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.
-Mama Mac
For more blogs by Mama Mac, please click here.
TMR Book
Black TMR T-shirts (Mens)
Black TMR T-Shirt (Ladies)
Alison, I love reading your blogs and I can relate to every word in this one.
When people who don’t live with autism tell me that this is some sort of blessing, I have started replying that all hardships in life are blessings. But in social settings, friends and family don’t usually tell a woman living in an abusive marriage that every punch in the face is an opportunity to deepen her spiritual growth do they? How would people react if someone said at a dinner party that it is a blessing to have a child with an incurable degenerative disease? If you say those things socially to a battered woman or parent of a dying child, you’d be taken for an insensitive jerk right? I do believe that there is a time and place to broach the spiritual aspect of our circumstances, but it isn’t something to be thrown out socially or on Facebook or e-mail by people who don’t get it. The fact that friends or strangers can say this socially only creates a deeper divide by showing how little they actually know about what we are living. How little they know and how little they want to know.
Thanks for writing this so beautifully.
Utterly poignant.
Reminds me of a recent discussion on one of the autism groups about implementing yet another treatment and finding the time/energy to do so, as I sat there thinking about whether to try it too, would it be helpful, then thought no I can’t do it, it’s too complicated, too much work, it probably won’t help, it’s not fair, why do we have to struggle so hard for everything, it’s too everything and then I noticed you wrote about it: “I must and so I will” and that brief sentence struck me as so powerful and I thought that’s it exactly it, as mothers, we must and so we do. And that’s it.
I try really hard not to imagine how different out lives would be if Nick had not been injured but it still happens. Most of the time I am imagining what ~He~ would and should be doing at this time in his life. I just read an engagement announcement for a girl he started school with, there’s a boy who’s a box boy at the grocery store from that class too. I even recently saw that one young man got arrested. Nick should be in his second year of college now. I can’t even think of going to see the movie Les Misérables because of the song I Dreamed a Dream song. I would start sobbing just in anticipation of it being sung. But we fight on. Never giving up. Someday maybe we will get to that parallel universe.
Well-said. I wrote a blog piece several months back called, “The Alternate Universe”…same general idea as your piece, but you said it much better. I also wonder what my life would be like if I weren’t constantly searching for information about all aspects of autism.
Alison, You have painted in words a perfect portrait of what it is like to have a child “taken” from you, and also the processes we must adapt, emotions we have been through and lessons we have learned. Thank you for your wisdom and your voice. We are blessed because of your ability to speak for us.
So touching and beautiful. It was like you were writing about my life.
Katie are you from EQ?
Probably my favorite blog of yours to date….. every line is so painfully true. Thanks for writing it!
I wish that there were some way I could help you….
{{{{Hugs}}}}. (But I know they’re not enough.)
Thank you for not pretending that everything is perfect while living with autism. Yes we are allowed to dream of “what if” and live with, deal with, make the best of “what is.” I’m sick of people pretending that it doesn’t suck, that it isn’t unfair and it doesn’t kill you a little bit each day while you watch your child suffer, when they try to do simple things most children have mastered years younger. I’m part of a club I never wanted to join, hell I still wish I wasn’t a part of it, but nothing changes the fact that this IS a club filled with amazing determined, companionate people who just like me are doing the best they can in an unfair cruel world.
Alison, this is brilliant. And we all should think of the life that might have been. I know I wouldn’t spend hours on the computer everyday.
“Where’s mom? Mom’s on the computer” are the most often heard words in this house.
We wouldn’t be so far-sighted watching what the CDC, the AAP, or Paul Offit is saying about autism/vaccines. We wouldn’t be looking at the latest dead-end autism/genes study. And we wouldn’t spend so much time worried about what will be there for our children when we are too old to care for them.
In the near-sighted world all around us women focus on things like going to work, shopping, cleaning, cooking, making plans for vacation and putting money into savings. Lots of local stuff. Those are so marginalized in my world.
I realized one day that I have more friends far away than I do locally. I spend more time talking on the phone, skyping, and emailing than I do going out for coffee or talking to face to face. My only long term goal right now is A-1 in Chicago in May—where I can get together with lots of other like-minded parents whom I can hug and smile at, knowing that they know what my life is like.
Autism consumes my life. I’m that only woman I know who has her 26 year old son with her when she visits friends. I’m oblivious to current events, other than those about autism. I only care what politicians are doing about autism. I scan Google news each day to see stories about autism, autism/vaccines. The first thing I do each day is check the stories on Age of Autism. It’s hard to describe the huge chunk of my life that is AUTISM. I have to do everything so fast because I have to work my autism life in with my regular mom life with all its demands.
Every Christmas, when we get all those family news letters, I carefully put them all in a stack, unread, and then throw them away. I really don’t want to hear about all the friends and relatives’ kids who are John’s age and finishing grad school, traveling, getting jobs and getting married. I try not to think about what John would be doing if he weren’t autistic. When he was little, I used to imagine what I’d put in a Christmas newsletter.
“My idea of successes back then was getting my son to go to the door when there was a stranger there, to go into the supermarket with me, to raise his hand in class. That’s hardly worth writing about—but they were my wonderful small miracles.
It’s hard for outsiders to understand what autism does to moms. Maybe that’s why autism moms are immediate friends and need so few words.
Anne
Anne
My son is only 6 so I still open the Christmas cards but it still hurts to hear all about how life should be and I bet there will come a day when I stop opening them too. I hate how conflicted I feel when I hear about how brilliant my NT nephews are. I’m proud of them and happy to hear they are doing well but I’m also so envious that my arrogant brother has it so easy and does not have a clue about the burden I carry.
Jennean
Though you and I may disagree about what the cause of autism is, and how we see autism manifest in our children, I know what you feel. Sometimes it hits us in the gut (or groin) to see through others ‘what could have been’. Thank you for sharing your story - autism, and how we parents feel about it, is so controversial these days.
I hate hate hate people pointing out the blessings of Autism to me or complementing me on my strength or asking me how I do it. YES I know the blessings are there, I’m no stronger than any other parent going through this with their child/ren. Lastly, I do it because I have to. Any “good” parent would. That’s what we do, I’m not alone in what I do and some parents have so much more going on with their kiddos that although I have some of the same fears for his future like, higher ed. and marriage, I feel overly blessed, guilty even for his present state and his rate of recovery. It’s not that I can’t take a compliment, it’s just hard to swallow from someone who doesn’t understand exactly what I’m going through. My NT daughter, LaRie, had already made me a better person, she truly enlightened my soul. My LoRenzo made me a THINKER and if I’m honest, then no, I’m not really always happy about that especially when the people who compliment my parenting, strength, and soul ignore or scoff at the info that I share. BUT we have saved two infants from any vaccines and my sister-in-law just asked me for help to get exemptions from any further vaxing of my 5 mo old niece. It’s easier to take compliments from them, because I believe them, because they believe us! So, thanx…for being a Thinking Mom and recruiting me because I’m sure you already know your blessings, your strength, and your soul! <3
navel-gazing - I learned a new expression today
Outstanding!
Beautifully said Mamma Mac!
Love it. I often wonder what my life would have been without autism. Oh, the places we would go and the things we would do. Then I think of all the amazing people I have met and all the things I have learned because of autism. Then I look at my beautiful vaccine injured boy and wish I had a time machine to go back with today’s knowledge and take a different path. To ask more questions and say NO more often. My heart is heavy after reading this but loved the chuckle at the end. I can definitely see the coffee on the roof thing. Fantastic piece!
Really beautifully written <3 All so true- right up to the last line, ” These are the thoughts that distract me as I pull out of the parking lot with my coffee on the roof of my car” that has me howling with laughter. Yup. So true!
Well said Mama Mac, and beautifully written. Bravo!
Awesome! I was getting a little misty-eyed toward the end, because it all rang so true to me…. then giggled at the coffee on rough of car! That was good! Lol! Thank you!
Oh Alison … so very very similar to my thoughts/feelings … Just incredible how you’ve captured what we experience as parent’s of vaccine injured children. So well written. I found myself with the chills toward the end of reading it, and I am still feeling those chills right now as I type this comment. No kidding. Excellent. Thank you for sharing the depths of emotion that has become the daily reality of so many of us.
Ditto. And I mean that word with all the meaning in the world.
Well Said.
Also, true.
I failed to mention that I loved it. Very real. Like you know my innermost thoughts. BTW, I have been up all night again, so I am a little less than coherent. I am a big fan.
I could have written this with the exception of having another child with great compassion. That is the other thing this illness has robbed me of.