Forever Mighty

Sweet Savanna

What a thing it is, to have to write a thing like this.

There are tragedies happening all over the world, all the time. We know this, but we can’t focus there. We can’t make it our reality. We have our own realities, our own priorities. Our own need to not only survive this crazy life, but thrive in it as best we can. And we can’t do that when we are focused on the suffering of others.

But sometimes it hits close to home. And when things intertwine with the subjects and priorities of our own lives, they take on meaning – life and substance and consequence.

Last night, at 4:15 am, the world lost a soul. A sweet little girl named Savanna.

We didn’t know her. Not in the way you “know” a close friend or family member. Not in a way that gives us any authority on how her passing will affect the day to day lives of her family. Her loved ones.

But we loved her, nonetheless.

Savanna had the same disease as Violet – neuroblastoma – though she was diagnosed at a slightly different stage and progression. She was two when she was diagnosed, I believe. This is a much more typical age for this to present in a child. That alone is an incredibly awful statistic - a deadly cancer preserved primarily for babies.

Like all the warriors we’ve come to know that have spent time on the 8th floor of BC Children’s, Savanna fought a battle no child should have to fight. She experienced losses. A kidney, included, that prevented her from undergoing a second bone marrow transplant, which is normally part and parcel of the neuroblastoma treatment procotol.

We met them at some point during Violet’s early months of treatment during comings and goings in the hallways. Through treatment, Savanna had become close to Rylie, who we had also developed a relationship with by association. Rylie, too, was three years old and battling the same “N” word. Or “C” word. Or a handful of other ugly words I could use to identify it. Rylie’s dad, it turned out, grew up on the other side of the world with a friend of mine in Peachland. Six degrees of separation, even in the most horrifying of contexts.

Savanna’s mom was so very kind to us. She made Violet and Rylie beautiful plaques with their names on them, with unicorns and sparkles, to hang on their respective hospital room doors during transplants. She also made matching t-shirts for the girls – “Neuroblastoma Picked the Wrong Girl. Fight Like a Kid.”

And they did. They fought side by side, on opposite sides of the walls, battling it out breath by breath. Moment by moment. While the world – their mothers – watched with bated breath of their own, agonizing for positive outcomes.

She thought she had it. We all did. After recurrence and after recurrence, it was looking so hopeful. She thought she had it beat.

And then they spotted something, and the story turned. Turned hard. Turned fast. Too fast to find a space for.

I cannot write their story, or any part of it, because it is not ours. Not mine. I can’t even write Violet’s because she, too, has had a journey of her own. We must make things ours and make their meaning our own, because it is the only lens we have. The only choice we’ve got.

I’ve been struggling with this one. Deeply. Savanna isn’t the first one lost to this, and lost during the context of our own battle. She isn’t the only one that has left an empty room and hole in our hearts. But she held a special place for us, and in the end, represents an outcome that triggers deep-seated fear I have tried to avoid facing full on.

We just returned from our Wish Trip (a blog post, or series of posts, that should hold their own significant weight in this tale). It should be the main event for me, right now. It should be the thing I want to talk about, and think about, and share. And it is – it was one of the most epic experiences I will ever have in my life. It was the richest, broadest, most profound celebration I have ever had. But part of the reason it was so expansive and deep was because of the context we experienced it in. The timing of it all.

Matt had to remind me over and over again on the trip, “This is for Violet. For Lucy. For you and I. We need this. Be here. Remember what we are celebrating.”

But Savanna. Her mother. My heart.

To say I was a nervous wreck on the trip is an understatement. Matt and I collectively went through more than our fair share – the neighbourhood’s fair share – of Ativan to get through. Not because it was negative. The opposite. It was just so much. The crowds. The love. The attention. The generosity. The intensity.

And the guilt.

You can rationalize almost anything in life, but unless that logic seeps into your soul, it is just words. Empty self-talk. Of course, I “know” it isn’t my fault - that Violet was there, laughing, giddy with sugar and a sense of childish freedom and joy. And that Savanna wasn’t. Of course, we deserved a celebration.

But, of course, I couldn’t separate one world from the other. Of course, I felt the complexity and nuances and agonizing extremes of emotion that were involved in that experience.

The blessing and the curse of going through something like this is that life expands to heights and depths and breadths beyond the “relatable norm”. Beyond what many of us have to consider and process on a day-to-day basis. Beyond what you can expect others to understand. You lose your innocence, so to speak. You lose your ability to cruise through life without evaluating everything on a delicate level. It becomes exhausting at times, constantly focusing with intention, constantly having to pay attention to everything.

But there is also the quality of elegance and grace and effervescence that comes from it. You can’t take a normal approach to things because the “normal” perspective doesn’t allow you to cope. In order to take in aspects of life at the extremes, you need a broader view.

In order to deal with childhood cancer and death, you need to feel life at the edge.

Our family is a bit Disney-obsessed. It’s what my parents spent every last dime on in my youth – Disney World vacations. I lived an incredibly blessed childhood, full of love and joy, so going to Disney only amplified my expectation that life was full of magic. Everything was easy. Challenges were more about how long we had to wait in a line, and less about how long we had on this earth.

This time we stayed at Give Kids the World Village – a resort created for Wish Kids intended to give critically ill (dying) children a sense of magic while there is still time. To spoil them. To distract them from the tragedy and fear of their circumstance. The village was full of families in that boat, surrounded by everything imaginable. Free food. Endless ice cream. Pools and splash parks and outdoor movies. Character tuck-ins. Rides and skee-ball and mini golf.

But there is an undercurrent of fear. Of time ticking away. Of loss and uncertainty. And it heightens the senses. It makes it impossible to miss anything.

Today, I feel it, too. That heightened awareness. Violet is downstairs nursing a cold. Each time she coughs, my heart leaps into my throat. Maybe it’s a tickle. Maybe it’s pneumonia. She complained last night about a stomach-ache. Today, that seems to warrant a trip to emergency, just to be safe. What if we miss something again?

Savanna is on a billboard in Lake Country for the new BCCH campaign. “Small is Mighty.” She stands like a warrior princess. She is a beacon of strength. Resiliency incarnate. She will forever be a reminder that although we all have an ending we can’t escape, we can make the most of what we are given, no matter how small.

Sweet Savanna will remain in my heart, not just as a symbol of what we have endured, but in her own right – small, beautiful, full of fire, mighty.

I cannot make it right. I cannot take on her suffering, or her mother’s grief, or the hundreds of thousands of children we saw represented in stars at the Village that have battled and passed. I cannot hold that all in my heart, not all at once.

But I cannot let the guilt of that fact take over. I can love them – love them all – and let that be. And know that there is still magic in the world. And joy. And suffering. And all of it, full spectrum. I can’t help but pay attention. But sometimes, we all should. Just to feel it.