I almost forgot what a seizure was like. I have dreamed for the past 4 years for Remy to stop having seizures. I would wonder what our life would be like.Over these last few months, that dream has sorta come true. Remy has had clusters but only one that lasted a few days. the other seizure clusters lasted less than 24 hours which is unheard of for Remy.
She got a summer. We went camping 7 times. She went to the beach, the boardwalk, the Monterey Bay Aquarium, outings almost every day. She had the time of her life being a kid just like kids are supposed to be. free.
Yesterday seizures popped back up and reminded us all that they are still sitting below the surface of normal. Remy had seizures every 10 – 15 minutes at times and when we took out the heavy-duty ammo (10 mg Diastat) she still seized. (sigh)
I want so much for her to be able to do as much as she can do without putting more restrictions and limits on her. But now I wonder. With her developmental struggles and autism that affects every aspect of life, I want so desperately to let her be free from the chains that keep her safe.
We tell our kids to be brave and put themselves out there. We want our kids to be able to take chances and live. But I am constantly pulling Remy back. What is that showing her? what is that teaching her? It doesnt matter i suppose. there is no other way to be.
Some people look at our family and think “wow, they are amazing. they are giving their daughter so much opportunity and a chance to explore and learn and grow like everyone else” others think “I would NEVER let my child play on a playground or go to school or stay with a babysitter if she had seizures like Remy” But no matter what, I suppose whatever I do will be both amazing and horrendous. That is the biggest struggle I would say of being a mom of a child with epilepsy and autism. Where do you find that balance?
Remy has been in bed all day. She seemed pretty happy and I didnt expect any more seiures. So I asked her if she wanted me to paint her nails (which she absolutely LOVES). As we walked into the bathroom, she dropped.
It was so fast.
Her head hit the cabinet door on her way down. Thats going to hurt when she comes to.
I think to google ‘bubble suit’ so that never happens again.
I dont really have the answers. Just my mind processing the poopy day.
Hoping the evening gets better. In the meantime, I have to start counting my blessings because there are so many. One of which is that Remy is the strongest person I know and I know she will be just fine.