Because It's All I Can Do Right Now

I wish that I had something profound or meaningful to share. The thing that always connected me to so many people over the years was my ability to speak for those who share a similar journey. I was the seasoned parent, the one with the most experience and someone who didn't hesitate to tell it like it is.  

Not so anymore. I'm new to this death of a child thing. I'm the rookie and I have no words of wisdom or insight on how to deal with this loss. The ache from the loss of Jack is relentless and deep. I don't know how you learn to go on and live life again.

What I do know is that Jack made a difference in so many lives. What I can do is share more of what was shared with me from many of the physicians who cared for Jack over the years upon learning of his death. 

Because that's all I can do right now.

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Dear Ann,

I am so sorry to hear your news but relieved to know Jack is at peace and no longer suffering. Thank you for thinking of me at this time in your and your family's life. Jack made me a better physician and person and with you as a partner, helped move classes of future physicians down a more caring path. Please let me know when you decide how best to continue to honor Jack and everything he stood for. I would be honored to be a part of that project with you. Thinking of you, your other children and your husband and hoping your memories of Jack help to heal your wounds and ease your pain.

Jack isn't gone: he is a part of everyone he ever touched. He will be with you at every family event. You will feel him in the room. He will watch over you now. Keep in touch friend. 

(Former SLCH PICU Intensivist - not the same person who spoke at Jack's funeral)

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Dear Ann,

I was so sorry to learn of Jack's recent death. Please know that we are thinking about you during this difficult time. I will very much miss our yearly visits, and particularly Jack's special smile.

"Perhaps they are not stars, but rather openings in heaven where the love of our lost ones flows through and shines down upon us to let us know they are happy." (Eskimo Proverb)

(SLCH ophthalmologist)

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Dear Ann,

I have always been so touched over the years each time that I heard from you updating me about Jack.  Needless to say, this was no exception.  He had been through more in his short life than most people endure in a normal lifespan and he was always surrounded by a loving, adoring family, which is the best gift for which any human being may be blessed.  I am glad to hear that he passed away in peace and although I know how much he will be missed, he is finally out of pain.  I hope that all of the strength that you showed during the course of his life will serve to carry you through this difficult transition.  Without this sounding wrong, I take solace in the possibility that you will hopefully be able to expend some of the time and energy spent caring for Jack now taking care of yourself.  In that regard, if and when you have the time, drop me a line to let me know that you're ok.  You're an amazing individual and while Jack was born with a brutal and unrelenting disease process, he was an extremely lucky little boy to have a family that loved him so.

With deep respect and admiration, I wish you strength.

(former SLCH cardio-thoracic surgeon)

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Ann,

I may make a lot of typos as I write through my tears. Thank you for sharing your last day.  I know your life has changed in many ways over the years, the move to St. Louis for your daughter, the adjustments to make room for a ventilator in Jack's life and the life of your family, the move back to Phoenix and the struggle to find the right doctors for Jack. Through it all you loved him with every fiber of your soul and gave him everything you could. You just gave him the biggest gift a mother can give, his freedom from a life of pain and restriction. I admire you and I know you know he will never be forgotten. The last e-mail you sent sounded very final. You don't need to have a question about Jack to contact me.  I consider you a friend and will be here if you need me.

(former SLCH pulmonologist)

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Dear Ann,

I am so sorry for your loss. I know that heaven is a better place with him there. Reading your blog touched me not only as a physician taking care of children but also as an expecting father (our first child is due in 6 weeks). We are in such a rush when seeing patients sometimes that we don't see beyond the machines, blood tests, or x-ray. Jack is a wonderful example of someone who despite physical limitations was able to touch those around him. Reading just a little about his life and reflections from those who knew him reminds me of the living soul that exists in all of us. It’s truly a gift from God and I know that he will live in you and your family forever. Wishing you and your family the very best in this trying time.

(Urologist)

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Dear Ann,

My heart is breaking as I read your note. Please accept my deepest condolences and know that Jack's spirit lives on with all the nurses and caregivers who were privileged enough to care for him, as well as those who read the online stories about him that you were so generous to share. He made a difference. Thank you for allowing us the opportunity to have him in our lives.

Every month, our leadership team gets together to discuss ongoing projects and opportunities at the hospital. We begin with a mission moment. I am going to share Jack's story with that team, and encourage them to share it across the hospital, because nothing better illustrates why we do what we do, than Jack.

Thank you so much for reaching out. Please know that you and your family are in our thoughts today and in our hearts forever.

(SLCH – media relations person)

Jack's Celebration of Life (Edited)

I'm sharing the video montage that the videographer put together without asking for any input from us. I will preface this video with the following: there were beautiful songs sung by Mark's sister and brother - neither of which show up on this video. There were also beautiful talks by several people which also don't show up on the video. The talks that were "featured" weren't in their entirety. I'm not sure why the majority of the video focused on the burial, but the voice over during the burial video is the talk given by our friend Amy. The talk wasn't given at the graveside, it was given during the service. We have no video of the entire funeral service (which most of you don't want to see anyway, but which we paid for). In any event, here is the short version of Jack's Celebration of Life. 

Program

Prayer Card

Hang In There With Me

I know it's been awhile since I've updated the blog. I'm hanging in there, getting through each day as best as I can. I'm working on a blog post that I started writing last November, but it's taking me a long time to finish because I don't have the focus to sit for too long and write these days. Hang in there with me. I promise I still intend to write and share on the blog.

We are supposed to get the video of Jack's funeral service tomorrow. I will upload it to the blog for those who might be interested. The service was close to 2 hours long - not sure anyone wants to watch a 2 hour video. But, I'll make it available just in case someone does.

Much love.