When Elizabeth, a woman I’ve met only once but have known several years, picked up the phone, my tears began to flow. I had called hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sophie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough to ground me. But I lost my mother to Alzheimer’s by degrees over ten or more years, then finally in early October of 2015.
It seems, too, that I lost a dear friend, a single woman I'll call Stacy, who has no children and with whom I was very close. I had years ago called her in a similar moment of grief over Calvin, needing someone to listen, my mother having long become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like:
"Christy, ever since Calvin was born you’ve been so angry."
She went on to talk about acceptance, compelling me to ask her whether acceptance had to mean the denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find its balance. Hearing this widely-held and appealing theory offers me little consolation, the cosmos often feeling so much as if it tends toward chaos despite its astonishing beauty. After her mention of balance, we lost the phone connection mid-sentence. She rang me back, but I didn’t pick up because I felt more disheartened than before I had called, so she emailed me and began by saying:
you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking.
And while I understood her meaning—knowing we all have our burdens to bear—she's never experienced anything close to what I have with Calvin. Still, I had tried my best to be open to what it was she had said on the phone, though I must admit I probably failed to hide my agitation. She ended her email with this:
my intent is unwavering which is simply to love and support you.
I replied immediately:
i know. xoxoxo
I haven’t heard from her since; it has been nearly seven years. I wonder if she knows about my mother's death. I didn't contact friends when Mom died—didn't have it in me. But people soon learned from reading my blog.
Not long after that phone call, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sophie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. When I reached her I could hear her daughter softly moaning in the background.
For the good part of an hour we chatted about cannabis and a new strain she’s begun giving her daughter, one that helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration, and anger, and about the parents who claim the graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for present and persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, complaints and pity parties. We agreed that being able to vent our frustrations, by writing, cursing and sometimes screaming, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.
Elizabeth wrote to me, after I lamented not being able to talk with her on the phone at the very moment of her most recent crisis:
I always know you are there breathing and cursing.
I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we were next door neighbors. If only.
Breathing and cursing, I mused. What a nice thought, and I felt much better even though we hadn't really spoken.