Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.
Athough ours is not a story of epilepsy, seizures have now been added to the long list of challenges in our daughter’s world. As a mother of a child with “complex medical issues” I often wish it were me, and not my daughter, who would have to deal with the everyday difficulties that life brings her way. It just doesn’t seem right that a child, now only 11, should have to endure these challenges, and yet she does it with such grace.
My daughter was born with a muscular myopathy that impacted her heart. She went into heart failure at four weeks of age, but a cocktail of medications allowed her heart to strengthen and stabilize. She quickly demonstrated her fighting spirit, amazing her doctors as she pushed through her myopathy, continually getting stronger. As a toddler she fought to eat, crawl and ultimately walk, always persevering through countless hours of doctor appointments and therapies.
Unfortunately her heart couldn’t keep up with her body however, and at 4 1?2 she went into heart failure while at the hospital for her quarterly check-up. Sarah was put on a heart bypass machine and for seven months we lived in the cardiac ICU of Philadelphia’s Children’s Hospital. There we battled infections, viruses and other complications, tweaking treatments and medication until she finally received her perfect new heart. While she gained a strong new heart, she also left with a spinal cord injury and weakened lungs, the types of issues that come with the traumas of chronic illness.
When I was first asked to write this piece, I wasn’t sure how our experience tied to epilepsy. Although I realize all complex medical conditions have a physical and emotional toll, I wasn’t sure I could fully understand what it was like to live with something that interfered with one’s cognitive ability. My daughter has always been able vocalize her pains and, although stressful, we’ve generally felt we had time to think through a plan. Unfortunately, we can now add seizures to our list of surprises. Her seizures were caused by a condition known as PRES, brought on by a sudden and unexplained spike in her blood pressure. Other than seeing her heart stop for the first time, this may have been the most frightening experience of our lives. As her eyes veered off to the side and she went basically unresponsive, I felt helpless. I had no idea how to respond and believed my worst fears may have been coming true. We watched her stare off into space and knew her cognitive function was being compromised for some unknown reason, so we weren’t sure we’d ever again see her spunky spirit or smile. Thankfully the “R” in PRES stands for reversible and with her blood pressure under control, we can hope to avoid future episodes.
As I reflect on this path we’ve traveled, two analogies often come to mind. At times I feel as if we’re fighting a war. As we manage through the stress and face difficult decisions, we must trust and depend on our officers (medical staff) and we have become close with the fellow soldiers (families) around us. Families in a pediatric ICU come from all walks of life, and like soldiers, we deal with our stress in various ways, but all are there for a common cause: to care and protect their children. We feel their joy but we also bear their grief. I’ve also thought of myself as one of those toy punching bags that takes the punch but keeps popping back up for more. Just when we pull ourselves back together, we get punched down again and the air slowly leaks out of us. It’s the simple messages from friends or smiles from our daughter that fill us back up and restore our strength.
This world has opened our eyes to many things both good and bad. A life with chronic illness prevents you from ever being able to truly relax. It’s a rollercoaster ride and you know you’ll never get off it. We worry about what the next day may bring, and are often afraid to plan too far into the future. I firmly believe there is no pain greater than watching your child suffer.
However, we do our best to focus on the positive. I am continually humbled by the goodness in people. We have doctors and nurses who are like family, seeming to care for Sarah almost as if she were their own child. I’m struck by the everyday stranger who looks past the wheelchair and trach tube and talks to Sarah like any other child, bringing a big smile to her face and helping her see how special she truly is.
As I watch celebrities dump ice water on themselves or hear that On The Edge: Living with Epilepsy will be broadcast to millions of PBS viewers, I’m also driven by hope. Over the course of Sarah’s short life she has benefited from new medications, therapies and medical devices that have enabled her to live a happy and productive life. We hope to see continued focus and progress treating spinal cord injuries, managing transplanted organs and treating the many other illnesses such as epilepsy. We know there is so much progress yet to come.
— Written by Cheryl Fyock