It came on slowly, back in May; stress would bring on stomach pain, and it could take hours for her to recover. By last week, my once willowy elderchild had lost 20% of her body weight; she was starving, but she said that she was afraid to eat, because it hurt her. And her doctors agreed: it was time to get some cameras in there, to see if we could figure out what the hell was going on.
It was still dark when we arrived at the hospital this morning. It was bright when we left. It didn’t seem fair.
There are worse things to hear, I know. But when a doctor has to make it a point of turning you away from the bed to tell you that your daughter will still be able to have children, and lead a normal life, and then starts her next sentence with “but…” it’s time to accept the fact that things have changed forever.
The tentative diagnosis is an autoimmune disease; it has a name, and its own foundation. Her medical team is sure enough for now to be putting her on pills, and seem carelessly unaware of how much pain they’re threatening her with when they suggest she can begin taking them four times a day, with food, right away. And although we’ve been told that she’ll be able to manage her condition with a combination of careful dietary habits and medication, if the doctor confirms her initial diagnosis when test results return on Wednesday, my daughter will spend the rest of her life teetering on the edge of pain.
My first child has been lucky enough to live to her eleventh year experiencing personal illness as a temporary state; in her heart and mind, there’s always been time and tides, Mama and medicine to make things better. Now, I see the growing realization in her eyes when she asks for a sandwich, and we suggest soup. I see the way the horror rises, and is quickly swallowed, so it does not come out to haunt her.
I am proud of how brave she has been today, and how prescient. My daughter is like me: we seek to understand the world, and we come to our realizations quickly. Rough seas sparkle on the horizon, and she can see them, too. But like any parent who discovers that their child will be forever hurt, I’m hurt, too.
We give so much to our children. We ply them with care and attention; thoughtful answers; gentleness; structure. We model and talk about the values that are important to us, so that they might develop generosity, curiosity, an appreciation for beauty and joy. We give them the safety of our homes and bodies, and the promise of bottomless, enduring, unconditional love.
But solace is not succor; bad things happen to good people, and there are some things we cannot give. And so I practice the gift of withholding, saving my tears for the other side of the doors and walls that keep me from her side.
I will never again tell her that everything will be all right. But together, we will find other ways to soothe. I will carry her forever. And we will soldier on, determined and courageous, our fingers entwined, and our heads held high.
Everybody Hurts: A Cover Lay Down Mix [zip!]
- Shawn Colvin: Say A Little Prayer (orig. Greg Brown) 
- Jill Sobule: Don’t Let Us Get Sick (orig. Warren Zevon) 
- Ben Harper: The Drugs Don’t Work (orig. The Verve) 
- Holly Figueroa O’Reilly: Everybody Hurts (orig. REM) 
- Reel & Soul Association: Lean On Me (orig. Bill Withers) 
- Dension Witmer: Comfort You (orig. Van Morrison) 
- Matthew Mayfield: Fix You (orig. Coldplay) 
- Rosie Thomas: Songbird (orig. Fleetwood Mac) 
- Lori McKenna: Mercy Now (orig. Mary Gauthier) 
- Richard Shindell: Mercy Street (orig. Peter Gabriel) 
- Lori Lieberman: Nobody’s Crying (orig. Patty Griffin) 
- Clem Snide: Closer To Fine (orig. Indigo Girls) 
- Red Horse: Sanctuary (orig. Eliza Gilkyson) 
- The Wailin’ Jennys: Bright Morning Stars (trad.)