One of my first despairing cries when the kindly young doctor told us of Rees' CF was, Oh dear God, my baby's going to die. Indeed, it was all I could think of those first foggy days, weeks, and months (Maybe even a year but I'm not sure I remember now.). My baby's going to die. My baby's going to die. My baby . . .
And then he wasn't a baby any more. He grew into a toddler like any other toddler. He swallowed his enzyme-laden applesauce before snacks and meals. He yelled, NO, NO, NO with all his might. He watched Little Bear while being clapped. He ran away from me naked and peed on the floor. He occasionally was hospitalized with IVs. He learned colors, letters, Mama, Daddy. He was cute. He was naughty. He did need extra care to be healthy, but he certainly wasn't dead.
So slowly, I realized that I'd grown from merely giving intellectual assent to such ideals as
Each day is a gift.
No one is guaranteed tomorrow.
Viruses and car wrecks and accidents cause death, too.
Now I understood in my soul and I lived differently. Finer. Richer. Deeper. We had more babies and had more fun with them. We saved less money and went out for more pizza. It takes troubles to realize these truths but I am positive that people live more graciously with this knowing and that the world is a more excellent place with such understanding sorts.
Does this mean that I take my wisdom and float along with my smiles and tears, content in suffering? H***, No. I write letters requesting research monies. I volunteer at fund raising events. I sign up for walks and drug studies and surveys and questionnaires. I talk. Oh yes, I talk. Love to talk!
We're all going to die, you know. One way or another, CF or something else, our time here on our beautiful, fallen earth will be up. I want to hear Well Done. . . I want my children to hear Well Done. . . I want my boy with CF to hear Well Done . . .