Saturday, October 27, 2018


Sweet Jacob,

I went back to the PICU where you passed. I typically don’t shy away from the hard parts of life. I usually don’t shy away from a difficult conversation. I stay true to my values in life, something I learned from my grandma and parents very early in life.

I did stay away from the PICU. I stayed away from the one place where I lost you. I stayed away from the place where my heart has been beating through my chest. My heart beating of fear and worry for your life right in the middle of the ICU. The true kind of heart beating that make you lose track of time and where you feel the adrenaline kicking in, and your brain stays hyper focused.

The true reason I stayed away from the PICU was not the memories of you being sick. The reason I stayed away is because I didn’t want to relive you dying. It was as simple and as hard as that. I visit the hospital most months of the year. I have been in hospital and conference rooms, but did not enter the doors of the PICU. I knew I would one day, I just needed a good enough reason to do it.

When I got the e-mail that I was assigned to the PICU for my Board rounds, I knew this was the right time to face my fears. I was going to enter the PICU as a Board member and a Parent Partner of the hospital, but truly I knew I was going in as your mom, Jacob.

As our host and head of the PICU opened the door to the ICU with his badge, the click of the heavy door brought back a flood of memories. A click of a heavy hospital door. It reminded me of the sound of a prison cell closing behind you. I had never associated the sound that way before. The smell and colors of the walls embraced me. It was like going back in time where every little detail is ingrained in my brain. The floor I ran on the last time I made it to your room. The nursing stations, the bath room, the shower, and the many machines supporting the life of children fighting for their lives this very second.

My legs took me to the conference room, my brain still formulated the right sentences, my hand still hold on to my bag. I felt a light taste of metal in my mouth.

We all had to introduce ourselves in the conference room. I got hugs, not one but many. Many hugs because this is the tribe that saved Jacob’s life not one time, but many times. This is the team that fought our good fight side by side with us for ten beautiful years. The head of the PICU didn’t just introduce himself with his title. He also introduced himself as your doctor and acknowledged knowing our whole family. It was an intense feeling to be surrounded by the team who fought so intensely for you for so very long. The team who loved you, but was sad to see you return and cherished every time you moved up to the regular hospital floor. The team who said their goodbyes to you on June 19th, 2016 together with us.

When you needed the hospital, we actually preferred to be in the PICU. We knew there was no better place caring for you. The access to your medical team and attention to your acuity level were incredible. We always felt safe when you were in the PICU. Always. During the presentation I actually found out that our own Children’s Hospital is one of the most safe PICUs in the country. It was incredible to see the data on the screen validate our experience for ten years with you.

The one image I keep coming back to is you and I sleeping together in your hospital bed. It was often followed by many intense hours in the Emergency Room and a long intake as we finally arrived in the PICU. When everything was settled after hours and hours of tests and telling your story, the calm arrived in the room. It was only you, the nurse and I. You were typically sleeping from pure exhaustion and being on strong medications. That is the time when tears of exhaustion often came after holding it together. I got on the cover of your bed, I found a place next to you, and found your little hand. I still remember the feeling of your little hand, the shape of your nails, and your rhythmic movement you couldn't control. I have had some of the best naps next to you in the PICU. I miss the intense connection of doing whatever it takes. You and I on the hospital bed is an image that makes me miss your terribly. I even miss the green blanket we were laying on.

After the presentation, it was time for a tour of the unit. I ran into several of your nurses. They were surprised and happy to see me. We hugged, we smiled, we remembered. I felt at home in the middle of beeping monitors, scrubs, and clinical cleanliness. I even peaked in to the very room you were in the last time. The bed was occupied by a little girl. I felt at home in the shared smiles and teary eyes and so very connected to you and your past. The very meaningful life I had to walk away from to start a new life without you and the hospital we called our second home. It hit me hard to think about what it means to start over, especially when the decision wasn’t mine.

I also got to see all the improvements they have done for our families. I loved to see the Family Board right outside the shower room, and to hear that the actual shower room will be remodeled. I love that families can access the patio without leaving the unit. I sat on one of the patio chairs so many times eating my lunch or dinner and feeling the sun on my face. I love how the PICU continues to partner with us parents, knowing that we parents know our children best. I witnessed it this morning over and over again.

A good day in the PICU!

When I left the hospital this Tuesday morning to drive in to work, I felt exhausted but accomplished. I did it. It was so much better than I thought. The sincerity and true love for you made me realize that a part of you will always be on the 3rd floor of the hospital. I will go and visit again when the time is right. I know you will give me a sign.

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

Love, your mom.

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