Sometimes, something happens that changes you forever. Not in a good way. It leaves you a different person, with different fears, insecurities and perspectives. Sometimes, what you experience is some impactful, so traumatic, that your brain is branded, your psyche is scarred. You now live life, traumatized.
PTSD is the acronym for “Post Traumatic Stress Disorder.” Most people associate PTSD with veterans, appropriately so, with staggering numbers of veteran suicide in America resulting from PTSD. The number now, is 22 veteran suicides a day in the US, and pharmaceuticals aren’t helping. In many cases, side effects from the pharmaceuticals make it worse. Weight loss or gain, acne, headaches, or worse, homicidal and suicidal thoughts are common side effects for the prescriptions for most vets with PTSD.
But looking at other demographics of people with PTSD, non-veteran PTSD: First responders, child victims of violent crimes, adult victims of violent crimes, survivors of natural disaster, caretakers, parents of chronically or terminally Ill children, and the dynamics of the PTSD are different, but the symptoms, impact and often, the outcome, are sadly the same. We just don’t keep a running count of those suicide rates.
Last year, Rachael Selmeski testified before Colorado’s House of Representatives asking members to support legislation that would allow medical marijuana patients to have their medicine administered at school, “Jack’s Law’.
“Everyday I fight just to keep my child alive,” Rachael told the tearful legislators who had heard her detail Maggie’s story, “Every single day.” The Selmeski family hasn’t fought everyday for weeks, or months, but for years. Rachael’s daughter, Magdalyne Joy, “Maggie” or “Mags” has epilepsy. She’s had seizures since she was an infant.
Their family blog talks about her first prescriptions: “Maggie is on 5 medicines, one of which is Pepcid for her little tummy to help deal with the others. She takes Keppra and Trileptal at 7 and 7, and then Clonazepam and Zonisamide at 11 and 11. Those around us notice the traveling pharmacy,” posted Rachael. What others didn’t see was the side effects, the misery and the waiting. Living everyday with the difficulties that come with having a disabled child: medical equipment, doctor’s visits, wheelchair maneuvering, accessible parking, accessible buildings, accessible bathrooms, and waiting. Waiting for the seizure that will kill their daughter. Wondering if this will be the day. They are traumatized.
Sebastien Cotte and his wife, Annett, were awaiting the birth of their first child, a son, Jagger. The pregnancy and birth left them with a seemingly perfect, bouncing baby boy. At 3 months, there were some cardiac flags but at 11 months old, the nightmarish diagnosis came, mitochondrial disease. Their beautiful son, who they thought was healthy, would never, ever be healthy. At 13 months old, Jagger was diagnosed with Leigh’s disease, the terminal, incurable form of mitochondrial disease. Jagger is six years old now and the family has shifted mentally to quality of life, not quantity. “Even when I am across the country on business, in a hotel room by myself, sometimes, I hear Jagger’s monitors go off,” said Sebastien emotionally, “it wakes me from my sleep often. I think I hear the beeps and alarms from his monitors. I hear the ambulance sirens. When he is not even there, I’m not even home. It takes me to dark, sad places mentally and emotionally. Truthfully, it is exhausting. We are waiting for our greatest tragedy, the loss of our child, and watching him decline everyday.”
There’s an adrenaline rush that comes naturally to people when there is an accident, injury or life-threatening circumstance. When it involves you or someone you care about, that jolt is more dramatic, more impactful and certainly burns a memory in your brain and in your heart, and it is exhausting. Parents who experience the roller coaster of emotions that comes with an ill child, sometimes become numb, or “colder”, they are traumatized.
Many, if not most, parents of children who are chronically or terminally ill suffer from sleep deprivation and exhaustion. Levels of anxiety and stress are greatly increased and according to J.J. Spangenberg MA (Psych), MA (Clin Psych); D. Phil & N. Lalkhen MA (Clin Psych) who examined the psychosocial impacts on families of children with epilepsy. Their conclusion was:
“Childhood epilepsy has serious and far-reaching psychosocial sequelae for the patient and his/her family. Witnessing a seizure in one’s young child, especially a tonic-clonic seizure, can be one of the most anxiety-provoking experiences for a parent. It usually leads to feelings of helplessness and fear and often results in overprotection or overindulgence of the child…. Feelings of guilt and inadequacy develop, leading to further loss of self-esteem. Due to their anxious withdrawal from others, parents risk increasing isolation and loss of social support. Parents may grieve the loss of a “normal” child and this bereavement process may become pathological. Higher divorce rates have been reported among parents of children with epilepsy than in the general population.”
There are different dynamics for parents of children with chronic or terminal illnesses versus parents of healthy children who unexpectedly experience the death of their child. But both losses are significant and traumatic enough to cause damage, it is the most devastating loss a person can live through. Weeks, months in the hospital; years of round-the-clock care, and worry or the sudden loss of the most precious thing in the world to them – it can change a person. It can create a PTSD parent.
Support and information for non-veteran PTSD patients, specifically parents of chronically and terminally ill children, is almost nonexistent. Parents don’t want to admit they are damaged, traumatized because of the circumstances, some don’t even realize what it is, they just know “it” is there and they feel that nothing will be the same again. It is a treacherous road that patients with PTSD travel daily, but the support aspects for this demographic of PTSD patients is minimal at best.
Focusing on positive progress or positive anything is helpful, but having a support network of other people, who can relate, seems to be essential. Parents of sick kids, really sick kids, need to feel that they are not alone, that they are traumatized, but it will be alright, because it could always be worse.