Thursday, April 17, 2014

I am warrior mom: Hear me cry and roar

By D. Christine Brown
It was the morning of our son Lucas’s 10th 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.


Hugs to you. Glad the EEG is normal, hope that the ride is smoother in the future.

Do, however, please understand when you get comments from those around you, the positive ones, the negative ones, the ones that bug you, that just as certain comments make YOU feel better the same exact thing can rub another parent with a similar situation the wrong way. To say "I'm sorry" the way that woman did to you, could get some warrior mother outraged and furious. "Sorry", about WHAT?", one mom I know would. "Nothing to be sorry about". So even a simple "sorry" can hit a someone the wrong way I've seen contradictory lists on what to say and not to say on the same things at times by different people.

Thank you so much for sharing your feelings.
My son was diagnosed with CP 4 weeks ago and I don't really know how to describe my feelings yet. Reading your story gave me some comfort. I always look at the bright side of life - it's always being that way, but sometimes now I feel like letting my hurt and pain take over. Sometimes I just feel like crying... I guess is part of my own healing process while I try to gain strength to raise my boys with limitless possibilities.

Hi Catherine,

It's funny - I discussed this with my initial reaction cognitively was "wow, she's judging my situation to be undesirable" but my emotion overtook me. I told Louise other blog posts have mentioned just what you said --that it being presumptuous would be offensive to some mothers. I hear you...

Hi Fabiana,
Call me D. I feel for you. It has been a 2-year journey for me to accept this setback in our lives. Everyone is different. I would just suggest reading as many archived BLOOM blog posts and issues as you can. I found reading what other parents of children with special needs go through more helpful than anything else. Also, with every setback comes rewards and you will find yours. For me it's been a juggling of finding the bright side with the sorrow of acceptance and adaptation. I wish you all the best in your journey and thank you for your comments.

With regard to warrior moms who would automatically rebuke someone for saying they are sorry -- I think that's really unfortunate. Most people have no clue what it is like to be the parent of a child with a severe disability and so they remain silent for fear that they say the wrong thing. So those people who DO go out on a limb and try to connect with you, and do so out of a place of kindness and compassion, shouldn't be rebuked. If what they say is offensive but is said with good intention, I would take that opportunity to correct them in a way that wouldn't make them afraid to ever speak to a child (or a parent) with a disability again. After 20 years I have had some incredibly stupid things said to me but in 90 per cent of the cases they were said out of ignorance and not mean spiritedness.

I too have a son with an ABI which he acquired at the age of 10, he's now 20 (turning 21 in May)I continue to grieve at times when I see other boys his age progressing to a different level, I've learned taht I need to accept my feelings, cry when I need to cry, laugh when I need to laugh. it's ok to cry. I to received some rediculous advice, comments and stares from people over the years, I've come to realize that you can't expect someone to understand something they know nothing about, I also believe that the comments and stares are not meant to be malicious they just don't understand.
the best advice I ever received after my son acquired his brain injury is:
"You need to take care of yourself so you can take care of your son." do something for yourself, go for a coffee, call a friend, take a walk or read a book that makes you smile.
and always remember,
it's ok to cry :)

Hi Joan,

Anger often masks sadness and if the response is anger, I'd suspect the parents still have some sadness to process. It's natural to build up defenses around feeling vulnerable about things we cannot control and to push away the feelings of sadness, covering them with anger. As developmental & clinical psychologist Gordon Neufeld so eloquently explains, until you have those tears about that which you cannot change, you cannot really adapt and move forward. Secondly, I really agree with your "educate them" point. I think about before this happened to my son. How many awkward interactions did I have with people when I didn't know what to say? A boy I used to work for with cerebral palsy typed to me one day "once you've known a person with disabilities, you feel more comfortable around people with disabilities because you understand more". It's the truth. And of course we don't want to push away people who do care and want to connect with us, but don't know how--but we have to define our own limits of what we can handle.

Hello Jennifer,
I've heard that advice so many times too and I am probably still not listening to it enough...I'm so full of energy, I'm lucky to still be running full tilt. But at some point, I will need to just relax and breathe! Perhaps when my son is a bit older I will learn how to do this as he learns himself, the little ball of energy. I also think we create in our heads our own sadness by focusing on things like comparing our situations to others and Louise has written about this before. We really have a great life here in Canada with great resources available to us even if it's not perfect. We all can find meaning in our own unique journeys, and we all have things to cry about, no matter what our situation. Thank you for your comments.

A very true story I liked the way you told your feelings I wish your son nothing but the best ♥ I would just say its best to talk to your husband as much as possible hopefully he can open up about your son.... Make sure to go on dates talk & pray as much as possible ifyou believe in prayer... Connection is the best way to work through special needs parent hood ....

I love how you write your story. I am sad to hear that another child has to endure EEGs they are scary and never fun unless of course you get those amazing child life people. my daughter and I both have a rare genetic disorder called 22q deletion syndrome vcfs and digeorge syndrome.
It's great to get to know you

I was born and raised in Toronto I didn't realize this was a Toronto based blog. wow even more glad I came across this article.