I have this memory in my head, a happy vision of an otherwise grueling time. My ten-year-old towhead, grinning from ear to ear. I can hear the giggles if I close my eyes. His English lesson that day came in the form of a rousing game of Mad Libs. Teaching without him even knowing he’s being taught always makes me feel like I’m winning at the homeschool thing.
I can see him biting the eraser end of the pencil as he thinks hard about people, places, and things. One lanky leg dangling off the side of my bed, the other draped over the floral quilt I was nestled under. I feel weak, but his laughter feeds me. The chemo fog wrapped around my brain makes it difficult to find words when it’s my turn, but I don’t want to quit, not while he’s having this much fun. This is homeschool when you’re sick.
I hadn’t planned on being in that place, teaching grammar in between oncology visits. I was healthy when I first stumbled upon homeschool. Years prior, after a less than stellar preschool experience, homeschool sort of found us.
That first year of homeschool worked well enough. We were still doing all the things we’d been doing at the preschool age, with some more structured work like phonics and learning to write letters. Writing, I found, was a task he really did detest.
By the end of that year, he felt the pull of ‘real’ school and I couldn’t refuse him his right to try. Despite all my fears, he did thrive in first grade outside of our home. He had two fabulous teachers. He quickly learned to read books independently. He wrote words and sentences, still detesting every minute of it, but keeping pace nonetheless. We had successfully made the transition and our little boy was doing well.
That school year was a big one for me, but not in the way it was for him. While he was enjoying his time learning and playing in school, I was back and forth to various doctors trying to figure out exactly what the odd lump on my left hip was. There were appointments and scans of all sorts over the first half of his school year. Just after Thanksgiving break, two weeks after a biopsy in the office of a surgical oncologist, I learned exactly what the lump was.
That was the day I learned I was one of the 900 people diagnosed every year in the United States with a rare sarcoma called a desmoid tumor. Two weeks before Christmas, that tumor was removed from my leg along with a portion of my muscle. By then, the tumor had grown to the size of a softball. I returned home three days later, unable to walk on my own and uncertain of my future with a disease I had never even heard of before diagnosis.
When school resumed after the holiday break, I was finally healed enough to begin physical therapy. PT is grueling and exhausting work, but over time I had graduated from walker, to cane, to finally walking on my own again. In between all that work were doctor visits and scans, appointments aplenty.
Through each of those I would think to myself, I’m so grateful he’s in school. How would he learn? When would he learn? It would be so difficult for him to see my in this condition. How could I possibly do it all?
As my health improved he moved onto a new grade, second grade, and we both had all the hope we could muster for a rosy future. Second grade started out okay, not great, but perhaps that would change. There were bumps in the road. Math became a problem, yet somehow not enough of a problem to receive any help or guidance in the matter.
My boy was cast in the class play, a new and exciting project to work on. But there was testing, too much testing for a kid that never cared much for sitting. Complaints about recess, or a lack thereof, became the daily lament. Each day was more exhausting than the next. That’s when the requests to go back to homeschooling began.
I’m a ‘start what you finish’ kind of mom, so we vowed to stay to the end of the year, but I could see the agony wear on him. Each day became longer and the cries for homeschool grew louder. It was then that I discovered my tumor had recurred. Two, in fact, had begun to grow in place of the one removed a little more than a year before.
He began the third grade while I was on Tamoxifen, a treatment my oncologist hoped would stop the growth of my tumors, and I worried about the what ifs in my future. Homeschooling at this juncture, when my health was so precarious, seemed impossible and almost selfish. What if I need another surgery? How will I be able to teach? When will he learn? I don’t want him to have to see me sick.
By the middle of third grade, my son was worn out from school to a degree that concerned our entire family. With so much of my medical future unknown, this seemed liked the worst space in time to make a decision to homeschool again. The decision, though, seemed to be making itself for us.
After a particularly long day at school, I accepted what I’d been fearing for so long. Our child needed homeschool. And, if I needed surgery in the near future, we were just going to have to figure it out. Almost as terrified as I was the first time around, I made the jump again. The very next day we signed him out of school.
The results of my next scan were not what we’d hoped for. While Tamoxifen had killed one of my tumors, the other one continued to grow bigger and surgery seemed inevitable. Prior to making the final decision about surgery, I was referred to the sarcoma specialist, who had been studying the latest options for my rare disease.
Newer, more effective treatments were being discovered and surgery was being looked at as a last resort, in my case. A new study was showing promising results for the effectiveness of one particular oral chemotherapy. I began my course in short time.
Oral chemo is sometimes referred to as ‘chemo lite’ because, when compared to traditional chemotherapies, its side effects are often slightly less intense. Even still, it’s no walk in the park. Nausea, diarrhea, body aches, thinning hair, fatigue, and hypersensitive, painful skin became my daily battles, sometimes in bits and pieces and sometimes all at once. And medications used to abate these side effects often had their own difficulties.
Over the course of a year there were days like that happy memory of a giggling boy and his tired mom playing Mad Libs. Those were most of the days. I was tired, nauseous, achy, but I got through. We made it work. Some days I felt like me, 100%. On those days, we were able to get it all done, whatever the plan happened to be.
There were the other days, though, where he did nothing but play video games and run outside with his friends. Days where I’d be too exhausted to shower. Days where I felt like I’d made a mistake and I’d live to regret the decision to homeschool while sick. Days where the guilt consumed me. At least I can say there were less of those days than the others.
Today, my son would be in the ninth grade had he returned to ‘real’ school, but we made it through my year of chemo and just kept on going. Now, my daily battle is teen angst, including heavy sighs and eye rolls. As for writing, he still detests it, but he keeps pace. Math chugs along, slowly but surely. We found our groove once again.
The nature of my rare disease is complicated. My two tumors cannot be surgically removed without risk of future recurrence and enough damage to my leg to possibly prevent me from ever walking on my own. Oral chemo, for now, is my only option for treatment should the tumors start growing again.
And, unfortunately, they have. I find myself in this space once again.
The tumors have not grown enough to begin treatment again, but that day will soon come. So I’ve had to ask myself if I will continue to homeschool when I am on chemo again. More so, should I? That all depends on a multitude of factors. My son is older and capable of doing more work on his own, but the work is much harder now. Will my foggy brain be able to keep up? Will I have the energy to get him where he needs to go if it can’t?
As I sit here, on the precipice of being sick again, I can tell you I don’t know the answer to these questions. I only know that I’ve done it before, so the possibility exists that I can do it again. We would all have to decide it’s the right thing to do, as we did before. And even though it was difficult trying to juggle it all when I felt so weak, I do not regret my time spent teaching while sick. Thankfully, neither does he.
For all my fears of him seeing me ill, it allowed him to watch me get up after being knocked down again and again. That’s an education in itself. He got to see me persevere, adapt, and cope with humor. In turn, he got to see himself do the same. He did learn all the ‘book’ things I feared he wouldn’t. It wasn’t always pretty, but we made the best of a challenging situation.
The decision to homeschool while sick is a very personal one and there is no right or wrong answer, only what works for you. The sick days are not the same as when you’re well. They are their own. Some messy and jumbled, they may not always feel right, but that doesn’t mean they are wrong.
As it is while enduring illness, homeschooling while sick requires patience and forgiveness, with yourself and for each other. Life won’t be the way it was, but you can figure out how it needs to be. And, I assure you, there will be laughter and learning along the way.