One day last week, after I dropped my son off at school, I walked past the playground and the late kids being hurried by their parents across the street. The kids were a few years older than my son and, on the walk home, I began to think of when I was their age and lived in an apartment complex in Connecticut.
I remember there was a common area between the apartments and the street that was covered in grass, with a big, green boulder that I used to climb, imaging it was the tallest mountain. My friends and I used to meet on the grass and play baseball, or tag, or ride our bikes on the sidewalk through the buildings.
My sister was among the older kids that used to also congregate by the boulder, usually either ignoring or taunting their younger siblings. But there were no parents. Many of our parents, including my mother, were single parents or low income parents trying to make ends meet, so they were working or inside catching up on chores and other duties. So we were left to go outside, and play together, and to fill up our days with whatever we felt like doing.
If the older kids got to be too much, my friends and I would grab our fishing poles and walk through the woods adjacent to the apartments to a small creek where we would catch frogs and small fish and where I swear I saw a river monster (which was probably actually something like a muskrat). There was a sledding hill on the other side of the complex, and patchy wooded areas that we could explore with plenty of trees to climb. Our ability to roam without parental supervision or babysitting by our older siblings made us feel very free.
We don’t have any spaces like that near our house, and living in a big city is a completely different environment than the area around those apartments when I was my son’s age, but I wondered if my son would ever get to experience that same sense of freedom that I had when I was living in those apartments. Even if there were places to roam and their weren’t busy streets to navigate, will his seizures prevent him from being able to run off and play without the watchful eye of my wife, me, or another caregiver? Will he always have to be around other people, particularly someone who knows what to do if he has a seizure?
I’ve always said that I didn’t want epilepsy to make my son feel “less than”, or for it to keep him from doing anything he wants to. But the reality is that it might, especially if we continue to have such a hard time getting his seizures under control. He probably doesn’t notice it as much now, because he’s six and because he’s not supposed to venture out in to the world by himself. But as he gets older, and as he’s not able to experience the same freedom that his friends do, I’m going to need to find a way to make it okay.
I don’t know how many seizures your son has. So I can only tell you how I felt.
I didn’t feel like I was treated any different than my friends. I said I didn’t.
When I was younger I didn’t have a label on me. So the kids in the school would make fun of me.
they were scared of me in HS. Which meant I didn’t get asked out like the other girls.
You have to let him know you will be there.
I think as he gets old he will understand. Epilepsy is going to be a part of his life.
It is the way eh excepts it and work around it.
I have had Epilepsy for 55 years.
What hurt the most was learning to rive. I had to wait 2 years longer to learn to drive.
You want to fix everything. You can’t only he can.
Go with the flow and just guide him. DO NOT SMOTHER HIM!
Stop looking into the future. Live in the present.
You never know when aseize will visit.
Have him name his seizures. Mine is the gray ghost.
Thank you for taking the time to share your story, Colleen. Great advice, and I am really trying to find that balance of protecting without smothering, guiding without taking control.
~Dave
My son is 11. I feel like I wrote your concerns above. I am slowly beginning to allow freedoms. If you are lucky for your son to have a true friend, empower them to help be his protector. Grant them early responsibilities with the use of a cell phone to be able to call you if a problem arises. Have a practice drill so they know what to do. God will put the right people in his life, you just have to be open minded enough to realize who they are. We are in Wisconsin and I am not sure where you live, find the right parents of friends who you can trust. He will be Ok and so will you 🙂
Your friend in this Journey,
Amy
Thank you, Amy. It really helps to know that we’re not alone. It’s a struggle for me to open up and trust anyone other than myself, my wife, and our nanny with his care. I know I need to, and I know I will get there, and I appreciate the encouragement and knowing you’re out there. (We’re in Philadelphia, by the way!)
~Dave
My daughter was 11 years old when our lives changed. She was on the way to a school dance with her friends when I noticed she was “fluttering” her eyes. I told her she was being silly and to stop playing around but, she told me that she wasn’t.. I immediately knew. Something deep inside me knew. There had been no warning signs. No hints of what was to come, and as far as I know no family history. But, standing there in my driveway that cool October evening (the sky on fire orange, red, blue & purple.. you know those brilliant skies), before ever consulting a doctor I knew. Shortly after that Friday evening Sarah was diagnosed with sudden onset epilepsy.
She is now 14 years old, and although she doesn’t have sever seizures she has multiple events every day, even with medication. I go between being thankful, because of the type of seizures she has, to wanting to scream out “WHY!!!” As she gets closer to being 16 I wonder will she be able to drive? Will we find the right mix of medication/treatment that will give her that freedom so many take for granted?
Epilepsy is not who Sarah is, but it is part of her and shapes her world in ways I may never know. I do my best, not always successfully, to not over parent her. To give her her freedom and support her in her goals.
Wow, Adreienne, thank you for sharing. That’s exactly how I felt when it happened to our son…right down to us telling him to stop fooling around during what turned out to be his first seizure. I like that mindset of epilepsy not being what they are but just being a part of them. My best wishes for your daughter and for you in this journey, as well. Maybe one day we’ll all have answers.
~Dave