I wasn't sure about how the two months mark would be. I have had to learn that I have no idea how any day will go right now. Some days, I do surprisingly well and can even laugh with you about the good times and all the good memories. Sometimes the loss is just unbearable. The fact that I will miss you forever, and will need to find a way to figure out life without you is heart breaking.
Today was going to be about you. I started the day with a breakfast meeting with the new Chair of the Quality & Safety Committee of the Board. He was learning about why it's so important to involve parents in all parts of the hospital work. I got to talk about you, and all the things we learned by caring for you in the hospital for those beautiful ten years.
Right after breakfast, I was talking at the Research Symposium at Children's. You and I were asked to join the Symposium this spring, and we had accepted to tell our story of you furthering research by the five studies you were involved in throughout your life. It felt strange to go without you, but I wanted to honor your life and all the contributions you did to research. You should have seen the teary eyes of the audience as I had to tell them you couldn't be there physically today. I am so fond of your liver doctor, and he gave me a big bear hug as I was walking in. I wanted to be on the panel partly because of the study you did with him. I told them about what your diagnosis meant to us, that I would not put you through another liver biopsy due to the pain you experienced afterwards, and what the mitochondrial drug epi-743 did for you and your ability to find your own voice with the help of a communication device. We got SO many questions, and the panel ran way over time, but I think it meant we did ok. I hope you listened in.
As the panel wrapped up, the organizer announced that the Research Committee had decided to donate a large amount to Miracles for Mito in honor of all the research you contributed to Children's Hospital. Wow, Jacob. The mark you have put on that hospital just keeps amazing me. It gives me the true power to continue telling your story. By simply being you, Jacob, you impacted so many people. I was so surprised and honored to receive this donation on behalf of you.
After our panel, I got to talk to your PICU doctor from the weekend you passed. She wanted to know how we're all doing without you. She said because of you being YOU, this will not be an easy road ahead of us. I couldn't agree more. I got to chat with one of the neurologists taking care of you throughout the years, and he said your passing impacted the whole neurology department. You sure kept them on your toes your whole life, but they also saw the special boy you will always be in our hearts. Jacob, I found so much comfort from being at the hospital talking about you, and feeling that even if you can't physically be there, you're still making an impact. I am only your voice, and I am not even half as cute as you are.
As I came home I had a laundry list of things to do, since I am going back to work on Monday. I decided to take a moment, and watch this 2 minutes video from your balloon release at the top of Flagstaff. It is a beautiful memory. I hope you loved the balloons we sent you that morning:
I also wanted to tell you that today was ok, Jacob. I hope your sister is having a good day too. This week has been incredibly hard on her. Please watch a little extra closely over her as she's encountering so many "firsts" starting high school.
I also wanted to show you the beautiful necklace Sarah and Joakim gave me for my birthday. I am now having a little piece of you close to my heart every day. What a special gift.
Until next time, Jacob.
I love you to the moon and back,