Sunday, March 19, 2017


Dear Jacob,

I found myself at Children's Hospital this morning, exactly nine months after you passed away at this hospital. I was talking at the Pediatric Excellence Collaborative Summit about collaboration, family engagement and patient advocacy this morning. All things we did so well together. Things I dearly miss today. As I was walking from the hospital garage towards the hospital building, it took me back to your last day at the hospital. Your dad and I walking over to Panera Bread to buy some breakfast after absolutely no sleep overnight. I remember sitting down with your dad outside, and I was crying so hard knowing your end was so very close. I remember thanking your dad for sticking with us through the good and the bad because I knew I could never have done it without him. He said the same thing to me. It was sort of a promise to each other for the future as well. We would stick together no matter what.

The opening of the Conference went well this morning. I realized I didn't really need the notes I brought. I could simply talk from my heart. I was able to get through the speech without crying. After the speech, I sneaked out. I was having birthday breakfast with a dear friend. But before I left for breakfast, I sat down in the atrium. I sat next to the famous ball machine, and just thought about you. A dad was stopping at the ball machine with his little baby boy in a stroller. I was thinking that you were probably the same age when you were introduced to the ball machine the first time. The sound of the balls is distinct. It's a sound I would recognize from any other sound. It brings back so many memories from ten years of life together. As I was sitting still, listening to the balls, I saw a big Minion balloon in the gift shop right across from me. The balloon was waving back and forth, and it was as if you wanted to say "hi mama". So, the tears came. I can't believe I have lived nine whole months without you. It feels surreal. Sometimes I feel as if I watching my life from the sideline. I am wondering how I will ever truly fit in this world again after the tremendous loss of you.

I love being back at Children's. I always feel a strong connection to you at the hospital, but the thought of entering the PICU is still overwhelming. I can't. I might never go in there again or maybe I need that special sign telling me that this is the right time. It's a little to close to home. I have a dear friend with her daughter in the PICU right now. They have had a hell of a week. I wish I could find the strength to enter the doors of the intensive care unit to give her a hug, but I know my limits. She might have to hug me instead of me hugging her. And then there is my other friend. This passionate dad whose son is fighting for his life. Fighting against a tired heart and tired lungs. We're all watching and hoping for a positive update. Hoping for that sign that once again he won the battle over mitochondrial disease.

I am so very sad and mad about your disease right now. I know you will take good care of your friend Robert. I know you boys will make up for the times you spent being sick together. My heart breaks for Robert's parents who tomorrow will wake up to the most dreadful day. There are no good words. There is just so much sadness and heart break.

I am trying so hard to live without you, but lately our community has suffered a lot. Sadly, I know what it means to lose a child. I know it to my core. It's terrible. It makes you question the core values of life. I am once again searching for that larger purpose of life you gave me. That purpose that is just a little bigger than life itself. Because we have touched and lived it together. And now to find it again.

I miss you so incredibly much, my sweet Jacob. Please, keep an eye on all of us tomorrow. I will take a sign or two.

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



  1. I love that you share from your heart. I know what it is to have a sick child and hospital stays and visits. I have heard the sound of the ball machine. I do not know the actual loss of a child . Please know that you and your family have deeply touched my heart and are always in my prayers as you travel this journey of loss and the healing that comes from it.