Sometimes I feel as though I’m being too overprotective of Meghan because she lives with epilepsy, but I guess sometimes I just don’t know where the line between normal and excessive is drawn?
We do all the normal stuff a kid her age does, we go to birthday parties, we swim (as long as my husband or I are present), we play at the park, Meg takes piano and just recently she enrolled in after school Drama Club! However, she still sleeps with us and I’ve never let her stay at someone elses house!
I mean we’ve had kids stay the night at our house, but the thought of her having a seizure at someone elses house scares me! Let’s face it seizures aren’t pretty and they can be frightening if you’ve never seen them before! Heck they still frighten me! Most of Meg’s recent seizures have been during the night or in the early morning. I guess I just have visions of her seizing or going into status and no one noticing or her aspirating and choking.
A few weeks back I had gotten up to make a cup of tea in the morning and Meg was still sleeping, in the brief time I was in the kitchen Meg had a seizure. I came back into the room to find her pillow covered in saliva and what I thought at the time was throw up, but ended up being blood mixed with saliva from her biting her tongue during the seizure. I knew the seizure could have been anywhere from a few minutes to 15 minutes long and I felt so guilty for not staying in bed till she woke and being there for her. Now I know I wont be present for every seizure she has, but I would hate to burden someone else with that guilt! Not to mention I’m not sure how comfortable my family members or her friends parents might be with having to administer rectal diazapam if it were needed? I want her to feel independent and I worry sometimes that I maybe do too much for her or that I’m too overprotective. I worry I might be stunting her independence and god forbid her confidence.
Some nights I’m up till all hours of the night because I’ve heard her swallow a certain way or because she’s done something that’s reminiscent of a previous seizure. I must ask her a million times a day how she’s doing? Sometimes if I call her for something she’ll actually say I’m fine Mom! So how do I protect her, yet still give her enough space to feel confident and be independent? How do you come to peace with your worries and fears about what could happen? I don’t want to fail her! I tell her all the time how smart and amazing she is, but is that enough?
Coffee, Chocolate & Xanax 
I don’t even know where to begin to respond. I was the child and still am at the age of 29years old. I live 2hours away from my parents and they still are very protective. I call every 30mins or so when driving long distances. If I am off by a few minutes my parents call me. As a child I also did not sleep over at a friends house though I had a few seizures in front of my peers, once on the bus and another time while driving my friend home from a concert. I actually was not invited to their house after they saw my seizures. I do not think what you are doing is wrong at all. Growing up it was hard to handle knowing my friends did not want me over there. I also did many things such as swimming with my parents around. But once we had to do it for gym class I was given my own lifeguard.
I still ask all the time how did my parents deal with this. They have only seen me have 2 out of 13 seizures I have had. They both worked around an hour away from our home and I went to college almost two hours away. After I turned 18 I “cut the cord” I guess you can say and did not let them hoover over me anymore. I became independent when every other teenager was. As far as when I was younger they made sure I was as safe as I could be. They missed major seizures and I am sure that hurt them but we let my family know how to respond. My older sister was amazing and stepped up every time. Right now for you do what you think is best for Meghan. Love her and protect her she will still grow from it all.
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Bless your heart. It’s so hard, I know. I think whatever you’re doing is fine. Meghan is a great kid and well adjusted. Eventually, she won’t want you around, so be protective and be there for her. Time is so short. xox
And there ain’t nothing with co-sleeping if it works for you. If someone says otherwise, then tell to bugger off.
Sarah (above) brought up some good points. Meghan will let you know when she’s ready as she’s already demonstrated that with her “I’m fine” response. Also, good to know about Sarah getting her own lifeguard. You could always request one at the YMCA or another public facility.
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