My Daughter With Epilepsy: Reflections From a Father
Sloan Olivia Holland. The name of the girl I knew would be trouble as soon as the doctor told my wife Jennifer and I that we would be having a girl. At first I was elated on the outside and kind of bummed on the inside. I say bummed probably for the same reason a lot of fathers do. I recalled being a young teenager and the girls we used to chase around relentlessly and my thought would always go to “I guess it’s payback time”. Then you add her mother’s good looks and her spunky attitude and I knew nothing but constant worry was in my future. Little did I know it would be for something other than boys.
Like most fathers, there is an attachment to my daughter that I cannot describe in words other than to say I would gladly give my life if it meant it would save her from any pain. I would do anything for her to be happy every day. I try so hard to give her my undivided attention no matter what I am doing or what the subject of her conversation is. I do this because I honestly don’t know when I will have the chance again. Not because she’s a momma’s girl but because of PCDH19 Epilepsy. My wife tells people all of the time that I would wrap Sloan in bubble wrap if I could and she is not completely wrong on that.
When I watch her play outside in the driveway or in the street and running around having a great time with a big smile on her face, inside I’m just hoping she doesn’t have a seizure and go face first into the concrete. When she asks if she can ride her bike down to the end of the street like her brother, I hesitate even though it has training wheels.
When I see Sloan do things that all the other kids can do, it makes me so proud not just because I am her father but because I know what she has gone through to get there. Watching her in gymnastics, playing basketball or softball, the parents on the other side have no idea what she’s been through or that she even has this terrible disease. They don’t know how many times she has literally fought for her life and how much she has already survived in her 6 years on this earth. They don’t know she’s gone into status more times than their child probably ever will. They don’t know she’s had more than a thousand seizures. They don’t know she’s had seizures that have lasted over 45 minutes. They don’t know she has to take medicine every morning and every night that I can only hope will keep the seizures at bay. They don’t know they are watching the most resilient, hard nose, never give up, keep trying until she gets it right girl they have ever seen. They don’t know that while they are enjoying watching and cheering on their own child that I am sitting there just praying that mine will not have a seizure during this time. That worry never goes away and will never go away until we find a cure. All I can do is feel relief that she made it through another game, another class and another day seizure free.
As a father of a child who suffers from PCDH19 Epilepsy, I know that every day seizure free for Sloan is a gift. I know that each accomplishment, be it spelling a new word, adding some new numbers together or reading a full sentence in a book without asking for help is a gift and a step forward because I have seen her struggle with the same words, the same numbers or the same sentences in the same book just the day before.
I know that as a father and as hard as it is to do at times, I have to let her be the child she is. To let her walk up the stairs alone from time to time. Let her ride that bike with training wheels down the street with her brother. Let her chase her brother and his friends around the house and play tag while deep inside just hoping she doesn’t face plant into the side of a wall. Letting her go is both the hardest thing to do but also the most rewarding because she constantly proves that she can do anything she puts her mind to. Will it be this hard to let her go when it comes time for her to move on with her life as she sees fit? I can’t even begin to think about that right now but when she does decide to do so, I know she will show me once again that she c