Sometimes I catch myself thinking about what my life would look like if Nick hadn’t been injured, hadn’t gotten sick. I imagine there is another me, in a parallel universe, who lives my life minus the Autism. My day gets hijacked by these thoughts when I’m confronted with a family like ours, only without the vaccine-injured child, who gets to do the things I thought we might do. For instance, when I run into a friend in the grocery store and they tell me about their upcoming ski trip. After we part, as I shop through the aisles, I’ll have a conversation going in my head: “Why don’t we do ski trips? Neely would love to learn how to ski? Could Nick handle a trip like that? Where do people find the money for this kind of stuff? Oh, right, they aren’t paying for Autism. I hate that we aren’t going away AGAIN this February. Not fair. OK. Back to earth, we are out of Sunbutter bars.”
What would we be doing if Nick hadn’t gotten sick? What is this version of me like in a parallel universe? Without the humbling personal growth that’s come from Autism, is parallel Alison soulful or is she tedious and caught up worrying about meaningless stuff? Maybe something else awful came along in her life — after all, vaccine injury isn’t the only awful thing that happens to people by a long stretch. Parallel Alison could have Breast Cancer or she could be an Alcoholic? Parallel Alison’s husband could have left her for the HR woman he walks with at lunch?
Of course the fantasy is that my parallel-universe family is living everything that I imagined and hoped for before Autism hit. We would have bought that old Victorian house. I would be working enough to contribute meaningfully to our finances and to feel a sense of accomplishment about my therapy career. My kids would be centered, happy, thriving. My marriage would be strong and vibrant. My husband’s career would advance and so would our financial security. We would actually have a retirement account. I, in my imagination, look fit and fabulous.
As I wander the aisles of the grocery store, I’m haunted by these thoughts. The unfairness of it all is what I get so hung up on. Parallel-universe Alison definitely is not driving a ten year old station wagon, or living in a one bathroom condo, or wearing clothes from forever ago. She probably doesn’t wince at the sight of the heating bill or spend every school vacation at home with the kids. So, is that what it all comes down to? Money? No, there is the hugely sad recognition of what Nick has been through –utter hell. His suffering is the greatest unfairness of all, plus the future opportunities he may not be able to take part in such as higher education, work or marriage. These thoughts are so devastating I try hard not to think about them too much because it just kills me. The emotional trauma my whole family has been through separates us from our parallel family: the stress and worry Nick’s sister harbors as a result of his vaccine injury, the pain behind my husband’s eyes that he could not protect his son, and the depression that I cannot seem to shake. Our lives were shoved into Autism by poor medical decisions that were made for Nick and there is no trading places with our ‘Autism-free, parallel-universe perfect family’ even if I wanted to.
As I push my cart through the store, I wonder what kind of wisdom this carefree parallel Alison would offer me? I’m surprised to realize I don’t think she has much to offer. She hasn’t been through much. I am the one who has done all the learning. Not just me, but my whole family. I read a great Huffington Post blog by a mom a few years ago responding to the feedback from non-Autism parents that her daughter, a sibling to an Autistic brother, was becoming such a compassionate person because of her brother. This writer argued that her daughter would have been terrific without the experience of her brother’s vaccine injury and I wholeheartedly agree with that for Nick’s sister, Neely. I also can’t stand it when people who aren’t living with Autism point out the blessings in my situation. Yet, I also believe these harrowing circumstances are creating a phenomenal group of empathic and politically-active young adults who see just how high the stakes are. When I was 12, my daughter’s age, I had lived such a cloistered and narrow existence, I was afraid of people with disabilities. I felt awkward and shy around them. My daughter is growing up knowing a lot of people with various differences and capabilities. She is learning at an early age the value of reaching across these challenges to connect with each other. Sure, my daughter cringes in the school pick-up line when she climbs into our old car, but we are teaching her such valuable lessons about materialism: your car is not a representation of your character, money must be prioritized, and you can’t have every ‘thing’ that you want.
In my Autism marriage, the teamwork my husband and I have created is stellar. There is no time for a mid-life crisis in our household, no navel-gazing, and no use wondering, “Am I happy?” I wonder if the trauma of Autism and the shared goal of healing Nick has given my husband and me a glue in our marriage that otherwise wouldn’t be there? It’s hard to know. I do know that we have a deep respect for each other borne from watching how hard the other is working. There is no mancave for Dave, his golf clubs grow dusty, and the dvd I bought him for his birthday two months ago sits unopened. But he has logged miles of train time with Nick over these last two months and I love him so much for that.
Nick is strong. He is a fighter. He works harder than any of us and does this while managing gut pain and while sustaining compassion for a world that has been so unfair to him.
As I load my groceries into my car I ask myself, “Who am I now? What do I know that I didn’t before Autism?” I am focused. I am part of an army of parents seeking healing and justice for their children. I am part of a movement that will change health policy and pediatric care for children, and I am fiercely proud of the way my small family has risen up to meet the challenge of vaccine injury. These are the thoughts that distract me as I pull out of the parking lot with my coffee on the roof of my car.
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