Never Safe

To be honest I don’t have too much to say this week. I’m feeling a bit run down and worn out. While everything seemingly is going okay, a little bit of doubt has crept in. I suppose I’m just frustrated.

It was another scary weekend here in our household. Maddie unfortunately had her second seizure in the matter of a few weeks. While the first seizure had an origin unknown, this second seizure seemingly was caused by constipation.

This is one of the more frustrating things about Angelman Syndrome. It seems like just as soon as we get Maddie’s health in order, something new pops up. When it comes to Maddie’s health, the little things can truly become something dangerous and scary.

As you can probably imagine, this can cause some anxious days and nights. While Maddie is back to her normal self as of today, is this our new normal? I feel like we’re doing everything in our power to make sure that Maddie is safe and healthy, but at times it doesn’t seem like enough. It feels like she is never safe.

It’s frustrating and scary. Our daughter has such a sweet personality, with a little bit of a mischievous side as well. It just doesn’t seem fair that she has to go through everything that she goes through.

This doesn’t mean that we’ll give up. We’ll continue to fight and find solutions to the problems Maddie is having. We’ll continue to provide a safe and loving environment. We’ll continue to monitor Maddie and get ahead of any issue that may arise. I just wish it wasn’t so damn hard sometimes.

-Written by Adam Birchmeier