There are so many levels of independence. During different stages of our lives, we all experience varying types of freedom. Toddlers appreciate the freedom of feeding themselves. Six year olds are so excited to be able to buckle their own seatbelt. Middle schoolers gain the right to attend movies unsupervised, and high schoolers obtain a license to drive. The list of things we get to do on our own is endless.
While I learned many years ago that this list would be different for my daughter living with epilepsy, I have always strived to give her as much freedom as I can. My pantry has always been open to her (and to all my kids – they know when they’re hungry better than I do). But for Bella, two times a day, I have had to make sure she swallows her medicine. This may seem like a small task, but it’s huge. Two times, every single day, I need to be sure she takes her medication – for 21 years now. If my calculations are right, that means 15,330 times she has had to take medication. She also has me, her dad, and three sisters that are all here to remind her – again and again – to take it. She also has grandparents, aunts, uncles, friends, etc. that know how imperative it is that she take her medication on time. We all remind her and ask her several times a day if she has taken her medicine. So she has the freedom to eat any food at any time, but we give no wiggle room with medication. She has likely been asked or reminded over 100,000 times in her life about taking her pills. It’s too much.
At the age of 16, my other kids were able to begin driving a car. Bella’s seizures and medications stripped that right from her. Now that we live in a small town, I give her the freedom to ride the city bus. I am always nervous that she could have a seizure, but I am hopeful that the bus driver would call 911, and I feel that being in public for a seizure would be better than her being home alone. This is a difficult thing for me, but seeing her confidence grow with this bit of independence has convinced me that I have made the right choice.
Bath or shower? Which one is safer for someone with epilepsy? What 22 year old wants someone in the bathroom with them while bathing? As she was growing, I always stayed in the bathroom with her. I have four daughters. We have always had an open door policy anyway. Privacy in the bathroom has never been present in our house. As the years have gone on, though, I have given her more and more time and space while in the shower or bath. She has taken showers while being the only one at home. I have been downstairs running the vacuum while she was in the bath. We have been very fortunate.
A couple weeks ago, Bella was taking a bath in my bathroom. I was washing my face and getting ready for bed. She was talking with me. Suddenly, she let out a scream. It was “the” scream she has before a seizure. Her aura is fast. She has a quick feeling that she is going to fall. I dropped what I was doing. As her left arm stiffened and went to the left, and as her eyes and head turned to the left, her left arm started to jerk rhythmically and she started falling into the tub filled with water. I grabbed her head to hold it out of the water and started screaming for my husband, asleep in the next room. If I let her head fall into the water, she could have gasped water into her lungs. If I hadn’t been in the room… If I had been downstairs… If I wasn’t working out to be strong enough to hold her… I can’t think of the “ifs” and can only be thankful that I was there. I am thankful her dad was able to help me get her out of the tub. I have seen thousands upon thousands of seizures. The one that lasted six hours was mind numbing. This one, though, fighting against a very small body of water was horrific. A young woman the same height as me, her body slippery, and jerking, and not complying with me trying to save her… This will stay with me forever.
It had been a full year since Bella had any seizures. This one seizure in the bathtub lead to a cluster that landed her in the hospital, causing her to miss her own sister’s wedding. The biggest impact, though, is the fact that this seizure stole Bella’s confidence in bathing or showering alone. She needs somebody with her, somebody able to keep her head above water. She can no longer be carefree while doing something the rest of us take for granted.
As I celebrate Independence Day in America this year, I will be praying for every person everywhere that feels they are missing out on some sort of freedom. I am thankful for the independence I have in my life, and I will continue to find ways for my daughter and others living with epilepsy to find their own areas of independence. It is okay to accept help from others when you need it. It is empowering to be able to make your own choices when you are able. Life is all about balance. Whatever freedoms we are stripped of, we must find others that will take their place.