The Mighty Logo

When Things Don't Go as Expected Due to My Child's Medical Condition

The most helpful emails in health
Browse our free newsletters

Our alternative Christmas story begins at 5:35 a.m. on December 25. Our 6-year-old daughter woke us up, not because she was excited to open her presents, but because she has epilepsy and had a seizure.

This event had been foretold, not by biblical prophecies, but by the fact that Eve’s seizures currently happen like clockwork once a month. The last three were on the November 26, October 25 and September 24, so my husband and I had been fully expecting one.

Other relevant stories:
Epilepsy Triggers
Can Flashing Lights Cause Seizures Without Epilepsy
Can Students with Epilepsy Participate in Sports

We swung into a sadly well-practiced routine. As per Eve’s seizure protocol, I administered her emergency rescue medication and dialed 999 (the British 911). Eve has a history of serious respiratory distress during a seizure, and her protocol stipulates that we must always call an ambulance, even if we don’t end up going to A&E.

The angel in the ambulance control centre listened to my swift explanation and the urgent tone in my voice, asked a few quick questions and assured me an ambulance was on the way.

Less than seven minutes later our very own two Wise Men arrived. They were paramedics from the east, or rather, South East Coast Ambulance — the ambulance trust that serves Surrey, Sussex and Kent. And they brought with them some amazing gifts: life-saving expertise, medical equipment to monitor Eve’s vital signs and oxygen.

They also brought compassion and concern for a child they’d never met before.

They immediately swung into action, administering oxygen, checking Eve’s heart rate and monitoring her breathing. Once Eve comes out of a seizure and is responsive, then she’s past the danger zone. After a few minutes, she took the oxygen mask off by herself, started kicking her foot in annoyance at the heart-rate sensor taped to her big toe and swatted away the digital thermometer when one of the paramedics tried to take her temperature. Then she opened her eyes, reached out to me for a cuddle and I had my daughter back.

After monitoring her for a while longer, the two Wise Men were satisfied with Eve’s vital signs and all-round responsiveness. We all agreed that we didn’t need to go to A&E on this occasion. They completed the obligatory Incident Report, leaving us a copy for future paramedic teams to crib (pun intended) from and went on their way. It was almost the end of their shift and we wished them a well deserved merry Christmas with their families.

After the paramedics left, we laid Eve’s sweet head down for her post-seizure sleep on the sofa, a manger of sorts, where we could easily keep watch over her. Then the almost never meek or mild mother of this amazing child got rather upset. Christmas should be the most exciting morning of the year for any child, yet my little girl started her day off with epilepsy making yet another unwelcome appearance. Enter the third Wise Man in this story: my husband, Steve.

He reminded me that Eve experiences “Christmas” levels of happiness on a regular basis: when she goes swimming, when she watches one of her favorite Disney films, when Daddy makes her laugh and when it’s spaghetti bolognaise for dinner.

And then there’s the magical event that takes place every weekday during term time at 3:15 p.m. when Mummy picks her up from school. Eve’s overwhelming joy when she comes out of her classroom and sees me across the hall melts my heart. She doesn’t know who Father Christmas is, but she does at least believe in me.

Steve was right; Eve may not understand Christmas or presents or the story of the baby who was born in a stable, but she understands love.

Eve is loved, well cared for, safe from external threats, and lives in a wealthy country with emergency medical care available free at the point of need 24 hours a day, 365 days a year — however often it is required.

Or as the last few lines of the paramedic Incident Report puts it, “Patient to remain at home. Parents very knowledgeable about patient’s condition and treatment. Will call us back should symptoms re occur. No safeguarding concerns.”

Our Christmas started in a less than “perfect” way, but it was nonetheless full of gifts that can’t be bought or wrapped or stuffed in a stocking. And that’s the best present anyone can wish for.

Although Santa baby, if you could slip a cure for epilepsy under the tree next Christmas, then I’d be eternally grateful.

A version of this story originally appeared on Rollin’ With Mama.

Getty image by Nadezhda1906

Originally published: January 10, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home