While you are waiting for an agency to call and say you have been chosen to be a miracle’s parent, you sit back and wonder about what that phone call will feel like. When you are pregnant, you worry about what labor will feel like. When you are moving, you look at new houses, find local places you want to visit, and plan what life will be like there. You have a decent picture of what you life will resemble when you set your roots down there, but you won’t know what it’s like to truly live there until it happens. We were over the moon thrilled when that phone rang, and we became Braden’s parents. It was as if the world stood still and I was going burst from the inside with such overwhelming joy. We were so thankful that our fertility treatments were successful and brought us his sisters. Of course, I fretted about what labor would be like, but I knew that life would be sweeter afterwards and pushed through. My heart soared as our dreams came true. Watching Braden hold his sister, Genevieve, was such a life altering moment. Watching him with his youngest sister is even sweeter as he sings her sweet lullabies and dotes on her. In so many ways, life gives us much more than we can ever expect, and no matter what they say, sometimes more than we can handle.
I could never have anticipated what it would feel like to sit in that small room and be told my child has a terminal medical condition. I could never have known how it would feel to drown on dry land. I could never have known what it felt like to crumble in the inside while remaining strong and sturdy on the outside. I have a pretty good idea of what A-T is going to bring in our future. Yet as we reach each milestone, I realize more and more that knowing and experiencing these things are two very different things. I find myself this week in that weird space where those things I imagined happening are happening. My expectations are colliding with reality, and it can only be described as a bit traumatic and heart breaking. There is no being over dramatic where this medical condition is concerned. While it may not be made for tv kind of drama, the condition is always causing moments that are significant in their own rite.
Braden’s immune system has worsened over the past month. It’s a noticeable change. Where a cold just used to be a cold, now it can also be a cold that morphs into a moment where we are delivering chest physical therapy, administering a rescue inhaler, and coughing until we vomit. Dealing with this once in a lifetime would be scary enough, but dealing with it for a week straight was overwhelming. The storm has settled now, but I now know how that storms feels. I also know I prefer calmer seas as my vessel was shook so violently that I too felt a touch green.
This week also brought about another imagined and expected conversation with Braden’s sister. Braden has begun riding the bus again. As he boarded the bus, she ran into the kitchen jumping up and down exclaiming, “Mommy! Mommy! Look! Braden is riding the bus! That means he’s not sick any more!” My heart sunk, my heart began racing, a lump formed in my throat, and my eyes involuntarily started welling. I had to explain to my daughter that my son will always be sick. Saying those words out loud hurt so very much. I don’t wear waterproof mascara on purpose. That means I have to hold it together or face looking like I am preparing early for Halloween. I had imagined this happening, but again you just never know how it’s going to feel until it happens. I knew it was going to be hard, but I didn’t realized just how wretched it would be. I know that this is going to only become a harder and harder conversation. I am not prepared. I am soooo not prepared. Now I know for certain that there is absolutely without a doubt no way to prepare for anything that A-T sends our way. Nope. The only way to handle it is one small step at a time. You just have to take deep breaths and do it. It is what it is.