I am warrior mom: Hear me cry and roar

By D. Christine Brown

It was the morning of our son Lucas’s 10^th EEG since his acute brain inflammation in September 2011 and subsequent autism diagnosis.

It was cold and raining so we drove to SickKids hospital instead of walking. Lucas’s last EEG was over a year ago and it was still abnormal then on the left side of his brain, only slightly improved from the previous one six months earlier. I vowed that this time, I would accept the results, whatever they were. It is what it is. What will be, will be. I was too scared to get my hopes up high.

After Lucas was sedated and the testing underway, my husband went down to get coffee and breakfast. I watched the computer monitor and burst into tears. The brainwaves looked identical to last year, and with each abnormal spike, the attendant typed in a message marked by a yellow rectangle.

“You aren’t trained in reading EEGs,” my husband reminded me on his return.

The way my husband and I have grieved since our son’s brain injury couldn’t be more different. I have been plagued with sorrow. My husband has shown no reaction. His behaviour hasn’t changed at all. I have been an “extreme caregiver,” to quote author Donna Thomson, and a mother warrior. My husband, on the other hand, seemed to return to leading his normal life.

Back in the hospital in 2011, my mother-in-law assured me that if my husband grieved differently than I did, that was ok. “You don’t have to talk to him about it to find relief,” she said. “You can talk to others. Men don’t like to talk.”

But I never found anyone to talk to. I kept going and did what had to be done to get through each day. We had countless appointments, therapies, school, my own research and my own activities.

I was in a state of adaptation and acceptance. I didn’t realize that I had grief I needed to process.

I was driving my son to his specialized school this past winter and stopped en route for a sandwich. While waiting in line, my son was restless and active, as he usually is, drumming his hands on the sandwich counter and squealing loudly as he enjoyed watching the ceiling fans spin. People looked at us. I implemented my usual distraction techniques to keep his behaviour under control: “Look! Now the lady is making Mama’s sandwich. Oh, look! She’s putting it in the oven!”

When it was my turn to pay, I said “autism” as I pointed down to my son. The middle-aged woman of a Southeast Asian culture gave me a look of sympathy and said with her accent, “I know. I could see”…pause… “I’m sorry.” Fighting back the tears, I responded with a thank you, paid, and led Lucas to the car, where I let the tears drip down my face.

By the next week I had signed myself up for family counselling at Holland Bloorview through the Brain Injury Rehab Unit where we had spent three months of our lives. Family therapist Caron Gan helped me realize that for the first time, post-hospitalization, I had had my feelings validated—by this woman at the sandwich shop. 

I’ve read many accounts of parenting following trauma and it seems to be a common theme that while family and friends are well-meaning and supportive after a tragic event in a child’s life, most want to focus on the positive. They’re unable to just cry along with us. Our society is uncomfortable with tears. I had many upbeat pep talks from people who gave us a ton of encouragement after my son’s injury. And those who focused on the negative focused on “why” this had happened. Why?

People expressed their feelings about what happened to us, but not mine.  This woman in the sandwich shop simply connected with me, a stranger, and validated my reality.

Suddenly it all made sense: why I was completely unable to drop my crying son off at school and leave; why I accompanied him to school until February with only practice “trips to the store” so he could adapt to school without me; why I caved into Lucas’ wants at my own expense, and, ironically, his, unable to set boundaries when he screamed at the door while I showered every morning.

Caron explained that it’s common for parents of survivors of brain injuries and severe illnesses to be over-protective with their recovering children. After all, we are desperate to prevent them from suffering more.

But my hyper-vigilance about Lucas had distracted me from my own feelings of grief about what had happened.

Last year I heard former Canadian Olympian Silken Laumann speak at a BLOOM night about her experience parenting her stepdaughter with autism. I recently had the opportunity to speak with Silken again. She told me that nothing I feel is wrong. I may have intense sadness that this happened to my son or I may be angry and jealous when I see families out and about enjoying activities that we can no longer participate in due to our son’s autism. I may feel guilty that our son’s outcome and prognosis is so positive compared with other families who have suffered similar injuries, or grateful for having our beautiful son still vibrant and with us. These are all simply honest feelings, and they are all okay.

I had just returned home from my first session with Caron, the family therapist, when I opened my email and read this blog by Tali Berman, a developmental play expert: Redefining the meaning of ‘mother warrior!’.

Tali, who works with families of children with autism, suggests that being a warrior mom doesn't mean stuffing your feelings down. “Are parents living their lives with this niggling feeling that it is not okay to stop, fall apart sometimes, cry about the worry/stress/fear and overwhelm?” she writes. “That is what I want to offer to you today. The permission to be with it, to cry, crumble... release.” The timing couldn’t have been more appropriate.

I am a mother warrior! Hear me roar! (And cry!)

As it turns out, our son’s EEG was normal this time. He can be weaned off of his anti-seizure medication at last. Hear an exuberant sigh of relief! We drove home and by now, late morning, the sun had come out. The healing begins.

Caron informed me that my crying during the EEG was anticipatory grieving and I got something else I wanted at the EEG that day. Before the good news about Lucas’s results, I hugged my husband in silence, while crying, and he hugged back. Perhaps my mother-in-law was right.