How hard was your day today?
Mine was tiring. I was up early wrestling with my daughter about finishing the homework she didn’t get to last night. My son refused to brush his teeth and I yelled at him about it. I had an important meeting at work that didn’t go as well as I’d hoped. I rushed home only to realise I had no bread for toast in the morning. And I didn’t get time to go to the gym.
Hear that? That’s the sound of a million tiny violins playing along to my privileged, first-world whinging.
Because you know what else happened today? I met Sue Channon. She is also a busy mother. But Sue would give anything to be stressing about homework and toothbrush troubles and a slowly-expanding waistline.
Sue has real problems.
She has five children, aged between eight and 25.
Two of them have autism. One of them, her youngest, Lauren, has a chronic health condition that keeps her in hospital for weeks and months at a time. She is eight years old, and she has already endured 118 operations in her short life.
Listen to Sue talk about what she wishes everyone knew about families like hers, here.
Last year, Lauren spent 28 weeks in hospital. And since Sue doesn’t leave her daughter’s side when she’s in there, that means Sue did, too. Sue sleeps on a pull-out cot bed next to Lauren’s and knows which wards have the old, lumpy ones that punish her back. She eats frozen meals brought from home and waits for a visitor to relieve her before she can go for a shower or a toilet break.
“The shower is my friend. It’s the one place I can cry and scream and wash it all away,” she says. “Luckily at Sydney Kids’ the parents’ showers back on to the kitchen with big heavy whirring fridges… you can scream in there and no-one can hear you.”
Sue, Lauren, and their family. (Image: supplied.)
Boredom and negativity are the enemies, both for her and Lauren. But for Lauren, there is also extreme physical pain.
Sue says that the Starlight Captains at Sydney Children's Hospital are the ones who keep her daughter sane. "They allow Lauren to be a little girl. They'll come and do makeovers and paint her nails..." The Starlight Room, says Sue, is a haven for Lauren where doctors can't go, where no-one is talking to her about procedures and pain management, no-one is trying to administer one of the many painful procedures she has to undergo every day.
Lauren with Captain Rainbow, a Starlight Captain. (Image: supplied.)
Back at home, money is tight and Sue's husband is doing his best to get three kids - two with special needs - off to school and care. The freezer is always full and there are enough uniforms to get him through the week without a wash, but last year, two of Sue and Andrew's other children got sick, needing complex and dangerous brain operations. He had to take five months off. Sue hasn't been able to work since Lauren was born.
"It's going to take us years to catch up," she says.
If you are reading this and feeling terrible, stop. Sue doesn't want or need our pity. What Sue - and many, many other parents like her - want is practical help. From friends and acquaintances, she wants action - hospital visits to relieve the boredom and provide a chance to wash her hair, frozen meals, a gift of dry shampoo or some sparkly polish for Lauren. What she wants from the rest of us is to help support organisations like the Starlight Foundation who allow kids like Lauren to still smile and laugh and remember they're a child. That's what she wants.
That, and maybe to appreciate that - if you are not sitting by a hospital bed today - you are lucky.
Sue and Lauren. (Image: supplied.)
"The more troubled your life becomes," says Sue, "the less comfortable the school mum friends are about inviting you to things. Because they feel they can't whinge about their lives if you're there."
That's precisely how I felt after meeting Sue.
Every time I asked her a question about herself, about how she coped, she deflected it back to her children. "I have very little time," she says. "So if I'm at the hospital with Lauren, maybe it's only a phone call at the start or the end of the school day to let [the others] know that I am thinking of them. Maybe it's a letter posted from hospital, or a friend I've asked to cook their favourite dinner. They lose their mum for a long time. I just want to make sure my children feel loved."
How hard was your day today?
Listen to the full interview of I Don't Know How She Does It with Sue Channon, here:
For more episodes of I Don't Know How She Does It, find us on iTunes, on The Mamamia Podcast App (iOS only), or on your favourite podcast app.
You can donate to the Starlight Foundation, here.
You can follow Holly on Facebook, here.
Top Comments
I still don't see anything wrong with asking "is there anything I can do?"...people on the outside have no idea how to help so asking that just lets the sick person or carer know that you're there if you need anything....if I say "let me know if i can do anything?" I mean it let me know if I can help in anyway ...what i'm really saying is i'm here for you...you are not alone.
What's wrong with asking what you can do to help. Just be honest and ask for what you need. A school run for the others kids the bathroom cleaned a meal a break from the bedside. Often people dont know what to do unless you tell them.
But it is hard to ask over and over. You begin to feel like a burden. People are happy to help in the short term, but very few are in it for the long haul. I have been chronically ill my whole life. I've had hundreds of hospital stays, some for months at a time. It is torture being away from your friends and family, let alone having to stay in a bed or attached to medical equipment. Distraction from people like The Starlight Foundation usually only happens once or twice a day for a few hours, if there are volunteers available. Many hospitals don't have Starlight volunteers at all. Boredom can lead to depression, and depression can make sick people even sicker. And it's incredibly hard on the families too. Often, the last thing they want to do is ask for more help. Again. Not only are they exhausted, and probably can't even think of what they need, but their last priority is often themselves. So just do it. Don't ask. Just visit and offer adult conversation. Just take them a coffee. Just drop over to their place and do a load of washing. It's those little everyday things that get forgotten and put aside as nonessential. When in reality, these little things are what keeps the cogs turning. Tell them you need to sit for a while, and tell them to go and have some alone time while you get to sit and keep the ill child company. Make them feel like they're not a burden and they're doing you a favor by going.
My autistic daughter is going in for surgery on Friday. I'm terrified for her, but, all things going well. I'll be able to take her home the following day. I can't imagine how my parents must have felt having me in hospital so often. Not knowing when I was going to be able to come home. I can only hope that there are people out there who will read this woman's story and act next time a friend or family member has a child fall seriously ill. So that no child will have to feel so sad and alone while being so sick. And no parent or guardian will have to feel so helpless and trapped in such a scary situation.