Life Goes On

Dear Emmersyn,

In an instant, my world stood still. It was as if my heart stopped beating, my lungs stopped breathing. I sat in the midst of the busy dialysis clinic listening to the message from NeuroOncology over and over telling me that you have a lesion in your brain stem that may be causing you to choke and drool excessively. On top of this, you now have 3 probable plexiform tumors in your tiny little body. One in your back, right leg, and neck. This news is devastating to your father and I, and although I promised your brothers not to keep secrets when it comes to you, I cannot bring myself to tell them this update. While our world stood still, and our lives have been rocked, the rest of the world goes on as if nothing has happened. We go to work and you to preschool as if nothing has changed. Our schedule remains the same and packed full of basketball practices/games, soccer training, swim classes, and homework. Our family is the same, our home is unchanged, but something seems so different now. I know this feeling. I have felt this sense of utter shock multiple times since your were diagnosed with Neurofibromatosis type 1 over 1 year ago on Jan 13, 2014.  I should be accustomed to it by now, but maybe one never grows accustomed to hearing such news.

I pass people at the grocery store and smile politely despite being a mess inside. I participate in small talk with the other parents in our parent-tot swim class or the other spectators of your brothers basketball game. Talking about swimming suits, basketball shoes, and schedules. As if any of those things really matter. Its almost like a form of punishment at times to have to continue on with life as usually despite being so shaken.

But then you smile and giggle at something your brothers have done. Your scream in excitement to watch Frozen for the 10 billionth time, and sing along with all the songs in your sweet little voice. You shine in swim class and prove that despite all of the new things we heard at your latest appointments, you continue to thrive and achieve new skills. I am reminded that even though this news is concerning and shocking, our family remains the same and our home in unchanged. Our love for you has not changed. And most importantly, YOU are unchanged. You are the same sweet, compassionate soul you have always been and will continue to be despite what new obstacles are thrown in front of you. You continue to show me how to find the light in the darkness, and the beautiful calm in the midst of the storm. Life goes on. You may have more challenges than we initially thought, but you remain full of LIFE. We have no time to wallow in self pity, because LIFE GOES ON. And by God are we going to live it.

Love you always
Mommy