Friday, September 9, 2016


Dear Jacob,

Fall is in the air. Fall was your season. I found myself finishing up my workweek on the front porch, and I could picture you on the therapy mat under our cherry tree. Often I simply had you in a t-shirt and diaper, so you could feel the sun against your bare legs. We often moved therapies out on the front lawn. It was your time of the year to enjoy the garden, to go for walks, and to breathe the fresh air. I enjoyed those moments with you so very much. What I would have done for another fall together.

The other week, I found myself outside on the front porch with your night buddy and nurse Libby. The grapefruit beer tasted extra good, and my heart soaked up all the love for you. It's something so comforting to spend time with your inner circle of friends. Your friends who I can simply sit with and cry with. There are no needs for words. We cherish your memory as we feel the void from you not physically being with us. Despite tears and heartache, they are the ones who carry me forward.

Libby still has a hard time understanding you're truly physically not with us any longer. She remembers the endless times you were fighting for your life, and how you always fought through. Sepsis, pneumonia, status epilepticus, bacterial translocation of your gut, so many emergencies and you always came through.

In this new life of mine, I miss the resilience we shared. How we were knocked down by emergencies and worries for your life, and how you always decided to come back stronger than ever. You had an ability to rise rather than letting failure overcome you and drain your resolve. How I miss that strength you gave me. I remember those long nights in the hospital when the nurse woke me up every hour, and how I still got up the minute I heard your breathing change, which meant you were awake. How I got you all ready for the day, doing your vest treatment, double-checking every medication, changing your diapers, repositioning you, and putting on Curious George on your IPad at the same time as I was sipping the weak Hazelnut hospital coffee. And when you were ready for your morning nap, I ran. I ran around the hospital exactly eight times which translated into six miles. I found energy to run no matter how sleep deprived I was. I found the energy to fight for you no matter how tired and worried I was. I found energy to juggle hospital life with family life and work every single day. I found resilience every day to fight for you, to fight for us, to fight for our family.

I miss that extreme strong power taking over my body and mind. I miss your strength. I miss your fighting spirit. I miss you, my sweet Jacob.

As we're taking baby steps to figure out our new normal and figuring out how to be a family of three, I am seeking resilience. I get knocked down by people looking the other way rather than acknowledging what happened to you. I get knocked down by seeing your sister and dad having hard times. I get knocked down by finding a new purpose in life. I get knocked down by the simplicity of this life. I get knocked down by the hours and moments I could have spent with you. But because of you being you, I still find the ability to rise each morning, I get on the phone before the sun rise to talk to my employees in Europe. I might be tired, I might need coffee, but someone needs me on the other line. After early work meetings, your sister needs me to wish her a good day and prepare the simple act of her lunch box. I fill my days. I fill my void. I surround myself with true friends. I surround myself with kindness and love. I seek for a new life honoring everything you taught me, and I search for resilience. I miss me some resilience. I miss you.

I love you to the moon and back,


  1. You have explained it so well. You still have it, that resilience was what got you up the mountains for the Courage Classic. It's what got you to New York to talk about Jacob. It's what gets you to meetings at Children's. And what gets you through every day. He taught you so much, and will continue to teach you things. Love to you all.

    1. Thank you, Deana. I guess I still find resilience. It just feels very different than before.

  2. Reminds me of a verse in the Bible, "Keep on loving one another as brothers and sisters. Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it. Continue to remember those in prison as if you were together with them in prison, and those who are mistreated as if you yourselves were suffering." (Hebrews 13:1-3)