I remember the first time Isla skinned a knee. She fell, she was a little banged up, and there were tears. I patched her up and she kept going, but even though there was nothing I could do to prevent it – skinned knees happen! – I felt terrible. We hate to see our children get hurt and we feel guilty when it happens. We feel helpless when we can’t protect them from everything.
When Jude died… we feel guilty when something happens. I ran through that day, that week, a thousand times and another thousand times and another, trying to figure out what the hell had happened and why he was gone. Why a kid with a low-grade fever went from giggling to dead during an afternoon nap. I asked questions over and over, and every doctor, every nurse, our coroner, all told me the same thing. They couldn’t find anything wrong with him, so I couldn’t possibly have predicted or prevented what happened. I was relieved to know I wasn’t at fault. But I felt helpless knowing that my child died for no apparent reason, helpless to know how to use that information to protect my other two children.
A year ago today my phone rang and the name on the caller ID stopped me in my tracks. It was Jude’s coroner, and this call was coming months earlier than we’d expected it to. There are two stages to an autopsy. The first is completed within the first couple days, and the second is the pathology report, which we’d been told to expect after four to six months. At that time, it was explained that based on the initial findings, it was most likely that the pathology would return an inconclusive report. Jude was perfect and they could see no indication of any issues. Alternatively, they thought they might find some obscure genetic abnormality that could explain what had happened, and ‘then we could test the other kids to see if there was something to watch for’. (Let’s not talk about how terrifying *that* possibility was while we sat and waited, wondering if our children were ticking time bombs.)
But there was an answer. A confusing, frustrating, preventable one. As we know now, Jude had died from influenza B. Did you know that the flu can stop a perfectly healthy heart from beating, with no underlying conditions? I didn’t. A thousand questions, thoughts, and emotions ripped through my heart and my head in those first few moments after the coroner delivered the news, and kindly, patiently talked me through what I was learning and answered my questions for me. He repeated when I asked him to, because my hearing had gone fuzzy. We talked about whether Jude had been vaccinated (he had) and how we know that the flu shot isn’t 100% effective, but it is fortunately very rare for someone to die after having had their flu shot, even if they still get sick. Jude had the terrible luck of being in that small number of vaccinated people who lose their lives. He was healthy, but high risk because of his age, and his tiny body wasn’t strong enough to withstand the effects of influenza.
After hanging up the phone, the first emotion was rage. The anger that hadn’t come in the previous three and a half months of hazy confusion suddenly rushed in, and I felt a level of emotion I’d never experienced before. I had the physical urge to rip my hair out of my head, because that was the only thing that made sense in that moment. When that anger started to subside, I was left again with a feeling of helplessness. I’d done everything I could to protect my kids, and it wasn’t enough. He just died anyway, and from a preventable disease. Something we know how to protect ourselves from, something we know how to protect each other from. As a community, we’d failed him, and he was gone because even with everything we know about public health, we’re not always very good at it. He’d died from a preventable disease, and with all of the rhetoric and misinformation about vaccines, I didn’t know how to make it better. I didn’t know how to change the status quo so this wouldn’t happen to more people.
As we started researching and speaking with experts so that we could answer our own questions and properly discuss the results with friends and family as we started to share what we’d learned, I kept thinking how just one more flu shot in my community, or one person staying home sick, or one person keeping their kid with a fever home from school, one more person washing their hands after sneezing, any one of these things might have been the one thing that could have stopped the flu from ever reaching our home. Just one better choice could have broken the chain and protected Jude and prevented illness for a lot of people.
You know that story about the starfish? There are a lot of versions, but it appears to originate with Loren Eiseley. A man is walking down the beach and sees another man throwing starfish back in the ocean. When the first man asks the second why, he explains that the tide is out and if he doesn’t throw the starfish back in, they’ll die. The first man points out that the beach is filled with starfish and he can’t possibly make a difference, and the second tells him that it does for that one.
Approximately 3500 Canadians and 36,000 Americans are dying from the flu every year. People don’t like flu shots, and people don’t want to miss work or keep their kids out of school, and that’s a hard thing to change on such a wide scale. I can’t convince all of North America to change their minds on flu prevention, but maybe with some respectful, fact based conversations, maybe we can help people learn to view public health differently. We aren’t going to save all 3500 or 36,000, but what if we can share information that will save one of them? What if another family can keep their mom or grandparent or tiny boy in puppy boots? Not helpless. Not powerless. We can’t do everything, but we can take action that can make a life or death difference for our own families and all those in our communities.
A year ago I woke up still not knowing why Jude had died. Today I woke up having launched a public health awareness campaign that got people talking, got people considering how they can better protect themselves and everyone they come in contact with. Today I woke up after a year of conversations with doctors, researchers, politicians, and media. It’s the kind of thing that’s impossible to measure. We’ll never know who didn’t get the flu because of the work we’re doing, but feeling Jude’s tangible absence in our home, it feels worth it to try whatever we can to prevent this for someone else.
Ordinary people like us might not be able to change the whole world, and in days like these where the news is constantly terrible and terrifying, it’s easy to feel overwhelmed. Helpless. Powerless. But we do have the ability to take small actions that can have a positive impact.
We speak often around here about how we can make life better for someone else, because what else is there? Now that Jude is gone, there’s nothing else we can do for him but remember him and love him and try to do good work in his name, knowing he’s no longer here to do his own good work. Here’s a quick list of some of our favourite organizations if you’re looking for inspiration, but let’s talk a little more about it. What can you do this week for someone?
- Donate to a good cause. Sometimes this can seem overwhelming, because donations can add up fast. But turn that around – you don’t have to donate a lot because donations can add up fast. Giving $100 is awesome! But if you don’t have $100, $5 still makes a difference. $5 helps more than $0. Your spare change in a donation box on a counter? That adds up. While I was a student at Laurier I spent two years working on the Shinerama executive, raising money for Cystic Fibrosis. The most significant portion of what we raised came from change. If you can spare it, lighten your wallet a little. It adds up and saves lives.
- Take a walk! Or run! Or cycle! And do it for an organization that speaks to you. Are you a distance runner? Check out Team in Training to support the Leukemia and Lymphoma Society of Canada. How about the Heart & Stroke Big Bike? Or if you’d just like to support someone doing one of these things, good friends of mine are continuing their annual participation in Ovarian Cancer Canada’s Walk of Hope in memory of their friend. Keep an eye on your social media and when your friends are doing things like this, support them when you can.
- Give blood. I recommend this one a lot, because it’s something almost all of us can do and we don’t need to spend any money. There’s a need for all blood types, and especially O- (universal donor, anyone can receive blood from O-). All you need is about an hour to sit and when you’re done they give you cookies and juice. You can even nap. Save someone’s life and nap at the same time? This is a great thing to do.
- Register for bone marrow and stem cell donation in Canada. This is leukemia mention #2. We lost a very important family member to leukemia almost seven years ago. We lost some of our glue. Get on this list – you might save someone’s life.
- Register for organ donation. Already a donor? You can confirm here whether you’re on the list! Go check it out. We don’t need our organs after we’ve died, but there are people here whose lives we can save, even after we’re gone.
- Donate gently worn clothing that you no longer need. Have a winter coat in good condition that you won’t be using this year? Cooler weather is around the corner and you can keep someone warm.
- Get a flu shot. Get all your shots! Maybe you’re a perfectly healthy adult who can recover easily from vaccine-preventable diseases. But what about the woman next to you on the subway? What about the kid in front of you in line at the store? What about your coworkers? What if they get sick and their bodies can’t fight it? What if they take it home to someone who is in a high risk category? Your flu shot isn’t just for you. It’s for everyone in your community.
- Speak up. Reach out to your elected representatives if there’s something happening they might be able to help with. They’re very busy people, but you might be surprised at how available they can be when you need them. To get started, find your Member of Parliament here.
We are not powerless. We might not be able to take on all the world’s problems ourselves, but we can do small things that will change things for one person or a few people. What happens if we all step up and do one thing to make things a little better? We can’t save all the starfish, but we can make a difference for that one.