Before we discovered Hayes’ brain tumor, Hayes had about a month of deteriorating strength. I could tell that our baby was in pain, even when he slept, I would watch him. He would let out a little moan every once and a while and would put his teeny hand on his head. In hind sight, he was probably having horrible headaches, but I didn’t recognize it. I remember Steve and I were desperate to see him smile again.
I remember one day I played peek-a-boo with him and finally, there it was, that BIG beautiful smile. I snapped a picture of his smile through the obvious pain and I sent it to Steve at work. All seemed right in the world at that moment because Hayes smiled. His eyes and smile are world changing!
The very next day we discovered the brain tumor. There was a moment in that ER when I held my sweet baby in my arms. The doctor had just shown us the horrifying scan of the monster that was growing inside my babies beautiful head. It was in that moment that I felt deeply compelled, despite our devastation, to tell his story. I pulled out my camera, took a picture and began to tell his beautiful story as the tears endlessly fell. It was probably not a natural reaction, but I felt drawn to tell the world about what we were experiencing.
If there was any beauty to be found in this tragedy it was that we immediately began appreciating the small and simple things. Our lives are made up of moments. Some moments are beautiful, some you wish you could change and some moments change your entire world. You never know what moments life will give you. I began in that moment seeing the beauty in even our brutal moments. When Hayes smiled, I felt a glimmer of hope and I grabbed it and never let it go.
I kept that hope because through every minute of painful dripping chemo, Hayes would smile and I knew it would be ok. Every success of Hayes became my joy. He would take a bite of food and I cheered. He relearned how to sit up and the pride I felt was bursting! He said his first word and I cried with happiness. Hayes showed me that life was joyful. Every brutal, painful moment…he changed me!
Hayes’ name means LIFE. Could there be a more appropriate name for him? He taught us how to live. At 20 months, he showed me that genuine joy is found in family. Happiness is found in sand between our toes. It’s found in the sun shining on our cheeks and it’s found in laughter. Those are the things that really matter. At the end of our lives, those are the things we leave behind.
Hayes’ story is still a miracle. He still gives me hope. Hayes is still smiling and now he is cheering me on. Rather than being angry that he is gone, I honestly feel brimming with gratitude. I don’t know why I was lucky enough to have him in my life. When God welcomed Hayes home into His arms, I know he was proud of my boy!
“I didn’t just fall in love with you, I fell in love with how you saw the world. And it was through those eyes I saw what I was missing. I saw HOME.”
If there is any advice I can give you from this experience, it is to tell your story! Live your beautiful life and love your children. Find the moments that really matter and leave your mark on the world.