Great movie but not so great when you’re dealing with your child’s seizures at 2:30 in the morning every morning.
You can’t sleep through them because she manages to get up from her bed and charge down the hall like she’s going to rob the place and its not like you want her to seize alone anyway. I am usually startled out of sleep or Liz is calling out to me to get up because that’s the deal we have made. She has the baby and I have Addie. The ritual is to get her back to her room, give her a medication called Vimpat and stay with her until she falls back asleep which can take anywhere from 5 minutes to an hour. The five minute nights are easy and typically I can stumble back down the hall and slide back into bed but the nights that it takes longer for her body to calm down can be somewhat taxing. When sleep for her is hard to find and five minutes turns to 55 minutes, I find myself frustrated, weary, and feeling sorry for myself. I begin to think of things like, “Why Addie”? “I wonder what it’s like to get a full night’s rest”? Sometimes it’s extremely selfish and the thoughts are “Why me”? Certainly, these are natural thoughts for a sleep derived special needs parent. However, I certainly don’t want to live in an “Eeyore” world. Sometimes there’s no stopping the negative thoughts and questions but if I stop and think about it, I’m really glad Addie is still even with us. If I really stop and think about it, I live a life that is full of so many blessings.
I learned a lesson awhile ago. A number of years ago Liz’s mom and dad would visit us from out of state quite frequently. Liz’s mom was on dialysis and many times prior to her arrival she would have her fluids shipped to our house. I don’t remember how many boxes there were for each visit but it was a lot and took a lot of trips to bring them into the house. It was always kind of ordeal to get them all brought into the house and they were somewhat heavy. Nothing to complain about but inconvenient for sure. We lost Liz’s mom 5 years ago and what I wouldn’t give to have one more visit with her, for her to see my wife and her grandchildren. I’d carry tens of thousands of boxes to make that happen.
When I think about that, my mind is always drawn back to Addie. There may be a day that we get a full night sleep and that may come because Addie is not with us. When I think that thought, I tell the Lord, “It’s okay, I don’t mind being up. Just keep her here.” I wouldn’t wish my worst enemy to have a child like Addie but I also know we are very fortunate to have this amazing girl. The frustrations, anxiousness, fear, lack of sleep, and inconveniences that come along with Addie’s diagnosis are all worth it because what is the greatest burden in our lives is also the greatest blessing. What emerges from these hardships is a beautiful girl who is crazy, fun loving, and determined to be all she can be with the body she has been given.