month passed with no end in sight to treatment; we questioned our decision.
Ultimately, looking at the big picture helped us, and we looked for ways to continue homeschooling despite my ongoing illness. My husband worked on math with the kids when he came home from work. While I was still had difficulty comprehending what I was reading, the kids were happy to snuggle on the couch and read to me. We watched tons of Netflix documentaries to cover history and science. The kids watched and learned a ton of science when the home care nurse came to visit and change my bandages. She’d bring charts on what the IV looked like inside my body, and what it was doing to get me healthy. She talked to them about handwashing, germs and hygiene too. The kids got their physical education by helping me with physical therapy. We stripped their learning down to the most basic level we could manage, and had to be okay with letting go of some stuff that we just couldn’t do.
Having a mother alive and present, was far more important than any worksheet needing completion. The reality is that had my family not been there for me, I’m not sure I would be here at all. Having my kids near me, when illness loomed, healed me in so many ways. In a sense, homeschooling saved my life. My kid’s may have been missing some academic instruction during this time, although, in retrospect, I don’t think they were. We found ways to make it work. My kids learned a valuable lesson about the importance in caring for family. They learned patience, and got a taste of what every parent goes through with their own children; when they walked at a snail’s pace with my IV pole down long hallways. They learned determination and perseverance, as they watched me fight illness each day. They learned courage, as they watched me settle into being okay with the unknown future. My kids learned honesty; that no matter how difficult things seemed, I would always tell them the truth. My kids learned about being present, because when illness strikes, it’s all you can do to live in the moment. I watched my kids worry too much about me too. That’s not a burden any parent wants their child to go through, but what resulted was deeper conversations about feelings and hopes. We all learned that when a family member is sick, it’s not just their fight, but everyone’s. Healing happens faster when your family is also your care-team.
Now nine years later, I still fight. Illness has left some nasty things behind as a daily reminder of those lessons. It’s never far from me. What remains is cardiac issues, muscle weakness that causes me to use a cane, and an occasional hospitalization for what our family calls, “a 30,000-mile checkup”! And recent years have taught my kids more lessons about their mother and how life works. I wrote and published my book— (take that-can’t read a paragraph!), I started a business helping other homeschoolers, I volunteer, I push through. Every day I push through.
Homeschooling with illness is difficult. Don’t let anyone tell you differently. My grandmother always taught me to look for the lessons even in difficult times. Remembering that others have walked this road before me, is encouraging. It’s important to remember that you are not alone and you need to pull strength from others. Homeschooling with illness is not something I would wish on anyone, but the lessons I learned have been invaluable. And that has made all the difference.