I’m sitting here, sipping coffee, watching a waiting room full of people anxiously awaiting news about their loved ones who are upstairs in the operating room. A year ago, I wouldn’t have had the faintest idea of what that feels like. Everyone in my family has always been relatively healthy. Those circumstances always made me feel blessed, and maybe a little cocky that I had made it this far in life with both of my parents alive, two healthy pregnancies, two healthy babies, and even my own health. I’d like to think I’m a compassionate and empathetic person, so perhaps it’s human nature to feel relief that it’s not our loved one, or to feel “lucky that’s not us.” I’d like to think this wasn’t something that I took for granted, but if I’m honest, it wasn’t something that was on the front of my mind, daily. I forgot to be humbly grateful for my health. For my kid’s health. For my parents. It’s that ignorance I’ve talked about before, that we all seem to fall for time and time again. When everything is going well, the what ifs, the worst case scenarios are not even at the front of your mind. You live each day with an unspoken thought that bad things happen to other people. Until they happen to you, and you’re not prepared, because you’re ignorant, and that ignorance robs you of your humbleness. You feel cheated; life’s not fair. “Why me?” You might ask…well, why everyone else? All I have to do is log on to Facebook to get a healthy dose of reality, and I’m quickly reminded to have humility and empathy, even when I’m hurting. When you are run down and broken, yet can still manage to show love and kindness to others, isn’t that the pure definition of empathy? There are so many kiddos with this illness who have not been as lucky as Maddi has, and even though she’s not 100%, she is still worlds better than she was. I have spent many moments over the last several months feeling sorry for myself. Feeling sorry for Maddi. This isn’t fair. We didn’t ask for this. She didn’t ask for this. This illness has helped me connect with so many parents and caregivers who feel exactly the way Jason and I do, and Ive had the blessing to read their stories, pray for them, share encouragement, and even just commiserate. Their stories of courage and strength encourage me to hang on, and in those moments where I feel like this burden is too much to carry, too much to bare, I think of those battling this disease, and those with stories that are much more severe than Maddi’s, and I know we can get through this. After all, God chose me to be her Mommy. I was given this AMAZING little girl to love and protect, and even though I may go a bit overboard sometimes with the loving and protecting, I know she’s going to be ok.
As I look at all these people, sitting around me anxiously awaiting news, I feel humble. I feel overwhelmed with blessings. My baby will live. She will grow. She will fight. I don’t feel sorry this has happened to her, but feel encouraged that this story will help her to grow a character of substance, and in turn help others to heal and feel strength in this illness. I feel faithful that this experience will cement great changes within me and Jason, and give us strong spirits to handle whatever life throws at us going forward. I say a prayer for all of those sitting around me, that through their fear and worry they might find comfort and clarity.
Thank you to all who read about my beautiful girl. Please continue to share this blog to help spread awareness for Anti-NMDA Encephalitis.