The Tedford family's application appeared in my inbox one day and my eyes instantly welled with tears. Their son, Connor, was diagnosed with a terminal genetic disease called MLD (metachromatic leukodystrophy) that will take away his functions, including the ability to move and communicate, as his brain matter breaks down. His parents requested that we "capture moments together before he gets any worse, while he is still able to share his beautiful smile."
I had a great phone call with Lauren, Connor's mom, and we scheduled our session for November. When I pulled up to their New Hampshire home, the bright yellows and oranges in the trees surrounding their house were brilliant even with the sun hiding behind a thick layer of clouds. We decided to play outside for as long as the rain held off so Connor and his little brother could play together. Connor, at 2.5 years old, has lost his ability to walk but is determined to get places by crawling as far as his little arms will cary him. Every now and then, he'd be focused on getting from one place to another and I would catch his eye, which is when he would flash me a great big grin before getting back to the task in front of him. His smile is indeed beautiful and worth sharing. I hope you will find as much joy in is as I did!
At one point, we brought out the bubbles to play with because who doesn't love blowing bubbles?! The boys were full of smiles and laughter as the bubbles gently grazed their faces and floated off into the fallen leaves at their feet. When the boys could no longer agree on who got to hold the wand and blow the bubbles, their uncle jumped in to make them smile. He chased them around and had them squealing with excitement and delight at the thought of being caught and tickled. As the air became more damp and mist settled in, we decided to go inside to warm up and grab a snack. After the boys had their beloved string cheese, they were pulled around the house in the box "train" with huge smiles plastered on their faces. Their smiles were so contagious, my cheeks hurt by the end of the evening together.
As we said our goodbyes, we captured some sweet moments together of the boys loving on their parents. Lauren sent me off with the most wonderful homemade apple sauce and a hug - both of which I will never turn away.
My own daughter, Skylar, never lost her ability to hear, see, or think, but I do know the pain of watching the rest of her body deteriorate. Every day it's a fight, and every day, you hold onto the gifts you still have - a smile, a snuggle, a breath. There are days that leave you weary - the realization that your child has lost their ability to express happiness through a smile, the loss of speech, the loss of movement, a close call with death - and the knowledge that there is absolutely nothing you can do to make it better. In fact, it's just going to get worse. But you hold on to the present, because you recognize the gift that it is… You soak in their smile, their sweet little hands with skin as soft as silk, the peace on their face as they sleep, and make a point to store those memories. You take one moment at a time - sometimes by the second - and you keep breathing.
It was a beautiful thing to watch the Tedford family make new memories and store them away, and I was so thankful to be able to preserve some. Thank you for helping us get to NH and photograph this family. Connor's smile is powerful. I'm honored to share it with you and hope you will keep the Tedford family in your heart in the new year. May 2017 bring you peace, love and joy.
Happy New Year!!!