Saturday, June 3, 2017


Dear Jacob,

This time last year was rough for all of us. You were fighting the hardest you could, but you simply could not catch a break. The battle inside me when I started to see the signs of losing you, and still hoping it wouldn’t be so. I tried to keep up with normal life to not lose my sanity completely. At the same time realizing I couldn’t keep up. I was surprised Sarah was out of school. I had no idea how it happened. I remember my friend Heather calling and reminding me that we were supposed to present at the national mitochondrial conference in less than a week, and I had no idea how I had forgotten about it. Time was rushing, and time was standing still. A battle inside my soul that I don’t wish on any parent.

A year later, and we ended up on a vacation we could never have done with you. We’re on the beach. It’s far away from hospitals, end-of-life discussions, and fear for what will happen next. But don’t let the sunsets, drinks, and ocean ever fool you. You are always in my heart, Jacob. In fact, Jacob, you always seem to find me on the beach. The one place I so wanted to take you, but never succeeded. I had a moment with you the night before we left on vacation. I told you that I was going to make the most of life, and I was hoping you would find us in the Mexican sun. Certain nights your closet star lights catch your left eye in the big canvas of you. This happened that night, and it was as if you were telling me: “mommy, go!”.

So many times, I heard of family and friends vacationing, and I always smiled. I smiled because I knew I couldn’t do that right now, and in the middle of suctioning and diaper changes, I knew there would be a time of traveling again – just not right now. And I smiled because of that secret. I knew the time wasn’t right now, but it would be a time again, and it would not come easy. I think that is why I always leave with mixed feelings. We can do this now, and we know why. It leaves me with a little guilt still.

The one thing I have been trying for is to find happiness in the middle of grief. You taught me this for ten years. In the middle of medical crisis and caring for a very sick you, we always seemed to find our happiness. The happiness for life. It’s not always as easy to find now, but I will keep looking because of you. I owe it to you, my love. I will continue living for both of us.

Sweet Jacob, I love you to the moon and back,


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