Friday, August 26, 2016


Dear Jacob,

It's Friday night. Your dad and I are sitting outside on the front porch with a glass of wine. It's a little chill in the air, an early reminder of a season change. I can hear the neighborhood children in the background. Sitting outside in my chair on the front porch is such a familiar place, but I do miss the physical Friday fatigue from caring for you, sweet Jacob. I miss not having the baby monitor next to me, so I could keep an eye on you as you were entering dream land. I miss YOU.

I did something this week that I haven't done for seven years. I went back to work full-time. As I was getting closer to Monday, I started to feel a little anxious. I had gotten used to a slower pace allowing for grief and pain. At the same time, I knew I was as ready as I could be. I felt very welcome back at work. I felt a a sense of appreciation. I know I am lucky liking what I do for work, and I have some pretty great colleagues. Many loved and admired you, little Jacob. Many have followed you since you were born. I think you would be proud of my first week back at work.

As I entered the larger world rather than my protected circle of friends who are always on my side, I kept thinking to not lose sight of you. It's so important to keep the life lessons you gave me. You simplified my life in a beautiful way. I always knew what was truly important in life. I want to keep that in my life. Sarah and I have cuddled on the couch without phones and computers. Your dad and I ended up on our yoga mats together one evening, stretching for an hour. I even fell asleep in one of the poses from being so relaxed. We also went together to a beer and biking event. We had a great time, but it still makes me a little guilty when we do enjoy ourselves. I know you are happy for us, but I think it's the bittersweet truth that we would not be able to do this with you in our lives. It comes with a big emotional price tag.

My work at Children's keep me grounded. I got to tell your story at their Strategy retreat at Denver Zoo this week. There were over 100 people in the room, all creative minds thinking about how to make Children's a better place, but they needed to be brought back to the core of why they were all there. They needed to hear your story. I didn't tell them about your endless hospital stays (your dad and I think you had at least 100 hospital stays in your life, but who kept counting?). I told them about what made Children's our second home. I walked them through holidays spent at the hospital, craft parties with friends right in your hospital bed as you were having an EEG done, about us making Dr. E. late for her concert by her visiting with us as we had to make a difficult decision about your medi-port, the famous ICU Spa, and times when the medical team did everything in the power to get you home for Mother's Day or Christmas. I found the courage to show this last picture of you and your sister. I told them about the worst day of my life, the last day we shared together at Children's. I told them about the most empty feeling to walk out of Children's without you.

I first struggled with this picture. It brought back so many sad heartbreaking memories. Something switched this last week, and I just see beauty in this picture now. I know it will make some uncomfortable because of your breathing tube, but I just see the love between you and your Sarah. How I wish you two had had more time together. I know your love for each other will last forever, and it will make your sister do wonderful things that can't be taught, only lived. The price is just so very high.

Thanks for watching over your sister, Jacob. She had a much better week. She settled into a rhythm at school, and she's happy when we pick her up from volleyball practice. She is out with friends watching the high school football game tonight. She's growing up, your sister.

I wanted to show you what your old nanny Jac did for Sarah. Do you remember this favorite t-shirt of yours? She made it into a pillow, and Sarah sleeps with it every night. I love the little message you sneaked in on the back. We love when you leave signs for us.

We also worked on your room, Jacob. I want your room to be a place of sanctuary. A place of peaceful tranquility and introspection. I have really struggled to go through your things. I kept reminding myself that you were too wise to care for material things, but they are connections to you. Bonds of  love and memories. I wanted to have the room ready as I went back to work. I guess it's the organizer in me. I am pretty happy how it turned out. I have many more ideas of what I want to do, but there is a right time for everything. I can't force this work. It will come little by little.

I love when I get to visit with your friends. I visited with Mrs. Nerma this week. She misses you so much. She's in your old classroom every day, and I am sure you give her all kinds of signs. You two had a very special bond. Be gentle with her. Gosh, that school of yours is killing me. There is so much love for you just walking through those doors. What was I thinking dropping off your school picture and then heading in to work? It was not an easy transition between the two worlds I am living in.

Jacob, you are always on my mind. I love when you come and visit with me. I love the signs you leave for me throughout the day. I love all the butterflies you left for me on my run around the lake today.

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

Love, mom.


  1. The best and the hardest decisions are often made for us. There is no going back but there is holding on to the "good stuff".

  2. Heartbreaking photos, and beautiful photos. I'm glad you're able to see the signs he's sending you. Much love to you all.