Memory Lane

Often times I find myself traveling down memory lane, going back to moments of Connor that seem both like yesterday and long ago. I have so many memories but it’s the videos and pictures that really get me; all the details we tend to forget as the years pass by. It’s as if I am opening the most special gift each time and it never gets old. I am grateful that I took the time to capture/record everything that I did. At times, I’m sure people thought I was somewhat obsessed with taking pictures and videos. In retrospect, it was so much more. It was like God was nudging and encouraging me because at the time, it was only he who knew what would unfold years later. He knew I would need those little gifts to stay afloat in the biggest storm of my life. Sometimes they bring smiles and laughter and other times tears, but it has become an important form of therapy for me. When I see Connor in videos and he is talking, walking, running, exploring, or eating (which was always his favorite thing to do :)), I want to reach out and hug that little boy. On the hard days, it reminds me that that little boy (my sweet Connor) is still here, just hidden behind a ruthless disease that is determined to take him from us. We will never stop fighting. Together, we look Batten Disease in the face every day and say “not today” and we continue to make memories and love each other because that’s all that really matters…LOVE

We would like to share some of our favorite memories with all of you so several of our upcoming blog posts will contain a short video or a picture. Here’s the first one. May 26, 2013 – Connor was just 23 days old. He has always loved spending time outside, listening to the birds and feeling the breeze on his face! The cute rhino outfit he’s wearing was one of my favs 🙂

A Letter to My Jake

Dear Jake,

I’m so proud of the young man you have become and I want you to know how much you are loved every single day. You have sacrificed much in order for Connor to have the level of care he needs. It’s not fair. No brother, no teenager should ever have to go through what we are going through. Dad and I are doing our best to try to give you as normal of a life as we can. Thankfully, you have a great group of friends who are always there for you too. And they are all kind to Connor, always making sure to say “hi” or talk to him for a while when they come over. Friends like that are a special gift. There are so many things I love about you. You are a goofball. You love music and all things outdoors. You are good at everything you try. You overcome every obstacle life puts in your path. You don’t care what other people think about you. You are smart, handsome, and have a kind heart. You know when I need a Jake hug. You make the best mac and cheese. 🙂 You are a wonderful son, brother, and friend. No matter how busy or stressful or crazy life gets, I am always here for you. I LOVE YOU!