By Diane Flacks …
I used to be an anxious mom. I believe there is a continuum of anxiety for new parents with one extreme being the “put a sweater on him!” mother and the other being the “let him be” mom. I was a “put a sweater on him!” mom. I got this from my mother. I followed her proud Jewish tradition of spitting against the “evil eye”. We call it K’nein a hora, which roughly translates as, “God forbid you should celebrate something good before it actually happens, and then almost wish a bad thing to happen instead – what are you, crazy, tempting fate?! Why don’t you just go bang yourself in the head with something.”
With our first son, I was constantly worried that something would happen. I was only cured from that fear when something did happen –to our second son.
He was born with two critical medical conditions that required he spend most of his first year at SickKids Hospital in Toronto.
During our sojourn there, and in the frequent-flyer years to come, I could not have imagined the suffering I would witness or the deep humanity I’d encounter, both from the medical staff and other parents. They became our world and our family.
We also became unwitting “roommates” of the unexpected. Randomness ruled supreme. Like a cross between the Dark Lord Voldemort and Kramer from Seinfeld, “Randomness” would slide into our son’s hospital room, rummage around for something to devour, and then bang, slide out. To cope with the sickening hope/despair rollercoaster that we were on, I had one bag of tricks. And it had one trick in it: make them laugh. Crack a stoic doctor, bring forth giggles from the mother of a toddler on the cancer ward, share a subversive observation with an over-worked and underappreciated nurse practitioner. It wasn’t entirely altruistic; it was fuel for my soul.
This tactic worked even under the most dire circumstances. I’ll admit, though, there were times when I’d fantasized about having a temporary breakdown – more of a breather, like, breaking a leg – so someone would have to take care of me for a few weeks. But I couldn’t. I had my son, my partner, and our older son. I had to keep it together.
Finally, by the time my son was about five, we saw light at the end of the tunnel. He was in school, managing well. Life started to feel normal. Then why did I feel dark, bleak and exhausted?
Depression isn’t simply sadness, and it isn’t pretty. It’s angry, isolating. I felt like there was a river between me and other people, and I could not cross it.
It was ironic that just while my son was becoming independent and free, I couldn’t enjoy what he’d fought so hard for. That made me feel ashamed, and even darker. Nothing was funny anymore. I didn’t see the point.
I started seeing a psychiatrist who gently diagnosed me with mild PTSD (duh) and situational depression. Then she explained that this is how trauma works. That once the kid is okay, that is the best time for a parent to finally crack. That’s the time you can.
There are concrete markers for depression, including loss of appetite, lethargy and libido. For me, that marker was jokes. Could I make any? Could I enjoy any?
The cure for my situational depression (besides some lovely drugs, thank you) was to revisit the moments when there was no laughter, the images that still burn me up from the inside. The times I had to hold him down for IVs and feeding tubes, the terrified look in his eyes when he was coming off morphine, that ugly fight with the nurse who told me that holding my screaming child would only spoil him, the image of a dad walking into the hospital holding his daughter over his shoulder as she kicked him repeatedly in the chest and screamed, “I want to go home! I want to go home!”, the boy whose blood was being pumped through his body by an external network of tubes, and who wanted to ride in a train.
These incendiary moments have to be remembered, given their due, and then the memories can start to let you go. Ironically, the unpleasant process of remembering finally allowed me to laugh again.
The other night, my two boys were wrestling on our bed, knocking lamps over, bonking their heads, and repeatedly kicking each other’s “vulnerables.” I was watching, cringing, marveling at their bendy bodies. Suddenly, I couldn’t help but laugh. This loud, destructive, vicious, unfettered boy play is what we’d always hoped for, wasn’t it? And it was hilarious.
Emmy-nominated writer and playwright Diane Flacks recently turned her sick child experience into a play called Waiting Room. It premiered at Toronto’s Tarragon Theatre.
By Carley Sparks …
When the doctor told me my three-year-old daughter Alia was having seizures it felt like a crisis. But I didn’t panic. I didn’t cry. I thought, of course she is. I immediately went into crisis mode and started scrolling through the mental list of questions I should ask: Do we know what type of seizures she’s having? What is her long-term prognosis? Will she ever be able to speak normally?
The answer to all my questions was a resounding ‘We don’t know.’
By the time I returned to the waiting room, the reality of the diagnosis started sinking in and I forgot to book the follow-up appointment. Outside, finding the car seemed impossibly complex. Ten minutes later I was crying in the bathroom at Harvey’s while Alia patted my arm, asking “What?” over and over again.
Once the initial shock wore off, I was furious. At the condition. At myself. But mostly at my daughter’s first pediatrician who had brushed aside my concerns so many times. The next day, I wrote a scathing review on RateMD.com, complete with an assortment of colourful and decidedly unflattering language. This diagnosis, I felt, was long overdue.
Since she was a baby, my daughter had had this bizarre little twitchy jerk. The best I can describe is the startle reaction in babies where they instinctively grab at you. Her shoulders and arms come up an inch, her hands open slightly and she stares off – for all of a second. It’s so fleeting that most people don’t notice it; even my husband wasn’t sure he’d seen her do it.
For three years, I had been telling her doctor and her regular checkups. And for three years, he had dismissed it as nothing to worry about. The first time, he tossed a casual “I’ve never heard of that” over his shoulder as he walked out of the room.
I didn’t know what to think. It didn’t feel right. I certainly didn’t see other kids twitching. But then I’m not exactly a graceful person myself. It seemed entirely plausible to think maybe she takes after me. And anyway, she was meeting most of her developmental milestones.
Alia crawled and walked and climbed on schedule, if not ahead of most kids. She regularly changed her own diaper once she figured out how! The only thing she lagged in was speech. She was slow to use words and when she finally started, it was with great difficulty – she could only parrot one letter sound at a time and struggled to recall even simple words. So at her three year checkup, we were referred to Toronto Preschool Speech & Language Services for professional assessment and later, lessons. The speech therapist assigned to Alia (and the woman who would become my personal hero) asked if there was anything unusual I’d noticed, apart from the language delay. I told her about the jerk. She immediately suspected seizures.
Our pediatrician referred us to a colleague who offered: “Maybe she has ADD.”
Based on the symptoms I described, this new pediatrician thought that seizures were unlikely, but said he’d send her for an EEG at SickKids Hospital if I wanted. This time, I pushed for it.
Several months later, it turns out our speech therapist was right. My three-year-old has seizures –and she has a lot of them every day.
The new doctor expedited her MRI scan. It revealed a congenital defect on the left occipital and temporal lobes of Alia’s brain, the areas that control vision and language. He’s treated her aggressively with pharmaceuticals. (She’s currently on three different drugs.) He even gave me his email address, which I abuse regularly. (#sorrynotsorry.)
Despite excellent care, Alia hasn’t had one day’s reprieve from seizures. In fact, they’re rapidly getting worse.
Now we’re exploring brain surgery. In all the dreams you have for your children, hoping that they’re candidates to have brain parts removed is not among them. But even that starts to feel like no big deal after a while.
I don’t know what the future holds for Alia. There are times when I’m completely overwhelmed by my fears for her. But I don’t feel angry with her (former) pediatrician anymore. I didn’t even publish the RateMD review. People make mistakes. Mine was giving his judgment the benefit of the doubt instead of my own.
For now, I just focus on doing everything possible to get Alia the help she needs. Some days that’s simply giving her a hug after she has a seizure and telling her she’s a tough girl.
Carley Sparks is a freelance writer. She lives in Toronto with her partner, two mischievous kids and elderly Jack Russell terrier.
Originally published in ParentsCanada magazine, Feb/Mar 2015.