May 13

Three years ago today I couldn’t write a diary entry. You were still sick – so sick – and in the midst of a downhill slide that left us numb. I knew you would get better. It didn’t matter what the doctor’s said, I had a voice in my head that told me and I believed it. I don’t know if it was a guardian angel or my own intuition, but I knew where we were headed. It just seemed like a lifetime away. I was angry and hurt and sad and guilty, but I couldn’t allow myself access to any of those feelings because I know I would have fallen apart at the seams. I had already failed you in your short life and I would not do it again. Not to you or your brother. Although you were both so resilient I knew you would need me at some point. So I kept on plodding along second by second, minute by minute, beep by beep. I refused to ride the roller coaster. I just kept on. I couldn’t write it down because then I would have to read it back and that would break me.

Now three years later I have some perspective, and it is a double edged sword. Sometimes those feelings I locked away take me by surprise and I experience it all over again, in earnest this time. I remember the phantom kicks, the tearful goodbyes, the singing in the bright lights to a wheezy, frail little body, fighting for breath. I remember feeling so empty getting in the car to go home, wanting to scream at the top of my lungs, or belt out the words to my favourite song. To run for a hundred miles until I streamed with sweat and exhaustion. But I was so disciplined in the control I wielded over my emotions I could barely manage a stifled cry. Where was that girl who attacked challenges with gusto? Why was her voice so muted, so cautious?

I have wondered to myself many times why I am writing this down. It’s a raw nerve I am exposing to the world, and in my most lucid moments I question my resolve. But in truth I know the answer, and I know it is necessary to write this diary three years after I penned the notes.

I write this because it is the story of how and why you are here and it is a story worth telling. And because we mourned you before you were born and never got over the shock of losing you – but the thrill of watching you become whoever you are destined to be goes a long way to cancelling it out. Because years later others will forget how incredibly strong you had to be before you were even able to breathe, but I never will. I write it because I had to proactively fight my instincts to hold you, protect you, take you home with me, feed you and love you in the same way other parents could and it worked in your best interest. Because I never lost faith in you but couldn’t muster any in myself. I just had to keep the end game in sight and trust you. I know you think you are a ballerina but I know you are a superhero. Capable of in fathomable things. You will probably never understand the depths a parent can feel under the circumstances we were under, but I want you to know your story and I want others to know it to.

There is more to come, and I am steeled for the telling of it. A few final twists I will relate so that one day you will know, without any scrap of doubt, that you are and always have been the greatest fighting spirit I have known. Because someday that might matter to you and because it has mattered in such a profound way to me.

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