So far today, no seizures.
Or yesterday or last week or last month.
My son has not had a seizure in ten weeks.
526 days of having seizures. Despite hospitalizations, new medications, increasing doses of medications he’d already had, multiple blood tests, scans, sedations, IV injections, contrast dyes and three care team referrals, Connor’s seizure disorder was not under control. Until now.
It is easy for me to get caught up in counting a sad list of disparity. The numbers of my son’s perceived burdens and obstacles can add up fast: hearing loss, cognitive delays, vison impairment, slow processing speed, low physical endurance–the list goes on.
It can bring me comfort to lean into the pain and struggle, for Connor, myself, my husband and my daughter. It can help justify bitterness or feelings of guilt and shame or anger. It can make sense of my reasoning of “why nots” and “we can’ts,” limiting the list of possibilities.
But today I will stop counting. Today, Connor is seizure-free. Today, Connor has a 4 percent chance that his anti-convulsing medications will work. Today, 4 percent is more than enough. Today, Connor has a sister who deserves equal treatment. Today, Connor is capable of dreaming.
Today, I will say yes to tee-times, sleepovers at a friend’s house, force homework and house chores. Connor says, to get through the tough times do what makes you happy. Well, it is time to let Connor do more of what makes him happy. I’m excited to dream with both of my children, ask questions, remind them of limitless possibilities and learn what else they have to teach me.
A mom once told me that a parent is the ceiling of how far a child can dream and experience life. That statement is true to me. Now, I understand that there will be cancelled tee-times, he will inevitably get hurt exploring the world and he will shed tears through tasks that he doesn’t want to do.
But even those experiences are the side effects of living. We need to focus on the good and let in the joy. I also understand that it is more likely than not that Connor’s seizures will begin breaking through his medications. I cannot control that. What I can do, though, is not let that steal from his today.
Tomorrow is unknown. I will not wait for another seizure to strike. I will not allow myself to think of what has been taken away or what he can never do. Because if I know Connor, he can do way more then I’d think. He already has.
My son was diagnosed at 6 weeks old with a brain tumor. It was massive and required emergency brain surgery and an aggressive plan to treat the remaining cancer cells. Connor made it through surgery, survived chemotherapy and a bone marrow transplant all before he was 7 months old. Now, ten years later, my husband and I are navigating survivorship late effects, raising his preteen sister and always striving to keep life in balance.
Written by Mindy Dykes, Community Outreach Coordinator at Children’s Cancer Research Fund