When You Need to Help Yourself Before You Can Help Your Child
We were coming home from an amazing trip to Maui, where my son thankfully had only one seizure over the course of a nine-day trip. It was my son Brock’s first trip anywhere. After the seizure he had on the beach, I bawled like a baby.
I had been doing everything in my motherly power to try and gain seizure control. Diet, bowel routine, hydration, sleep schedule, stimulation control. All just to maintain that priceless sideways smile my boy has had since 3 months of age. But when the seizures come, that contagious smile always dissipates.
My mom told me it was OK to cry shamelessly on Kamaole Beach in Kihei. She said, “Don’t worry, you took off your cape for a minute because it didn’t match your bikini.” After a week of perfect sideways smiles on the beach, it was time for takeoff on the plane. We were going home. I looked over and Brock was sleeping peacefully. In the matter of one second, his eyes darted open. They were bloodshot. He had a full tonic-clonic seizure. The flight attendant told me I had to safely stow our bag. I calmly explained my son was having a seizure and his rescue meds are in the bag. She said OK, no problem. Three more flight attendants came and said we should be getting the medical staff. I said, no, it’s normal for us, it will be OK.
Other relevant stories:
• Famous People with Epilepsy
• Epilepsy Triggers
• Can Flashing Lights Cause Seizures Without Epilepsy
One flight attendant came back a minute later and said, “Ma’am, you can take care of him, but put on your seatbelt.” I apologized, and she said, “it’s OK, just fasten your seatbelt.” Like my mom always reminds me, in full metaphoric form, “You always put on your own oxygen mask before you help anyone else.”
However, I will always put myself second until I’m reminded how important it is that I put myself first — first for him. Because he needs me. So we moms always must remember to fasten our own seat belts first. Because if we aren’t taken care of, neither are they.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Amy is a mother of four, biologically the mother of two boys and stepmother of one boy and one girl. Her younger son Brock, who is 8, was born with Hypomelanosis of Ito, refractory epilepsy, cortical visual impairment and global delay. Amy works in the field of Indigenous education. She is an advocate for community inclusion and recently formed a nonprofit with four other women called Foundation for Cohesive Communities. The focus is on securing equipment and supports to allow children with special needs to meaningfully engage in all aspects of community life.
amy-quintal