It’s early evening on a Monday. I am cooking; Daniel, 7, is watching television and our baby, Michael, is toddling around. It appears to be a typical scene.
In our case, however, the tension is mounting. I turn periodically to watch Michael. Each time I turn, I catch Daniel watching Michael, too. My heart races. I can tell Daniel is getting worried; his eyes dart back and forth from the TV to his brother. “Don’t worry, he seems fine,” I tell Daniel.
I take a deep breath and exhale slowly. I stir my pasta and then I hear a crash. “Mom, Michael is having a seizure!” Daniel yells.
I run to Michael, rolling him to his side and away from the furniture. I grab the anti-seizure medication. My 7-year-old calls 911 and says, “My baby brother is having a seizure. 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 am awed by his composure and his courage.
My husband arrives at the same time as the paramedics, who fill my tiny kitchen with their big bodies, their big boots and their equipment. “Honey, don’t take off your coat. We’re going to the emergency room again,” I tell him.
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 4 and 7 p.m., but not always.
We now have a diagnosis for Michael-Dravet’s 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. When we received Michael’s diagnosis, we sent her an e-mail in French. “Our son has just been diagnosed with Dravet’s Syndrome. We don’t know what to do and we are in despair.”
She sent us an e-mail within 24 hours. It said: “Courage. I will help your child.”
When we met with Dr. Dravet, she told us Michael’s long-term prognosis was impossible to predict. Science knows very little about the brain and even less about epilepsy. However, she 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 OK.”
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.
Michael is 4½ years old now and doing better. He is a warm and engaging little boy with a sense of humor and mischief. Although he is behind his peers, his development continues to progress, defying the odds. We are lucky and we work hard with him to maximize his potential. Others we know are not so lucky. Their children cannot walk, cannot speak and have limited cognitive function. 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 me, our dreams for Baby Boy de Lara were burned to ashes but new dreams are rising and taking flight, and we see their reflection every day in Michael’s sparkling blue eyes.
And always, we remember Dr. Dravet’s words: “Have courage. Don’t give up hope. Your child depends on you to believe in him and tell him that he will be OK.”
Julie de Lara is a mom of two living in Evanston.
