I have this photo on my phone of Eva. I spread the apps out across my phone so that there’s a screen with just one app and I can swipe through the screens until I reach her face, free from apps in the way.
It’s the face I see before I go to bed, and the face I see when my alarm goes off in the morning.
It’s a relatively new photo to me, taken by Eva’s home day carer in the month before she died.
I look at it and it sucks the air from my lungs, because I see so much there.
For many, what they would see first is Eva’s eye. It’s unusual to be sure. Then they’ll see her NG tube, a classic symbol to any who recognise it for what it is, that something is up.
They’ll see these things, and I don’t blame them, but it’s not what I see.
What I see is a girl engaged in her world. I see a girl pushing herself physically to get stronger so she can explore the space around her. I see a girl with hope and determination. I see a girl on the brink of her life, ready to experience everything.
I see a girl who knows she is loved, and who uses that safety and security and warmth to thrive. In her upward glance, I see a girl who is striving, who is focused, who is confident to try. I see a girl who defies limitations and who reaches out into the world, despite not knowing what she will find, and despite the numerous times that she has experienced touch as a bad thing with needles and pain.
I see a girl with personality and spark and cheek who dares everyone she meets to try not to fall in love with her.
All these things fill my lungs and chest, until I realise I also see a girl who had no idea she would die in a few short weeks, and the air leaves my lungs. I see a girl who was doing so well, and making so many leaps, who had so much potential and who could not know that this potential would not be reached.
Looking at her face, it feels so unfair, and it is, that someone so young and full of life and battling things that many don’t even dream of, should have her life cut so short. She was on the brink of something and you can see it in her face. She knew who she was and where she was going.
With Eva’s birthday coming up, it’s impossible not to think about who she might be and what she might be doing if she was still here. My life, her life, changed in the blink of an eye and all that potential and focus, and determination, suddenly gone. It’s easy to go to the dark places and think, what was the point of any of it? What was the point in her struggles? In her effort? In her determination to lift her head and roll and be part of the world. What was the point in the pain of so many needles and procedures and tubes down her nose?
I won’t condescend to say that the point was that it changed me. It did, but that wasn’t the point to Eva’s life. That was a welcome side effect. A necessary side effect. Eva was not here for other’s growth. She was not a challenge for me to overcome and mature from. She was a person and the point was that she was here, she was loved, she experienced life, she loved life. The point is, there is no point, no greater meaning, but she made the most of it anyway. She loved and laughed and experienced everything she could in her short stay. She did life right.
While she has inspired me to do so many things I wouldn’t have done without her, writing like I do, podcasting, sharing stories, advocacy, that wasn’t why she was here. It wasn’t her job to inspire me, or to inspire anyone. It was my job to step up. She made me see things differently, but again, that wasn’t her responsibility, and it doesn’t explain the point of why she was here at all.
The point was just her. She was enough. There didn’t need to be any meaning, or outcome, or consequence. She was enough, just as she was.
She was mine and I was hers. And in that little face I see how lucky I was to have her.