I remember when I found out: I was at school, and I’d called my mom just before class started. Something in her voice sounded urgent.
Two words, one diagnosis: Cystic Fibrosis.
My three-month old nephew was now doomed to a fate I’d seen play out in my childhood.
My mind immediately separated into two spheres, one, thinking of my childhood friend, Melissa, who battled the disease and succumbed to it when she was 24, and my sister, thousands of miles away in Germany, tending to a five year-old, a two-year old, and now, a terminally ill infant.
I wanted so badly to call and weep with her. To show up at her house and cook her macaroni and cheese and run my fingers through her hair, to hold her close while wet tears fell between us. We knew what this meant for Walter—we’d watch Melissa live the whole thing. I’d seen the inhalers and nebulizers and hacked up mucus and shortness of breath and the lung transplant and the solidarity of her family and the courage and hope and ultimately, the resignation.
It’s almost a year later and my sister and her family have relocated Stateside, in Spokane. I got to meet Walter for the first time in October, and the little guy is all smiles, and coos and joyful baby love. He doesn’t know he’s sick. He doesn’t know about the football he might not be able to play, the friends who might shun him while he uses his nebulizer, the black tar that might grow and adhere to his lungs. I try not to think about him in his teens or twenties, try not to consider how quickly a cure might progress to let him live to see his forties.
And I cannot, imagine, for the life of me, how my sister wakes up every day, stares into the lake of his blue eyes, and knows that she will likely have to say good-bye to this little love.
It is too much to bear.
So I’m joining her in celebrating Walter’s first (of many, many!) birthday by participating in The Great Strides Walk, a Cystic Fibrosis fundraiser. It’s one of the only things I can give the boy for his birthday that encapsulates the hope I have for him and my sister—the hope of a long, healthy life. Of a cure.
I would LOVE to raise at least $350 to “gift” to this little one, and I wondered if you would help me. I am asking for a $10 donation from each of my friends (and I think I have more than 35 of you!!) You can go here to donate to Walk for Walter.
The addendum to the song “Happy Birthday” says, “and many more.” This is my way of ensuring many more for Little Walter. Because who can imagine a face like this vanishing before its time?
Thanks for helping me celebrate my nephew’s birthday.