An Important Tool That Has Helped Me Heal from Trauma

In the world of medical and disability parenting, sources of trauma abound. There are, of course, the terrible things that can happen to our children—near-death experiences, prolonged hospital stays, dangerous illnesses, emergency surgeries, clusters of seizures, and so on. Then there is our children’s suffering to consider. It is nearly impossible to watch them scream, cry, writhe in pain, beg for help, or hurt themselves without being impacted by their distress. Not to mention the times when our children’s behaviors are the issue. Children with neurological differences, mental anguish, or physical pain can lash out and do things like bite, kick, scratch, punch, pull hair, or threaten violence. And lastly, there is the trauma of watching other children, parents, and families in the disability community go through unspeakable struggles and even lose the battle against their children’s disease. All too often, these moments become imprinted on our brains. Even months or years later, they still have a firm grip on our lives, hearts, and psyches. In this case, temporary stressors have become permanent trauma.

My daughter, JJ, has Rett Syndrome—a rare, progressive genetic disorder. I have watched her disease steal her words, independent mobility, hand use, swallow function and—for one terrible year—her vision. I was there when she began having grand mal seizures, needed emergency brain surgery, and suddenly refused to eat or drink by mouth. Though the seizures were eventually managed by medication, the brain surgery was successful, and a feeding tube saved her life, these things left their mark. So did the early days of her disease when she had screaming, biting meltdowns. To keep her safe, my husband and I restrained her in our arms so long that our muscles ached afterward. Worst of all, there was the day our neurologist called to deliver the results of JJ’s routine genetic screening. As I gripped the sink with sweaty palms, he explained what he called my daughter’s “devastating” disorder and listed the ways her body would begin to fail her over the years to come.

Together, these events and experiences have combined to create my own personal hell. They became stored in my brain and body as trauma.

We tend to throw the word “trauma” around a lot these days, so it is worth examining its clinical definition. Trauma is separate from the event or stressor itself. Instead, it is the emotional response to something we perceive to be frightening, dangerous, or overwhelming. People with trauma can find it easy to become trapped in flashbacks and feel stuck in the past, and they often find it difficult to move forward with their lives. Trauma can stem not only from one acute event (such as a health crisis or natural disaster), but also from a series of events, in which case it is classified as chronic trauma. Chronic trauma is especially common among special needs parents, who often find themselves trapped in cycles made up of their children’s illnesses, surgeries, and pain. Trauma can also be secondary, meaning it does not have to arise from something that happens to you but can come from watching another person go through something frightening or painful.

Every person experiencing trauma has different triggers. For some medical parents, it can be things like the smell of hand sanitizer or the sight of a hospital corridor. My own triggers tend to be sounds. Hearing one of the songs we used to calm JJ during her meltdowns can make my shoulders tense and tears prick my eyes. It only takes one or two of her screams to bring me back to many of our darkest times. Sometimes even the sound of her gagging and retching sparks panic, as I recall the many weeks when a new drug caused her to vomit uncontrollably.

When our brains are in trauma mode, we find it difficult to feel happiness, gratitude, or hope. We relate everything in our lives to our trauma and can feel bitter, angry, or resentful toward other people who haven’t had to go through the same difficult experience. Until recently, this is exactly how I felt. My brain was stuck in the past. When I looked back over the course of my life, the traumatic pieces of the timeline were shaded out. They felt like a black hole, threatening to suck me in.

The story I told myself about my life wasn’t much better. I saw those times as misfortunes, as separating me from other people. While I watched other parents go on vacation, pursue hobbies, and enjoy freedoms I could only dream of, I was swallowed up by bitterness and resentment. The result was a common one when trauma is involved. I began avoiding the people, places, and things that made me feel like this. I isolated myself.

I don’t want to dwell too long on trauma itself in this post. Instead, I want to talk about ways we can escape the past and move toward the future. I have worked on lessening my trauma in several ways. I regularly see a talk therapist who checks in with me, gives me helpful guidance, and provides a sounding board for the different issues that crop up in my life. I also attend and co-lead a monthly support group for mothers of children with disabilities. Together, these mothers and I create a safe space to share our joys, struggles, hopes, and fears. This has gone a long way toward helping me overcome my self-imposed isolation.

However, the best thing I have done to combat my trauma has been to undergo a short stint of EMDR. Eye Movement Desensitization and Reprocessing is a type of therapy that allows people to focus on specific traumatic memories while engaging in bilateral stimulation, such as eye movements. As strange as it sounds, side-to-side rapid eye movement (usually achieved with an electronic light bar), allows the brain to reprocess and store traumatic memories in a healthier way. Though no one is completely sure why it works, many psychologists think EMDR mimics the natural memory processing that occurs during REM sleep. As it reprocesses traumatic memories, the brain makes new connections and slots them into place next to other, healthier memories. As my EMDR therapist put it, it helps the brain become “unstuck.”

EMDR can work quite well for parents like me. (Though of course, like any therapy or drug, it may not be for everyone). In fact, the reason I decided to try it is because I have several medical mom friends who found success with it. I had also heard positive reviews of it on The Rare Life—a podcast that focuses on issues that affect parents of children with rare diseases. If it worked so well for those other parents, I thought, perhaps it would work for me.

Guided by my EMDR therapist, I focused on specific traumatic events, feelings, and thoughts in our sessions while I followed a light bar with my eyes. Though it felt silly and strange at first, it quickly won me over. It didn't take long for me to feel my brain creating new connections, uncovering buried emotions, and making sense of things I had never before understood. Together, my therapist and I explored my grief about JJ’s diagnosis, my feelings of guilt and shame, my resentment toward other people, and my sadness about my family’s altered path in life.

I came out of the experience feeling stronger, more resilient, and most importantly, less stuck. I was able to create a new narrative for my life—one in which I was not the helpless victim of unexpected circumstances, but an active participant in our family’s success. I realized I didn’t have to focus on the pain and anguish Rett Syndrome has inflicted on us. Instead, I discovered just how many meaningful relationships we have forged in our new path and how these connections have served both as our salvation and our fuel. I began to focus on the fact that ours is a house of love, not of tragedy. EMDR also left me feeling more compassionate toward myself and more forgiving of others. I am no longer as angry and resentful.

A therapist in The Rare Life episode described EMDR as a way for the brain to learn to heal itself. For me, this is perhaps the most empowering part of my therapeutic experience. I played an integral role in my own healing. Though it does require the help an experienced professional, EMDR is, at its root, a self-guided path to discovery.

As medical parents, we so often feel powerless and out of control, and yet this lifestyle has forged us into some of the strongest people out there. If we can harness that strength to heal the traumas that stem from our children’s diseases, there is no telling what else we can do for ourselves and our families.