By Mari-Anne Kehler
My life is not a war. My son’s life is not a battleground.
Please don’t call me a “warrior mom”.
At the risk of offending my fellow autism moms, I must confess I cringe whenever anyone refers to me as a warrior mom. I know it’s meant as a badge of honor. Truly I do know that. It’s intended as a complement, alluding to the challenging job we have raising loved ones who are sometimes/often spinning off what we like to think of as planet “normal”. We are usually the ones hanging by our fingertips while clinging to keep our families, jobs, friendships and sanity together. And we do this while displaying our humor, intelligence, grace and rugged tenacity.
But the truth is: we are just human. We are most often lonely, tired, scared, worried humans who are simply doing the very best we can on any given day. And usually that “best” never feels enough. It’s impossible to live up to a standard we set to do-the-impossible. Most days I feel good if I’ve only forgotten to do a few things, haven’t pissed off too many people, and can go to bed at night thinking “Well, nobody died.”
“Warriors” are defined as “a person engaged in, experienced in, or devoted to war”.
I’m none of those things. I’m not engaged nor experienced in nor devoted to war. My life is not a war. My son’s life is not a battleground. Liam was born beautiful. Sincerely, extra beautiful. Strangers would stop us on the streets of New York and comment on his beauty. Blond, blue-eyed, chubby and deliciously cuddly. He was supposed to be easy to raise. I was a hippie mom. No stroller for me! I’ll carry him everywhere. We’ll travel easily! We’ll take life as it comes as a family! But almost immediately after his birth it was evident we were in for a different ride. His constant meltdowns got better by first grade, but then far worse — resulting in years of seizures, self injury, and constant escape attempts that were dangerous and exhausting. Our family life shrunk to the size of our small home — complete with special locks on all the windows and doors. Far from warriors, we were more like prisoners in a life we never imagined.
Eventually things got much better after years of struggle, specialists, spiritual grappling and as many mistakes as successes. Today Liam is a fun and responsible adult with many friends, passions, interests and hobbies. He will need lifelong care. And we’re confident he’ll have a pretty darn good life. But we didn’t fight to get here. We crawled. We risked the loss of our marriage, the loss of jobs and professions and opportunities, the loss of friendships and relationships that didn’t fit into our odd, unpredictable and sometimes unpleasant lifestyle. It’s not always fun to be with us. Hell, it’s often not fun to BE us. And then again, much of the time we are laughing. Hard. And loud. Our lives are less battle-of-the-warriors and more a black comedy jam. We see the absurd humor in our day to day attempts to get by.
If I imply life is a war, and raising Liam is a battle, I’m also saying we are more or less than a family, that he is more or less than a human, and I am more or less than a parent. And I’m not willing to say that. We are no better or worse than any other family seeking to create a loving home to raise the child we have, not the one we dreamed about. No family gets that kid. That kid doesn’t exist. That’s why it’s called a dream. We get to raise the child we were given, and our only job is to love him or her with all our hearts, enough to let them be who they really are. The best of who they really are, but who THEY are nonetheless. Not our imagined dream of who they were “supposed” to be. That is the fantasy. That creates the internal “war” that makes us think we need to be a “warrior”. That somehow we got ripped off, someone stole that imaginary child and replaced him/her with this substitute. Imagine being that child and being raised with the idea that you’re somehow a mistake! Whether stated or not, that message will come through: “You aren’t good enough. And I’m gonna wage war to get the real YOU back.”
Perhaps we are supposed to be warriors fighting all the forces who are supposedly keeping our child from their rightful services or programs or whatever. I prefer collaboration and creating alliances. They have always worked much better when we’ve sought to help Liam with schools, therapies and doctors. When we did fight or try to go to battle, the outcomes were rarely as good. Don’t get me wrong though, I’m a force to be reckoned with. But I try to be a force for good. When I am, I’m on the side of angels, and Liam is usually the better for it.
But “Warrior” sounds a lot sexier than “Collaborator”. It’s tempting to accept a title like “Warrior Mom” to compensate for the disappointments and fatigue. It would be juicy to swap my real story for a glamorous fable with a happy ending. But I don’t believe in happy endings. I only believe in happy moments. Because frankly, the journey is never ending. After the hardest years, even the simple pleasures can feel fantastic. We ate at a restaurant and no one stared at us in disgust or annoyance for all the loud sounds we make! We can’t find Liam’s favorite DVD and he didn’t trash the room! We got Liam on the bus to school and ourselves off to work on time with no incidents! These don’t feel like battles won. They feel like the heavy exhaled sighs of relief. They feel like real life. And I’ll take that over war any day.
And as days turn into years, the kid we thought was lost is the man who makes us laugh with delight, our hearts burst with pride and challenges us to be the best we can be too. Not super human warriors. Just simply our best “us”.
Courtesy of Laura Shumaker. This was originally posted here.
Mari-Anne Kehler is Chief Marketing and Strategy Officer at the business firm Green Hasson Janks and co-authored the Amazon bestseller Putting the Profit in Nonprofit. Mari-Anne provides consultation to nonprofits in the areas of operational and strategic success. She has been active in the community in the areas of disability awareness and fundraising and in mentoring families and professionals for almost two decades. Her specialty is creating successful transition strategies to optimize the special needs transition to adulthood.
Mari-Anne is also the director of FRED, the preeminent international conference that brings parents and professionals together to advance opportunities for adults with special needs to find homes and employment and live with purpose. She has been a featured speaker at schools, colleges and conferences on the topic of disabilities: awareness, transition to adulthood and the impact on families.
(I attended FRED last year and wrote this blog).