One year ago today

One year ago today we asked you to join us in a conversation that we’d been quietly having in our own home, with doctors, with experts, since a phone call that knocked us off our feet only eight weeks earlier.

For months people had been asking for more information, looking for details, trying to figure out why Jude had died, what had happened in our home that wasn’t happening in their homes, what they could do to protect their kids from whatever had taken Jude from us. In those earlier months the questions had often felt prying and shaming, as though we’d failed him as parents and he was gone because we hadn’t done enough for him. And the questions didn’t stop. And people with children his age would repeat their questions, push harder, look for reassurance that they were doing everything right where we’d done something wrong. But for almost four months we just didn’t have an answer.

When the call came we finally knew what had happened, but we sat on it as we figured it out. Influenza B? He died from the flu? We waded through our own sea of brand new questions as we tried to reconcile the diagnosis with what we’d known about the flu and what we hadn’t known, and the reality of the day that Jude died without warning. We quickly learned that while we were relatively well informed before, there was a lot that we just didn’t realize about how serious the flu could be even for healthy individuals, and we had no idea that so many people lose their lives each year.

But we knew that this wouldn’t be a popular conversation. We knew that vaccines in general can be a tricky topic, and the flu shot in particular turns people off in a way that other vaccines don’t. We knew that there would be people in our lives who would likely be angry with us for speaking out about this, and we might lose friends and family over it.

We knew that this is what killed our son and we knew that we owed it to him to tell his story, and we owe it to whoever will listen to help them protect themselves and their families and communities, so that they won’t end up like us. So that they won’t be the reason someone else’s family ends up like us.

One year ago today we asked you to join us, and it has been a wild year. We’ve talked with doctors, infectious disease experts, hospitals, reporters, and politicians – including a world leader. We’ve talked with anyone who will listen. We’ve handed out buttons and flyers and cards with flu prevention tips. We built a website (ta-da!) and figured out Twitter (kind of) (ha!) and we’ve opened up about the darkest day of our lives, embellished with pictures of one of the three cutest children we’ve ever seen. We invited the world into our home and into our worst moments.

We did lose some people, people who had been incredibly supportive of our family right up until we shared Jude’s cause of death. And people came out of the woodwork with their theories.  Some who have questioned the diagnosis, the coroner’s report, Jude’s health, whether he died from the flu shot (nope) or vitamin C deficiency (sorry!) or if I’d murdered him and was using the flu to cover my crimes (……). But while this campaign has brought out the darkest, ugliest things I’ve seen from some people, it’s also brought out the very best from others. People who have come out of nowhere with support, taking information to their doctors’ offices and schools and to anyone who would listen. People who have become advocates in person and online. People who have proudly shared their flu shots and their families’ flu shots, and reached out to others in their community to do the same.

And there have been far, far more good conversations than ugly ones. I met with a friend last week and we talked about how tricky it is to get this message out, and the methods we’ve been using so far. He laughed and said, ‘one conversation at a time’. And I laughed because yes, exactly, that’s exactly how it’s playing out. Sometimes the conversation is louder. Sometimes it’s on national TV or the radio or in a major paper, or on Twitter or Facebook. Sometimes I can start talking and dozens or hundreds or thousands or more people will hear me all in one go. Other times, the conversation is smaller. Over a drink at a social event, talking with my kids’ friends’ parents as they ask ‘where’s the other one?’, out on the street on a cold day in early December. In those cases I might only be talking to one person, but that one person might hear what I’m saying and take it to heart. That one person might decide to get their flu shot for the first time this year, or remember to keep their sick kids home from school. That one person might go home and become an advocate on their own, to protect themselves, their family, and their community.

I have a confession for you. I don’t want to talk about the flu, either. I’d rather never talk about the flu shot ever again. I wish I didn’t know a single thing more about them than when to get our family in and what to do if they get sick. But that’s not my reality anymore. This platform, this very unpopular topic that people don’t really want to hear about, it belongs to me and my family now, because it has to belong to someone. And the fewer people who are participating in flu prevention, the more families there are like mine who no longer have the choice to opt out of this conversation. We’re talking about it because we have to. We’re talking about it because the flu stole our child, and we don’t want it to steal one more of anyone’s loved ones. Not your grandparents, your pregnant wives, your uncle with cancer, your cousin with a congenital heart defect, your amazing little two-year-old with a ridiculous lion hat and beloved puppy boots. We will have this conversation that we don’t really want to have as many times as we can if it means that it might prevent one more family from ending up like ours. We’ll never know any direct impact this might have, but it is always worth it to try. We know what the other side of this feels like, and we hope that Jude’s story will reach someone who will make a choice this year that could make the difference for another family. This conversation should belong to no one.

One year ago we asked you to join us. To all of you who have, thank you, from the bottom of our hearts. To everyone who still has questions, we encourage you to have a talk with your doctor to help you make the best medical choices for your family. And to everyone all together, whether you get the flu shot or not every year, these are things we should all be doing to prevent the spread of the flu and other infectious diseases.

From my family to yours, for Jude, for everyone.

 

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