When my daughter was 7 months old, she woke up retching. I felt her forehead and she was red hot. The thermometer told me her temperature was more than 105 degrees. The doctor’s office wasn’t open yet, my husband was already at work. I was alone with her in our apartment. I’d studied Dr. Sears’ The Baby Book cover to cover, so I ran a tepid bath for her and set her inside. As I undressed to get in the tub with her, I looked at her sitting upright, tiny in the bathtub and I thought, “Oh, God. Is this all the time I get to have with her?”
Of course, she was fine. After a dose of Tylenol, a lot of nursing in the bath, and some vigorous rubbing with the wash rag to draw the heat to her skin, her temperature was down three degrees.
I’ve been thinking about this a lot lately.
The daughter of a friend of ours was born with a rare mitochondrial disease that affects her digestive organs. Until she underwent the successful transplant of four of her organs when she was seven, she’d been on IV nutrition for six years. Over the past three years, she’s been in and out of the hospital for various procedures and illnesses, but she was attending school three days a week and basically living a life much closer to a “normal” child’s life than she had before. Then last month she had surgery to remove a malignancy from her abdomen. There were complications and she’s been in the hospital for a few weeks now. She’s doing better than she was, but she’s still not well enough to go home.
Her parents seem to be handling the situation well. They’ve arranged their lives around their daughter’s condition and seem to have quickly moved back into a schedule of juggling who’s going to be at the hospital, who’s going to be working when, and who’s going be home with their other daughter.
I feel helpless in this situation. I want to connect with them to let them know how much I think about them. I want to share some of their pain. As I type that, I know it’s trite and probably isn’t even true. Even that tiny moment I spent looking at my baby’s back as she sat in the tub floored me. I pushed it away because I couldn’t handle the enormity of the thought. What must this little girl’s parents carry with them every single day?
I want to hug them, but I know I’ll cry and then I’ll feel selfish because I worry they’ll feel like they should comfort me. I withdraw, but that doesn’t feel right, either. I feel mute and sad and helpless because I am, because this has nothing to do with me and yet I feel it so much. I can’t help them carry their burden, and I suspect I don’t really want to. I just want to hug my healthy children and go back to complaining about daily hassles rather than ruminating on my children’s fragility.
I’m sure that’s what they’d like to do with their daughter, too.
One of my managers back in my corporate-working days was a sweet man from the mountains of North Carolina who felt deeply and cried readily. He was one of those people I just felt good to know and to count as a friend. I learned when my daughter was about a year old that his teenaged son had been diagnosed with a brain tumor. The disease progressed quickly and his son died not long after. I thought back to a comment he’d posted on my daughter’s birth story about how similar that story was to the story of the birth of his son. Counting back, I realize his son must already have been diagnosed when he wrote that comment. What must he have felt to comment about the birth of his son as he was preparing to say farewell to him? Was it a comfort to him? Did it pain him? Or was it both?
He wrote a beautiful eulogy for his son. I donated to the charity mourners were asked to donate to. I wrote him a note. It was nothing. It was so little and couldn’t even begin to explain how I felt, couldn’t begin to help his family carry this thing. He wrote back thanking me for my words.
There’s not really a point to this post except to express my disappointment in myself and my fear of ever being in these parents’ shoes. I don’t want to make this about me. It’s not at all and yet it feels…I don’t know. It just feels like it’s a part of me in a way.
Last week my kids and I were part of a service project to decorate and stuff goodie bags for the young patients at a local children’s hospital. This isn’t where my friend’s daughter is right now, but I thought of her as I put coloring books and building sets and colored pencils and card games into the bags on which my children had drawn pictures. It’s so little, it hardly seems worthwhile to do. And yet I have to do something. I have to connect in some way.
It just hurts.
From Waiting for a Superman, by Flaming Lips (covered by Iron & Wine)
It’s a good time for Superman
To lift the sun into the sky
Cause it’s getting heavy
Well I thought it was already as heavy as can be
Waiting for Superman
That they should try to
Hold on the best they can
He hasn’t dropped them, forgot them or anything
It’s just too heavy for Superman to lift