I cry for me.
I wear my smile like a garment. I take it off each night and carefully fold it up, setting it beside my bed. I gently pack it into its box. I wake and lift the lid to check and see if it’s still there. Every day it is. I rise, smooth it out, repair the fraying edges and put it on again every morning. In the solace of the evening I allow myself to feel the weight of my empty arms. To acknowledge the burden of a heart that will never numb. To choke with each rise and fall of my chest in every breath I take. And to smear mascara across my wet cheeks when I blot my eyes. But all day long, I smile.
I cry for me.
Because I miss you. Because I love you. Because you’re not here with me, and you never will be again.
In two weeks I’ll be at a conference with most of the children like you who exist in this country. Families like ours. Mothers, fathers, children all around who live the life I live. I will wear my smile. I will carry my head high. My clothes, my fingernails, my hair, my eyelashes will be perfect. I will look “put together”. I will both laugh and lament. I will both console and commiserate. I will not hold those children. I will be offered the chance to do so with each and every one passed around by mothers who are proud, or worried, or hurting, or desperate to connect who will speak to me and offer but I will not hold their children. I am scared. It hurts too much. I know my limits. It is the only time my smile would break.
And I would cry for me, because of you.
I cannot let that happen. I have to be very careful with my smile. I have to wear it every day.
The 37th Annual NTSAD Family Conference will be held April 16-19, 2015 in Reston, Virginia. Families will gather from all across the USA and beyond to learn about research, support one another, grieve together, and just to be with those who truly understand what living life with a terminally ill child means, no explanations or apologies necessary. To learn more, visit: http://www.ntsad.org