Happy Birthday Jack

Today we celebrate 10 years of Jack. That’s a lot of years in “Jack” years! Every year since Jack’s 5^th birthday I’ve written a birthday letter sharing my thoughts about Jack, about myself, and about this journey we are on. Each year’s letter has its own unique tone, largely a reflection of the events of the past year. As I reflect on this somewhat of a milestone 10^th birthday for Jack and think about where we started and where we are today, it’s tough to acknowledge that not much has changed in ten years for Jack. Yet, if I allow myself to stand back and look at the whole picture and not simply focus on Jack’s progress, I recognize that despite all the difficult times and lack of progress over the last ten years, I really am very fortunate. Jack has spent minimal time in the hospital since his discharge from the PICU in 1999; we continue to have good health insurance; we have nurses who are dependable and who truly care about Jack; Jack is happy; I have three other seemingly well adjusted and happy children; I am still employed and I am still married. Yes, I have much to be grateful for. Ten years into this journey and I can finally declare . . . it.is.okay. Not easy, not a life I would have chosen, but definitely okay.

Some of you are probably wondering, who is this person? Ironically, I’ve been told by more than one person this last year that I have “mellowed”. To quote one person, I have “mellowed beyond description”. Initially, I wasn’t sure if this was a good thing. Does my lack of intensity mean that I have given up on Jack? Should I be pushing him harder or doing more? Yet, I can say with confidence that “no” I have not given up on Jack, and “no” there isn’t more that I need to be doing. I finally get that all Jack ever needed from me was to be loved. I recognize that my relentless pursuit of progress was never really about Jack, it was about me. It was about what I wanted, not what Jack needed. I’m done pushing Jack to be anything other than who he is. It’s no longer about where I can lead Jack; it’s about where Jack is leading me. And, oh the places we are going!

Jack and I approach the next decade with the resolve to use what we’ve learned these last ten years to reach out to more parents of medically fragile children through The Willow Tree Foundation, and to reach out to our future physicians through a new project - Touchstones of Compassionate Care. What a privilege it is to make a small difference in this world together with one special little boy by my side. A little boy who leads me well without ever uttering a word.

Finally, to all of you who have been in the trenches with us over the last ten years - keeping Jack healthy and keeping me sane …. THANK YOU! We couldn’t have made it this far without each and every one of you.

In closing, I share with you a short montage - “10 Years of Jack and Mom”. Enjoy!

Oh, just one more thing …. in case there is any doubt, I can still be intense when I need to be. :-)

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