I want a different set of memories with my son. I was cheated. What to Expect When You are Expecting or the What to Expect the First Year books, the fairy tales of happily ever after stories, and the television sitcoms I watched as my role models promised me something different. The worst thing I could conjure after reading and watching was colic and sleep deprivation.
I know everyone has a different birth story, but most end up with the baby in his mother’s arms. Maybe not immediately, but soon thereafter. That wasn’t the case for me. I didn’t get to hold my baby until day 12 and only for a very few minutes. And he had to have another set of hands with mine to help me hold him with all of his many leads, tubes, and oxygen apparatus in place. I wouldn’t get to hold him regularly until day 40.
And then when he could be held, he couldn’t be unheld. He had to be held all the time. He had to sleep on me, had to physically be on me all the time. Taking a shower, running an errand, or taking a short run was torture. Others would try holding him close and tight, but they were not me. So, he screamed at the top of his lungs nonstop and set all of his Apnea monitors off because he couldn’t scream and breathe at the same time. Because he was ripped out of me so early, I think he wanted to crawl back inside of me.
When we were trying to teach him to point at different people in the family: Daddy, Grandma, Grandpa, he couldn’t identify me—ever. And at age 13, he still can’t. I am not mommy, but an extension of him and vice versa.
I oversee the Public Memoir project for the Indiana Writers Center and teach creative narrative nonfiction at both the Center and at a university. I explain the following to writers to help them conjure imagery and scene while they write:
When we remember, when we think back on our memories, our life, we may see those memories like a series of snapshots or individual photographs. They may be a series of photographs, like we are sifting through a pile of images in a shoebox or flipping through an organized album. Or, we may see those memories like a movie that plays briefly like something posted to Youtube or as a full-length movie. And most of us don’t see everything clearly. Sometimes we are missing images or scenes. As we watch, we may forget and for moments become ourselves as were then or continue to view ourselves from the perspective of where we stand now as a keen observer who saw it as it was.
When I examine my memories, they aren’t organized. They are strewn everywhere. In the three different houses we have lived since Will’s conception, the four hospitals and more therapy and rehab clinics than I can count in multiple cities, the many rooms we have had to place Will in to accommodate all of his different rehabilitations or equipment post surgery, and only two family vacations.
There are images of people— some whose names I can remember and some whose names, I can not, countless nurses, doctors, therapists, surgeons, hospital pastoral care, intake coordinators and case managers for the many different agencies that help oversee insurance and Medicaid funding, teachers, instructional assistants, special education directors, family and friends who have checked in and out because they want to or don’t want to help, and other parents in waiting rooms that I may or may not ever see again.
If I zoom in on those photographs, I can see the countless hospital beds, IV poles, feeding station units, oxygen masks, thousands of syringes, bottles and bottles of medications, orthopedic equipment that promises he will walk, sit, stand, or lie with no pain, paperwork that could cover every inch of my house and yard.
And the people are just a blur, one large blur. They are really the same. Even if someone stands out, they only stand out for a brief moment. With good intentions, they too become defeated and fall in line with everyone else. Their faces try to smile, but you see the sad and pity in their eyes. The smile is a façade, to placate the mother. As if I don’t understand the sadness. I live it.
And If I recall their voices, I hear that the same dulled tone. It is sullen, salted with dashes of hope. A boy born dead has little to no hope. The resonating theme of their message is the same too. It’s one of deficits and can’t do’s and be prepared for—fill in the blank here— be prepared for more therapies, infections, surgeries, risks, problems, issues, lack of funding, etc…
I once read a study conducted in academia about photography and parents of special needs children. The authors gave the parents cameras and told them to take as many pictures of their children as they wanted. The images they took were never during times of distress or when the child was in the hospital or therapy and rarely showed the child compromised or with any adaptive equipment. All of the images taken tried to make the child appear as “normal” as possible.
I too have very few photos of our reality. Most of our images are in those rare moments when we aren’t in any of those many spaces listed above or with one of those blurred faces. Do my images accurately reflect my memories with Will? No. They aren’t candid. They are staged.
They are pictures though that I frame, place on the mantel, share on social media, but they aren’t the real memories, but instead the memories I present, the memories I hoped for, wanted, got cheated out of.
And yes, I do have a few pictures of Will in hospital beds hooked up to machinery or of his post surgical scars, but I can’t bring myself to look at them. I don’t want to look at them. Each time we leave the hospital, Will and I are traumatized and the only way we can each survive is to move on. We know there will be another hospital stay, there have been 37. But in order to prepare for the next one, we have to forget about this one.
I am criticized often about my blogs. I have been shunned by my critics, noting that it is unethical for me to write about my son, that I am contributing to the hegemony of seeing people with disabilities or mothers of children with disabilities as less than or weak by writing about the challenges, that I should focus on the positive and the good and use my voice to spread that message instead.
This is exactly why I write about the reality. To create balance. Yes, there is joy, but there are many more challenges. It’s dangerous to only leave behind a few staged photographs and no story and assume that those images are an accurate representation of your reality.
Memoir is about truth after all. And I am a memoirist, not a fiction writer.