“To be honest, this yearlong stint taking care of Calvin all day, every day is taking its toll on me. At times he’s the sweetest child that exists. At others he totally grates on my nerves. It doesn’t help that I don’t always know what ails him. Time spent with him is at once fulfilling and taxing, stressful and relaxing, unnerving and mundane in impossibly beautiful and tragic ways.”
So began an early April entry in “Calvin’s Story,” a blog kept by Brunswick resident Christy Shake about living with her 17-year-old son Calvin during the pandemic. Calvin was born with an enlarged lateral ventricles in his brain, which created significant neurological problems. Calvin is non-verbal, legally blind, autistic and developmentally delayed. When he turned two he was diagnosed with epilepsy. Christy notes that, “ epilepsy eclipsed all other adversity he’d encountered.”
Christy described a typical day before the pandemic hit Maine in March, 2020. “I’d wake up between 5 and 6 a.m. and change his diaper. Michael (her husband) would prepare his breakfast, give him his seizure medicine and feed him. Calvin would get on the bus for Brunswick High School around 7:30 where he’d be in a life skills class with nine other children.
He’d get home around 2:30. I’d have a nurse come to the house between 2:30 and 5:30 two days a week.”
That all changed when the pandemic closed everything down in March. No more school for Calvin. No more visiting nurses. Michael does all the shopping, cooking and laundry, but Christy has had to oversee Calvin all day every day.
For whatever reason, Calvin seems to be having more grand mal seizures during the pandemic. “There might be two or three a month or there might be eight or ten. We can’t figure it out.” Each seizure usually lasts about 90 seconds. Michael, a full professor of art at Bowdoin, assists when Calvin has a seizure at night.
In a blog post entitled, “Embraces,” Christy wrote, “Just before 3 a.m on Sunday morning. Embracing my son in the wake of his grand mal. His skin is warm and soft, his breathing is shallow; his limbs lanky and long. In the dark I reflect on our Saturday just before drifting off.”
Christy often takes Calvin for rides around Brunswick. “He loves the car,” she explains. “I’ll drive around listening to music and enjoying the countryside while feeding him chopped up fruits and cheese and meat.”
Like any devoted mother, Christy thinks first and foremost about her son, not herself. “Calvin doesn’t have much joy in his life He has no friends. I just want him to be happy.”
Spending so much time with Calvin has shaped Christy’s view of the world. “Raising Calvin has taught me about bigotry and social justice. I’m more aware of how many people are marginalized. I think of all the people who are homeless or in prison. And I’ve learned to be more forgiving of myself and other people.”
Despite the challenges of raising Calvin, Christy remains generally upbeat. “I’m grateful for what we have — food, shelter, a warm space, music, a community of good people. And Michael and I have a rock solid marriage.”
Christy writes about three posts a week on her blog and gets about 12,000 hits per month. She says that writing feeds her soul, but it’s fair to say that her writing feeds a lot of souls. Here are just a few of the comments she has received from readers of her blog:
“You quench my thirst for connection in this long and lonely pandemic lockdown.”
“None of my marathon efforts will ever match yours. Unfathomable efforts by you for so long and with such love, strength and dedication.”
“Thanks for the courage to bare your soul. Such unvarnished truths. And through it all you find the specks of gold.”
“You mention your body. I think of your spirit. Your soul. Your intrepid resilience and gutsy presence.”
“I feel a deep, almost painful love for you and Calvin. My insides wring out every time I read your writing and experience your conviction and strength.
I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains.”
To read Christy’s blog, go to calvinsstory.com.
David Treadwell, a Brunswick writer, welcomes commentary and suggestions for future “Just a Little Old” columns. dtreadw575@aol.com.
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