Some time ago we received the worst kind of phone call anyone can get. My niece’s 13 month old son had died suddenly and inexplicably. Autopsy results were inconclusive so the ensuing “cause of death” was labeled SIDS. The problem was that no one in the family could believe there was not a valid reason for why this precious baby died, especially when it seemed to coincide with some general ill health the baby had been experiencing for two months prior.
My job as aunt kicked in as I quickly went to the family with armloads of finger foods and a willingness to step in wherever needed. Part of that task involved taking my niece to the funeral home to drop off clothes to be used for the baby’s viewing. Watching my niece stoically drop off the clothes and get back into the car with a burdened heart was impossibly mind numbing. Yet something about all of this triggered a distant memory that I had long suppressed—for good reason. You see, I had chosen to forget what it felt like to be a mother cascading in a waterfall of despair because of my own sense of helplessness. My niece’s grief became that reminder that nothing is ever forgotten, just re-framed in perspective.
My son Daniel was diagnosed with autism at the age of 18 months, and while I never lost him to death (thank God) there was a part of Daniel’s future, mired with our ever-growing concern for his physical well-being, that led to a “death” of the childhood imagined for him. This set off a cycle of grief in me, culminating into two trips to the hospital for stress-related heart condition. In the grief cycle, as I came to understand it in relation to those who have a child with autism, there is a stage of overwhelming guilt that accompanies every decision made or not made on behalf of your child. It is a guilt like no other because the round-robin thoughts of “woulda, coulda, shoulda” become relentless, challenging what’s left of the vestiges of our ability to cope. As a mother, I think it’s worse because there is a nurturing element in us that declares that our child’s health and well-being are entirely up to us, in spite of a very caring and competent father in the picture. At least this is what guilt during grief did to me.
So when my niece said “Aunt Mary, something was wrong with Joshua. I keep thinking that I did something wrong,” there was a type of cell memory that exposed the raw nerve still lingering from my trip down the path of guilt. The first reaction was to assure her that she did nothing wrong and she was a terrific mother. Heading down the path of relentless guilt will not lead anywhere but to despair, I repeated to her as almost to myself. Please, please don’t linger here. Of course, I cannot determine her thoughts or even guide her in a different direction because grief takes its own course.
As I left my niece and family that day I gave her a hug full of the desire to instill some element of courage for the days that lay ahead. The grief she will endure will be endless, while mine abated over time. As I drove away heading for home I called my husband, finally giving way to the tears that had been creeping in all day. I cried copiously without regard that my tears were straining my view of the road. All I could think about was what I saw in the face of my niece…emptiness.
Over the next few days the mind-body connection to the triggered memories gave way to some very real physical reactions. I felt the grief invade my body, similarly to how I felt before landing in the hospital years earlier. Four days after the memorial service I had some routine scheduled blood work done, which led to a phone call from the doctor’s office letting me know that some minor issues showed up in the lab results. It probably should not have been a surprise at how quickly the grief was showing up in my body, but it still came as a shock to see how much my lab results reflected my broken heart. The cardio-reactive protein test was extremely elevated, as were all inflammation markers in the testing. The doctor made some recommendations, but the underlying message was to find a way to alleviate the stress. The problem was that I was once again helpless and knew that grief had to take its course. Mentally I was fine, but physically I was not.
As I write this I feel like I am on the other side of the dark tunnel, focused on every day activities with the family. My niece is taking every day one day at a time, trying to form a new identity and meaning. She has a strong support system around her but there are still days when none of that matters and she just wants to be a mother to her son again.
When my son eventually recovered from autism (yes, this is possible for kids with autism) I never underestimated the value of the gift we received. But somewhere in the gratitude I had buried the heartache that came with the diagnosis. When it resurfaced I wondered if I was meant to learn a new lesson, one which to pass along to the next parent in some form or fashion. So far the lesson seems to be that the lesson is ongoing even when the heartache is gone.
Mary Romaniec is a reporter and recognized authority and speaker on the subject of autism. Her own son’s recovery from autism by the age of 4 has inspired her to take on the role of mentor, writer and speaker. In addition to mentoring hundreds of families around the U.S. and the world she authored the 10 week GFCF diet calendar, which is in wide use in the autism community on various websites and quoted as a valuable tool in Jenny McCarthy’s book, Louder than Words. She has also written other articles on the topics of IEP negotiation, marriage topics and care for the caregiver. Her articles have appeared in Mothering Magazine, Autism/Asperger Digest, Autism Today and Journeys Magazine, Age of Autism, The Autism File, as well as other autism-related websites.
Her book Victory Over Autism, takes the reader through the personal stages parents will experience when their child is first diagnosed with autism; and how to use these stages to catapult to becoming part of the next generation of proactive parents who are making a difference in the well-being of their child and family.