I am in the family room with my sons Daniel and Michael at about 4pm on a Monday night. Daniel is seven years old at the time and Michael is about 9 months old. I am cooking, Daniel is watching television, and Michael is toddling around. It appears to be a very typical early evening with a family gathered together, relaxing and preparing dinner awaiting the arrival of the rest of the family.
In our case however the tension is mounting. I turn periodically to watch Michael. Each time I turn around I catch Daniel watching Michael as well. My heart is beginning to race and every time I hear a bump or a thud I whip around to see what it is. I can tell that Daniel is getting worried as well by the way his eyes dart back and forth from the T.V. to his brother. I say to Daniel, “Don’t worry. He seems fine.” I take a deep breath and exhale slowly. I stir my pasta and then I hear a crash and Daniel saying urgently, “Mom, Michael is having a seizure!”
Daniel and I leap into action. I run to Michael and crouch over him, rolling him to his side and away from the furniture. I grab the anti-seizure medication and give it to him. My seven-year old calls 911 and says, “My baby brother is having a seizure. We live at 2712 Prairie Avenue. Please come quickly.” Then he grabs a flashlight and runs outside into the darkness that ordinarily frightens him, to wave the ambulance to our home. I never asked Daniel for this assistance. Daniel assumes these responsibilities out of love and a desire to help. I am awed by Daniel’s composure and his courage.
My husband arrives home at the same time as the paramedics, filling my tiny kitchen with their big bodies, their big boots, and their equipment. I say to my husband, “Honey, don’t take off your coat. We’re going to the Emergency Room again.” My thoughtful and steadfast neighbors, Jane, Pam, and Lynne, magically appear and turn off the stove, put food away, and take Daniel to their homes to feed him dinner and wait with him until my husband and I return with Michael many hours later.
This was our routine at least once a week for about a year. Michael’s seizures occurred often on a Monday, but not always, often between 4PM and 7PM, but not always. Things have calmed down a bit since then although we still call the paramedics from time to time to our house, to the beach, to Michael’s preschool, to my mother’s house and even once at the doctor’s office. We carry the emergency seizure medication with us at all times, even when we go for a walk around the block.
We now have a diagnosis for Michael; Dravet syndrome, a severe and intractable form of epilepsy that has a spectrum of psychomotor delays from learning disabilities to severe mental retardation. It is one of three “catastrophic” epilepsies that exist but perhaps the most rare.
Dr. Charlotte Dravet is the French neurologist who identified this epilepsy syndrome. She is still living in Marseilles, France, when she is not consulting and lecturing all over the world. When we received Michael’s diagnosis and we discovered that Dr. Dravet was still working, we sent her an email in French. We wrote, “Our son has just been diagnosed with Dravet syndrome. We don’t know what to do and we are in despair.” She sent us an email within 24 hours. She wrote, “Courage. I will help your child.”
We met with Dr. Dravet shortly thereafter. She examined Michael and spoke to us at length. She told us his long-term prognosis was impossible to predict. He seemed to be doing well but that could change. Science knows very little about the brain and even less about epilepsy. However, Dr. Dravet did give us an invaluable piece of advice:
“Have courage. Don’t give up hope. Michael depends on you to believe in him and tell him that he will be okay.”
There is an expression, “Desperation is the enemy of a parent with a sick child.” The grief can be overwhelming, paralyzing. It can leave you breathless. It is so hard sometimes to push it away but of course you must pull yourself together to take care of your child. There is no one else.
Michael is 4 1/2 years old now and doing better. He is a warm and engaging little boy with a sense of humor and full of mischief. Although he is behind his development continues to progress, defying the odds. We are lucky and we work hard with him to maximize his potential. Daniel is better as well. He is less traumatized, less worried about leaving Michael to go to school or a friend’s house or to visit his grandmother. As for my husband and I, our dreams for Baby Boy De Lara burned to ashes but new dreams are rising and taking flight and we see their reflection every day in Michael’s sparkling blue eyes.
Have courage. Don’t give up hope. Your child depends on you to believe in him and tell him that he will be okay.
Julie de Lara August, 2008
Published in Parent Magazine 2009