One year.
One year ago today our lives changed forever. Jude woke up with a low grade fever and hours later he was dead. Our beautiful, hilarious little boy, with the strawberry blonde rabbit fur hair, giant brown eyes, unbelievable eyelashes (clearly not inherited from me). Never again would we hear his belly laugh or feel his arms wrapped around us or have to put a stop to the ridiculous trouble he was forever causing.
In those first moments my head went through a thousand thoughts. The first half hour was all action and desperation, and slowly, as everyone else took over and the voices got a little quieter, a little less rushed, it sunk in. They couldn’t help him. He was already gone. And this amazing child who had been completely fine through the morning had left us in his sleep, in almost the exact position I’d left him in. He went down for his nap giggling and died.
Those first hours are too much to talk about. All three of our children had very different sets of needs. Jude, waiting on a coroner. Thomas, suddenly fighting a high fever and vomiting. Isla, somewhere in the hospital with her principal and vice-principal, with no idea that any of this had just happened to her family. All of this while trying to contain the news to only the most necessary people until we could get home and deal with it… but the news somehow getting out and a flood of calls, texts, and emails came in from all kinds of people while we were trying to get through the motions to care for our children.
And eventually, somehow, we got out of there. But we left one behind, and we’d never get to hold him in our arms again.
Impossible.
There was sleep, but I don’t know how much, as we took turns sitting up watching Thomas rest. The next day I found that I didn’t have the strength to lift my arms, but figured out how to make breakfast, hug kids, start making arrangements, the worst decisions we’d ever have to make.
“Do we want to bury him or cremate him?”
“No.”
We planned a funeral. We got Isla to school. We went back to work. We breathed, somehow, though every day felt awful and sad, and the idea of hundreds and thousands more of those ahead of us was incredibly unappealing. How were we supposed to get through this without Jude? How were we supposed to do anything ever again? But we did. Not out of strength, but necessity. We packed lunches and got on the GO Train and walked to the school bus and coached t-ball because there was simply nothing else to do. One foot in front of the other. Focus on the individual steps, instead of the big picture.
In those first months we were still in a daze, not knowing or understanding what had happened to our child. He was fine and then he was dead. Alive and laughing, then still and breathless. And no one could tell us why or help us wrap our heads around it. Overwhelming support poured in from everywhere, along with invasive questions from people who didn’t believe that we didn’t know more. Who believed we must have done something wrong that they were doing right. Who needed us to tell them what really happened because they needed us to comfort them and tell them that their children would be fine. Who just needed there to be more to the story. But there wasn’t, and those questions made us question over and over if there was something we’d missed, adding doubt and confusion. “Two year olds don’t just die.” Except when they do.
On August 24th, the phone rang. I saw the coroner’s name on the call ID and froze, not sure what he might tell me. We knew the likeliest possibility, given the lack of any kind of finding during the initial investigation, was that we would be getting confirmation that the cause of death was unexplained. The information we were given instead threw us for a loop. They had discovered why Jude had died.
The anger came, in those first few minutes of trying to process what I’d just heard. That Jude died from influenza B. That he died from a vaccine preventable disease.
Preventable.
One that he’d been vaccinated against, but had apparently failed to develop immunity to. And our questions began. We had thought we were fairly knowledgeable about the flu, and were in the habit of taking precautions because we frequently have high risk people around us and we knew it was important to do our part. But we didn’t know it could be this. And we didn’t know how big the flu problem is in Canada, and how many people lose their lives every year.
We knew that with all the questions we had, anyone we talked to would have similar questions, and we just didn’t know how to answer them. We were worried about how to share this information, but knew that we couldn’t stay silent on it. Too many people were walking around not knowing why our toddler had died suddenly in his sleep, wondering if they needed to be worried about the same thing happening to them, asking questions, talking. We knew we had to open up about it.
But our child had died from something that, somehow, in the face of science and evidence and overwhelming proof, something that is a controversial topic. And we knew that talking about it would probably have consequences, and that we needed to make sure we understood it properly before we opened our mouths. We had to make sure that any conversation we had about the flu and flu prevention was based in fact, so we began learning, reading peer-reviewed scientific studies, reaching out to doctors and infectious disease experts to help us understand the real situation with influenza and our abilities to fight it and protect our communities. We were shocked to learn how very serious influenza is, how many people are killed each year, how quickly it can become lethal. We knew it could be serious for people who were in the highest risk categories, but we just didn’t know that it could be this. We had no idea that it kills almost twice as many Canadians every year as car accidents do. We knew that we couldn’t just share that Jude had died from the flu (despite his flu shot) and leave it at that, because there was too much more to the bigger picture, and a real conversation could save lives. What if people knew more last year? What if there’d been more flu prevention in our community? Jude might still be here. So we put it all together because the only thing we want is Jude back, and we can’t have him. It felt like the least we could do to make sure that we talked about his death properly, in a way that might help people make better public health choices and prevent other families from going through what we’re going through.
We read. We wrote. We designed and coded and organized and printed. And then we held our breath and published, knowing there would be backlash.
And there was, and continues to be. People who had previously been friends, who had been actively supportive, suddenly dropped out of our lives, some even questioning whether Jude had *really* died from the flu. Strangers reached out with terrible accusations. Our public conversations were branded as propaganda. But of course this isn’t propaganda. This is our son, who was here, who was alive and amazing, who died from a preventable disease, and this is exactly what happened to him. The months ticked by with interviews and news stories and radio shows and meetings. It has all been very public and painful, but we know that one more flu shot can make a difference between someone being here or not, and the amount of positive feedback we’ve had has shown us that people are hearing this and maybe they’ll be the ones who are better protected when it matters, and maybe they’ll be the ones who prevent someone whose body can’t handle the flu from contracting it.
Halloween came, with only two little trick-or-treaters.
I turned 34 and couldn’t have cared less. Who wants a birthday when your kid only got two of them?
We took two kids and a penguin to see Santa. We hibernated through Christmas, and hung five stockings, but only four were filled.
Thomas blew out his birthday candles without Jude beside him, waiting to eat the cupcake that Thomas has never been interested in. Thomas turned three and Jude didn’t.
Impossible.
And here we are. One year later. On May 7th I didn’t know how I could get out of bed one more day in the rest of my life. I knew we both had to, because we needed each other and we had two more amazing little kids who needed us to figure it out for them. But there was no will to keep going. I remember waking up one day and realizing that I wasn’t breathing. I could feel that it just wasn’t happening, and I didn’t care. I’ve heard that people can die from a broken heart, that their bodies will shut down when they’ve been through extreme trauma, and I understand that now in a way I didn’t before. I sucked in air because I had to, later telling one of my best friends that I didn’t have a choice because my house was a mess and I couldn’t leave Craig with that. (And thank God for the best friends anyone can have, who have listened and cried and laughed through the most morbid moments with me.)
I didn’t know how we’d get through this first year, or what kind of shape we’d be in when it finally came. I’m proud of the work we’ve done this year. Jude left before he had the chance to make his own impact, and we’ll never know what he would have chosen to accomplish. But that boy who we waited so long for. The boy whose name came from the fact that he took a sad song and made it better. We are so much better because he was here, because we loved him and he loved us. And there is nothing else to do but to continue that in his memory with whatever time we still have ahead of us.
We didn’t know how this anniversary would feel. In our experience the days leading up to an anniversary have typically been harder than the day itself. Today we got up and talked about how today is awful, but it’s the same kind of awful that every day since Jude left us has been, and the same kind of awful that every day ahead of us will be. And that’s intimidating, to know that we probably have years and decades more of days just like this one in front of us. We had hoped to do something special today with the kids, but got rained out of the only thing that felt kind of right. So we’re home, in our PJs, watching cartoons and eating comfort food, and just… breathing. Because it’s all we can do.
This past year hasn’t been all sad. We’ve found our laughter and our smiles. We’ve found comfort and breaks from the sadness in the arms of our closest friends and family, people who have rallied around us and made sure that we’ve been cared for through it all. We’ve visited favourite places and taken the kids on brand new adventures, and we’ve loved each other and held each other together. It’s a strange feeling, living life when you’re no longer whole. I feel like someone ripped my guts out and I’ve just been walking around without them, and I imagine I’ll carry that hollow space in my body with me the rest of my life.
What do we do now?
The same thing, I guess. One foot in front of the other. Lean on each other and hold each other up. Laugh with our friends and family, the ones who have made a point to love us through the worst days of our lives. And talk about Jude. Remember Jude, love Jude, and find ways to make the world better because Jude was here. Because he is gone now and we are his legacy, and he deserves to be remembered for the way he made the world better, and not just because he died from something that people like to fight about.
Jude was amazing. He is more than his cause of death. He is not an agenda or propaganda. He was a real person, one of the most important people in my life, and we don’t talk about what happened to him because we want to fight with people. We talk about what happened because we are desperate to protect someone else from being in our shoes. This isn’t the soapbox we’d have have chosen for ourselves, but it is the one that was handed to us when our lives fell apart. Maybe there will be fewer people like us in the future.
And when we’re not talking about the flu, we talk about Jude. And we laugh. And we cry. And we miss him and love him, forever. And we keep trying to wrap our heads around the fact that he is gone, and we’ll never get to hold him again. We’ll never walk him to the school bus, or coach his t-ball team, see him fall in love, watch him find what makes him tick and help him go after it. We focus on the short time we had because we can’t believe everything we’ll continue to miss.
Impossible.
Photo by the lovely and ever-talented Jessica Blaine Smith ♥
Make life better for someone today. For Jude, for everyone.