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
Tell everybody
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
Imperfect Happiness 
It is hard when you have a child in the hospital. My first was in the NICU for 9 days and I have to admit I didn’t want visitors or to talk to anyone unless I initiated the conversations/phone calls. Everyone is different in what they need. There is no one right thing to do or way to behave.
I think if I had a child in the hospital now I would still feel the same way, 18 years later! A close friend whose daughter was the same age as my son got cancer two years ago. We asked the family how we could best help them, giving them some ideas of ways we knew we could help. They took us up on the weekly cutting of their lawn and we did it for 5 months. I know the dad was a lawn fanatic and we surely did not do it as well as he did but it helped them to go home to a cared for outdoor environment.
I guess long story short is if you feel comfortable send them an email or call (you know what way they like to communicate) and see what kinds of help they would take. Listening, food, a service, a playdate for their other child, etc…. Everyone needs and wants different things and there are so many ways to show you care.
BTW, their daughter is heading to college in the fall and my son is also fine :).
CathyT
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Having had two long hospitalizations with my son, I’ll tell you some things that helped (or would have helped) us.
Hospitalizations are very difficult on a family, whether they seem to have it together or not. One of the things I appreciated very most was when people offered to bring me a meal to the hospital. Cafeteria food is sketchy at best, and is expensive when you’re eating there 3 meals a day. The first time my boy was in the hospital, I had two or three friends bring me food and meet me in the cafeteria during shift change when I wasn’t allowed to be in the ICU, and it was fabulous. Even more fabulous was when they sat and talked with me about things that didn’t involve the hospital. I had another friend who ordered and paid for sandwiches and soup to be delivered and then called and told me it would be at the front desk at 6:00.
One friend, who I didn’t even know that well, put together a care package of sorts. It had a few munchies in it, along with a couple of light reading magazines like “People” or “Reader’s Digest.” Just things to help pass the time that didn’t take a lot of concentration,
It was really easy for the pressures of every day life to get to us too. Little things like offering to shuttle our kids, or do a load of laundry, or offering to take our other kids somewhere fun for a few hours would have been wonderful.
Visitors were wonderful. I didn’t necessarily need someone to come and ask a lot of questions, or expect me to cry on their shoulder, but having someone there to talk about normal, everyday things, or just to sit with me so that I didn’t feel so isolated was wonderful.
And rest assured, that if this was something you ever had to face, you would find the strength, even if it seems unimaginable right now.
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I agree, you don’t need to physically do anything, but a simple note or verbal communication to let people know you care is very heart warming.
Recently I spent 2 weeks in hospital with my daughter and no one in my family called me, ok they sent emails, but I didn’t have access to that in a hospital and though we coped on a day to day basis, I felt very isolated and disappointed. A couple of very dear friends more than made up for it, but I realise the lesson was actually for me, to make sure that no one close to me ever has to experience what that felt like, no matter what might stand between us. Small gestures generate great comfort.
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Beautiful post, C. I certainly identify with this. I don’t know what to do around grief and loss for others. I run through a similar thought process whenever someone I’m connected to are going through something.
I can tell you that when I lost my daughter, the people who wrote a note, made a meal, hugged me or simply told me they cared were a boon to me. I didn’t need anyone to make it better or rescue me from what we were going through (although at the time, I sometimes falsely wished for things like that.)
Everyone reacts to loss differently and I can’t claim to speak for anyone else, except to say, just as you’ve experienced your own losses in your life, that grief can be incredibly isolating. Just knowing that someone is thinking of you helps you know you’re not alone.
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