I feel like I am living a lie. Like everything that people see and believe about me is not true. People comment every day on how “brave” I am and how “strong” I am and “what an inspiration” I am to them for handling our struggles so gracefully with Maddux’s health. They see me smile, they watch me show up to work and they observe how I get through the day without breaking down and they think I’m some sort of a super hero. The truth is, it’s completely eating me alive. The honest-to-God truth is, I don’t know how we are holding it all together. I really don’t know how my husband Joe and I are managing to keep it all together and still love each other at the end of the day. “For better or for worse” are words we live and breathe.
What I do know is this… when you are faced with adversity, especially when it comes to your own child, you just do what needs to be done. You put on your brave face (most of the time) and you power through it. That’s not to say that I’m not allowed my own grieving period. It just plain sucks that I can’t put on the Christmas PJ’s that I bought 3 months ago for my child because it interferes with his PICC line or the 10 monitors that he’s hooked up to. Or that I can’t take him outside to watch Santa and Mrs. Claus drive through our neighborhood this year because he is confined to a hospital crib. I can’t hold him and love on him the way I want to because of the external drainage tubes coming from his brain. Sometimes I don’t even feel like he is my own child. Out of the 15 months he’s been on this earth, we’ve gotten to enjoy only 5 of those free from oxygen tanks and nasal cannulae and not having to worry about cerebral spinal fluid leaking out of the incision from one of this many brain surgeries.
The truth is, Maddux needs me to put on my happy face. He needs his daddy to make him smile throughout all of this. I truly believe it’s what keeps him going. He needs his Grammy, his grandpa, his aunties, his uncles, his cousins, his friends, his extended family… he needs all of us to be strong for him and to make him laugh that laughter we all love so much.
It’s not easy watching your child go through his 8th surgery (6th brain surgery), countless MRIs, CT scans, ultrasounds, etc. I break down every single time they wheel my baby back for surgery and I don’t ever see that ending until he no longer has to face another operating room…