By Cathy Jameson
Hush, now. It’s okay. Close your eyes. Sleep. Shhhhh, she whispers. Shhhh….
A young mom is quietly lulling her toddler to sleep. They are sitting in the pew in front of me at Church. She holds him gently in her arms while stroking his hair. At the end of the pew is the woman’s husband. He is handsome, relaxed and proud of his family. He glances over at his wife, reaches for and touches her shoulder. On either side of the young mother are the toddler’s older siblings. Ages 7, 5 and 2, this family’s children appear healthy, happy and typical. Subconsciously, I smile. I think about how perfect they look and how lucky they are.
I see families like this one often. Normal moms. Typical kids. Regular dads. I walk past them at the grocery store, in parking lots and around our community. I take in the ease of their movements and the liveliness of their conversations. As I watch and listen to them, I long to experience what I think they have—freedom.
Do they see what I see?
Do they appreciate what they have?
Do they realize how fortunate they are?
They are free of seizures, of wandering and having to draft IEP goals. They are not ruled by weekly therapy appointments, on-going doctor visits and support groups. Their schedule is theirs to create as they wish. I know I’m just a stranger looking in, and I realize that I see only a fraction of their day, but as an outside looking in, I can tell that their life is very different than the one I live.
Normal moms. Typical kids. Regular dads. I used to be that person, living like those people and participating in their lifestyle. I don’t run in their circles now, and they rarely step into mine.
Years of managing my son’s vaccine-injury and the medical issues that came with it has done a number on me. On days when Ronan’s health takes a turn for the worse, not only does he tank, but I do too. I’m no longer the relaxed mom who thinks she can take everything in stride. I panic. I mentally run away. I become hyper-vigilant, overstressed and sometimes a tad judgmental.
I think back to when this all started. I want to curse my foolishness and the choices I made. I close my eyes remembering the past and can’t help but wonder how different life would be if what happened to Ronan really didn’t happen. Some days I even wish that this wasn’t happening. Pretending that things would magically return to what I considered normal won’t help. That’s when things can go from bad to worse.
On those very tough days, my thoughts become clouded and my hopes are crushed. It’s hard to be hopeful when my child’s life is documented in a case file, in multiple case files actually. Lots of people would agree that it’s better to have a positive attitude. But with all that I have had to overcome, and with how children are still being vaccine injured like Ronan was, my heart isn’t always in the right place. And sometimes it stays somewhat hardened. I feel it harden more in certain situations.
As much as I try to not let it affect me, my heart hardens when I learn that typical moms choose to follow the same steps I took that I wish I’d never taken.
It hardens when I hear that parents let someone else dictate a decision that is not that someone else’s to decide.
It hardens when professionals arrogantly use their credentials against parents instead of respecting and calmly listening parents’ concerns.
As much as I have no say in the lives of others, I judge them. I let it get to me. I feel that unnecessary and unkind judgment oozing out of me. Can they see it? Do they know why my brow is furrowed? Can they tell that I am criticizing them, their choices and their actions?
I judge the parent who knows to question but doesn’t.
I judge the parent who can walk away but won’t.
I judge the hasty decisions they think they have to make.
I judge the doctor who follows standard protocol but knows he doesn’t have to.
I judge the establishment that cares less about the rest of us.
I judge people I shouldn’t.
I judge their situations even though I have no right to.
I judge because I made a decision in my past that will forever haunt my future.
But as quickly as I judge, I hang my head in shame.
Who am I to judge?
Who am I to judge!
With how jaded and judgmental I’ve become, who’d want to ever be my friend? Who’d want to come to me for advice? Who’d want to offer me any help either?
Who am I? Why do I do this? What have I done? Who will it ever help?
Who have I become?!
I am Cathy. I was a normal mom with a typical kid creating a family with someone who was a regular dad. I am no longer a normal mom with a typical kid married to a regular dad. That all changed. It changed when I become Mom to a boy named Ronan. Ronan, a vaccine-injured child whose typical childhood is now but a memory. Normal flew out the window when he got sick and all manner of medical issues took its place. I see that. I know that. And I would never wish that upon anyone. So when someone willingly walks the path I so desperately wish I could’ve avoided, I become discouraged. And judgmental.
I judge those who believed that they will walk away unscathed but didn’t. I judge because they are now in the same position as I am with their own vaccine-injured child. Why, when they knew it was a possibility?
I judge because I know that if I was ever given the chance to change the course of events that have happened since Ronan’s vaccine injury, I would absolutely do things differently. Why, when some of them know that there are other options?
I judge past decisions that I have made. I judge poor choices and kneejerk reactions. I judge the perpetual domino effect it’s had on my family. I judge myself harshly. I question myself, too. And I frequently, no, constantly, doubt my abilities. I do it to myself when life gets frustrating. I do it on days that I shouldn’t. Why, when I know that it’s not healthy, it’s not necessary? Believe me, I know. I know that this is no way to live.
Back in Church…
I watch the toddler’s eyes become heavy. His body relaxes. His chest rises and falls. His mother softly kisses his forehead, and he falls into a deep sleep. I stare at his face, his skin, his body. He is typical, peaceful, beautiful. And perfect.
I glance at the children I’ve brought to Church with me—two daughters. They sit on either side of me. They sit as close to me as they can, their small hands holding tightly to mine. I look to the left and to the right of my girls toward the strangers sitting in our pew. My husband is not with us. Ronan isn’t either. We’re at a point that Ronan isn’t tolerating Mass again. There are too many sights and sounds for him to handle. The long-lasting effects of vaccine injury pierce my thoughts, my hopes and my heart. There is too much quiet sitting and listening for Ronan to do at Church. He isn’t capable, and to ask him to join us leads to unfortunate disaster.
Before Mass begins, I gather my thoughts. I peek once more at the young family in front of me. I know them. I know the children. I have spoken to their mother. They are a good and happy family. I could be jealous. I could be judgmental. Surprisingly, I find myself feeling grateful.
I am grateful that they do not know the pain I know.
I am grateful that they do not struggle like our family sometimes does.
I am grateful that their children are typical, and happy and perfect in my eyes.
A feeling of hope comes over me, and I bow my head to pray…
God bless our children who’ve been harmed and whose lives have been altered by man’s greed. And bless those who’ve step forward to help them.
God bless parents who feel lost and alone. And bless those who offer them unconditional support.
God bless those whose hearts are hardened. Help them to find a sense of inner peace once more.
And God please forgive me for judging. And give me strength to continue on this journey.
Cathy Jameson is a Contributing Editor for Age of Autism.