Jack’s Journey – The Early Years Part II

As I sit here, the night before I leave to spend a week in St. Louis – the City where Jack’s journey began, I think of where we were fifteen years ago at this same time.  Jack was in the Pediatric Intensive Care Unit at St. Louis Children’s Hospital (SLCH) recovering from surgery three days prior to plicate his right diaphragm in an attempt to resolve the persistent collapse of his right lung that was thought to be the cause of his inability to successfully wean from the hospital ventilator.

Thinking of those early memories and realizing that I only started blogging in 2006, when Jack was 8 years old, I decided that I need to go back in time and document the first eight years of Jack’s life as best as I can remember, before I forget it all.  I titled this entry Part II because it details Jack’s admission to the Pediatric Intensive Care Unit at St. Louis Children’s Hospital in January of 1999. I’m starting with Jack’s time in the PICU at St. Louis Children’s because that’s where my memories are right now as I anticipate my upcoming visit to St. Louis.  I’ll write Part I at a later time.

JACK’S JOURNEY – THE EARLY YEARS, PART II

Jack was discharged from the Special Care Nursery at Missouri Baptist Medical Center on December 22, 1998, a little more than six weeks after he was born. Jack required a small amount of oxygen to keep his O2 saturations at an acceptable level. At the time, I thought lugging around an oxygen tank in the freezing cold and snow was the biggest inconvenience of my life. (Ha!)

Once home, Jack appeared to be doing well, although he struggled to coordinate eating with breathing, which made feeding time very stressful for all parties involved. One night, sometime during the second week in January – I don’t remember the exact day, Jack, who at that time was able to easily move his arms and legs, was kicking so much that he kept setting off his pulse-ox because it couldn’t pick up his numbers. I was on “Jack duty” that night, which meant I was sleeping on the couch in the family room next to Jack’s basinette. I was so tired because I wasn’t getting much sleep caring for a newborn who struggled to eat. After being awakened more times than I could count for false alarms triggered by Jack’s constant movement, I was so desperate for sleep that I took the pulse-ox off of Jack’s foot. (Clearly, this was before I appreciated the importance of a pulse-ox.) After falling back to sleep, I was startled awake by a sound that I didn’t recognize but, for reasons I attribute solely to the grace of God, motivated me to get up and check on Jack. When I looked into Jack’s crib he wasn’t moving and his color was ashen. I picked him up and he was as limp as a ragdoll.  Everything I had been taught about CPR before leaving the Special Care Nursery with Jack was lost in my state of absolute panic. I ran over to the stairs with Jack in my arms and screamed for Mark.  Mark came running down the stairs, grabbed Jack out of my arms and proceeded to give Jack rescue breaths, which did indeed rescue him. I think it’s fair to say that I came a long way from that day when dealing with Jack’s future episodes of respiratory distress. I also think it's fair to say that had I not woke up when I did, Jack's journey would have ended that day.

Jack’s apneic event bought him an ambulance ride to Missouri Baptist Medical Center. From there, Jack was transported via a mobile ICU to St. Louis Children’s Hospital, where he was admitted to the Pediatric Intensive Care Unit. This was my very first experience with an intensive care unit and to say I was shell-shocked is an understatement. The lights were bright, there were multitudes of medical people milling around in a very small space, and alarms were going off non-stop all around me. I was overwhelmed and completely lost. 

They put Jack on nasal CPAP because his end tidal CO2 was 120 (normal is 35-45). I was a mess because I did not like seeing Jack hooked up to any type of breathing assistance. Little did I know what awaited us. While in the PICU, they discovered that Jack was born with an aortic anomaly called a vascular ring. Jack’s aorta arched to the right (normal is to the left) forming a ring with his anomalous left subclavian artery. The vascular ring was compressing Jack’s trachea and esophagus - an explanation for Jack’s difficulty with eating and breathing. On January 18, 1999, Jack had surgery to divide the vascular ring. I was terrified to see Jack after surgery knowing that his chest had been cut open and his sternum sawed apart. I remember slowly walking to Jack's bed after surgery, almost with my eyes closed, peeking just enough to take it all in a little bit at a time. Standing at Jack's bedside, I felt like I was going to throw up. He had so many tubes coming out of his tiny 5-pound body. 

post-op vascular ring division

Following surgery, Jack had a hard time coming off the hospital ventilator. They extubated him shortly after surgery, but he had to be reintubated and it was ten days post-op before he was able to wean from the ventilator. Jack was discharged approximately two weeks after surgery. When we walked out of the hospital with Jack, I thought the problem had been found and resolved and that Jack was on the road to recovery and a normal life.

I was so wrong.

finally off the ventilator post-op

Within two days of coming home, we had to bring Jack back to the emergency department at St. Louis Children’s because he was in respiratory distress again.  An X-ray showed that Jack had a partially collapsed right lung. Jack was admitted to the PICU again and was placed back on nasal CPAP again. He eventually transferred to the floor, where he spent another two weeks while they weaned him off CPAP during the daytime hours. It was also discovered during this admission that Jack had an elevated right diaphragm, which was determined to be the result of damage to the phrenic nerve during the surgery to divide the vascular ring.  Damage to the phrenic nerve is a known risk of cardiac surgery. Just one of the many breaks Jack never got.

After three weeks in the hospital, Jack came home on nasal CPAP and supplemental oxygen. But our reprieve was short-lived. Two weeks after being discharged from SLCH the second time, Jack landed back in the PICU because he was in respiratory distress yet again.  On March 7, 1999, Jack was intubated and placed on the ventilator. Jack never again breathed without the assistance of a ventilator.

One week after being admitted, the first attempt was made to extubate Jack from the ventilator. Jack didn’t last more than a few hours.  After Jack failed extubation, the decision was made to perform surgery to plicate Jack’s right diaphragm in an attempt to resolve the right lung collapse that was believed to be the cause of Jack’s episodes of respiratory distress.  

Following surgery on March 30, 1999, another attempt was made to remove Jack from the ventilator.  Again, Jack failed extubation.  At this point, the PICU team asked for neurology to consult because they felt that Jack demonstrated low tone and muscle weakness.  They didn’t know if Jack’s weakness was due to his prematurity and all the surgeries he had been through or due to an underlying disease. 

resting post-op diaphragm plication

As a side note, this was the beginning of me making waves when it came to Jack and his care.  In Jack's early PICU days, I wasn't yet tuned in to hospital politics and knowing who does what and, more importantly, who doesn't do what. Being the naive person I was, when I heard neurology wanted a muscle biopsy, I decided right then and there that I wanted Jack’s cardiothoracic surgeon to do the procedure because he had already cut on Jack twice and I trusted him.  Plus, he adored Jack.  The PICU staff seemed a bit uncomfortable with my request, but they honored it and forwarded my request on to Jack’s CT surgeon. The surgeon was kind enough to do Jack's muscle biopsy (bedside in the PICU). I say "kind enough" because, typically, cardiothoracic surgeons don't do muscle biopsies. They have more important surgeries on their schedules - like heart and lung transplants. In retrospect, I vaguely remember the surgeon not really being that happy about doing the muscle biopsy. (You could see and hear a lot more of what was going on in the PICU back in those days because the PICU rooms were pods separated only by curtains, which were usually open.) But, when he came over to Jack's bed to talk with me, he said "yes" he would be happy to do the muscle biopsy. He really wasn't!

But, I digress.

The preliminary results of the muscle biopsy suggested an inflammatory myopathy. Jack was started on high dose steroids and, after several weeks on the steroids, another attempt was made to extubate Jack.  Again, Jack failed. 

on high dose steroids and miserable

last failed attempt at extubation before trach

I first heard the word “tracheostomy” following Jack’s first failed attempt at extubation. I didn’t know much about a trach – I had never seen one, but one thing I did know was that I wanted nothing to do with it. I was adamant that I wasn’t going to consent to a trach until the doctors could tell me exactly why Jack needed one. I needed a diagnosis. In desperation, every time they attempted to remove Jack from the ventilator, I’d leave the PICU and go to the hospital chapel where I’d spend hours saying the rosary and begging God, Mary (the mother of God) and anyone else “up there” who might be listening, to please let Jack breathe on his own without the ventilator.  My prayers went unanswered. 

After multiple failed attempts at extubation and with all options considered and tried, ten weeks after Jack was first intubated, I finally relented.  I signed the consent form for Jack to get a tracheostomy, despite having no diagnosis or prognosis. 

Missing My Irish Angel

When Irish eyes are smiling, 

Sure,'tis like the morn in Spring.

In the lilt of Irish laughter, 

You can hear the angels sing.

Emotions

We've rounded the corner on the two month mark since I last saw and held my sweet boy. It feels like it's been two years. I've been spending a lot of time looking through old blog posts, pictures and video clips and I hardly recognize the happy child that appears in those memories. At the time, I didn't appreciate how good a life Jack really had and how good he looked despite all he had going on.  Oh, how I miss that happy Jack. I struggle to remove the images and emotions of the last difficult months of Jack's life from the forefront of my mind. I can't yet replace the painful memories with the happy ones.  His memories are not a blessing.  Not yet, anyway.

The tears still fall every day. They fall in the mornings on my drive to work. They fall every night when I carry on a one way conversation with Jack before I close my eyes in anticipation of the sleep that eludes me. They fall when I listen to music. They fall as I am asked to choose a headstone for Jack's grave. Today, in particular, my tears are intermingled with anger. I'm angry that I have to live the rest of my life without Jack. I'm angry that I have to pick out my son's headstone. I'm just f-ing angry. I'm not sure which is more draining, sadness or anger. Regardless, I'm drained.

I'm also thankful. Thankful for the amazing and continued support I receive every single day from my friends and family. The text message, email, card, Facebook post, telephone call and offer to spend time with me do so much to lift my spirits and keep me from sinking into an abyss of isolation and despair.

If you were to ask me how I'm doing, I'll likely tell you, I'm doing "OK". And, I suppose I am. After all, I get up every day, take a shower, get dressed, go to work, care for my family and my home, hike, go for walks, participate in 5Ks, give interviews, run a Foundation, spend time with friends. I even smile and laugh on occasion. So, yes, I am doing OK.

And speaking of Jack's headstone, we are still trying to decide exactly what we want. If cost wasn't an issue, the decision would be much easier. Mark commented the other day that we should just dig him up and bring him back home with us. It's tempting, I'll admit. (But, don't worry, we won't do that.) The one thing we are sure of is that we will include the following words by Maya Angelou on his headstone:

And when great souls die,

after a period peace blooms,

slowly and always irregularly.

Our senses, restored, 

never to be the same, whisper to us.

They existed. They existed.

We can be. Be and be better.

For they existed.

We can, indeed, be and be better because Jack existed.

Onward. 

The New Days of Our Life

I've sat down to write a blog post more times than I can count, but I can't seem to gather my thoughts enough to come up with something coherent. I want to write for you and I need to write for myself. So I'm just going to write and not worry whether it's my best writing.

Life without Jack is monumentally different. I didn't just lose the companionship of my son, I lost my life. For fifteen years, everything I did revolved around Jack. I now have the freedom I haven't had in years, but I don't enjoy it. I still can't bear to spend time in Jack's room. It takes every ounce of strength I have to not close the door to his bedroom so I don't have to look into his empty room. I can't listen to any of the music I listened to with Jack when I would lay in bed with him at night, especially during the last months of his life. I can't stand to be home because being home always meant being with Jack. The last movie Jack watched is still sitting in his DVD player; his travel bin we used to take all his stuff to Ryan House sits in his bathroom unpacked since the day we brought it home. I still haven't washed his clothes. I have tons of diapers, supplies and formula to give away, but I can't force myself to go through and organize things. I miss ordering his monthly supplies. I miss the connection with the people who helped me care for Jack. At least seventy-five percent of the contacts in my phone are Jack-related. I can't force myself to delete the contacts even though I'll never have any reason to call these people again.

When Mark and I both have to be places at the same time, I catch myself thinking - who is going to be home with Jack? For the first time in fifteen years, I leave the house for work without waiting for a nurse to show up. There are many mornings that I go to the cemetery and drive by Jack's grave site on my way to work. I'm not sure why, it's not like he's going anywhere. I still worry about him. Last night I was in tears because it was raining and it made me sad to think about Jack being out there in the rain and the dark all by himself. It's all very irrational, I know.

I still struggle with and am haunted by every decision we made for Jack the last two years of his life. Should we have intervened more? Taken him back to St. Louis to be evaluated by his team of physicians before we transitioned him to hospice? When your child dies, you can't help but ask yourself if you should have done things differently. Of course, I'll never know and there won't be one person who will tell me I should have done anything differently. But, I will always wonder.

I've read enough about the loss of a child from other blogs, essays and books, and in talking with parents who have walked this journey before me, to know that my doubts, irrational thoughts and nonsensical actions are all normal and part of the grieving process. I will grieve for Jack the rest of my life. And while I must learn to live and find joy without Jack's presence, I'm hopeful that I will eventually feel guided by Jack's spirit, especially as I try to find new purpose and direction in my life.

Speaking of purpose and direction, on Friday, I will have the honor of being interviewed by Adam Larsen for a documentary film that he and the organization Caregifted are creating, titled Undersung. I was asked to be interviewed for the film before Jack died. When I told the founder of Caregifted, Heather McHugh that Jack died, I also sent her and Adam the link to my post "Jack's Last Day". They both said that they still wanted to interview me for the film. (Heather also posted "Jack's Last Day" on the Caregifted website.) I'm excited to be part of this project and I hope Jack's spirit will guide me and give me grace during my interview. You may recall that Caregifted is the organization that granted me, as a long term caregiver of a disabled child, a week of respite in Victoria, BC. Even though Jack died, Heather is still allowing me to have the week of respite - which I will take in June. Caregifted and Willow Tree Foundation have very similar missions, so I know that Heather and I will have a lot to talk about when I see her in June.

In the meantime, you know what we must do ....

Keep pushing ONWARD my friends.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

the pictures of Jack that we had made for his funeral are now hanging in his room

My irrational self bought a jar filled with solar powered lights 

to light Jack's grave at night

drove by tonight to see if the lights worked - they did!

we put the "Onward" stone in the jar

My final tangible reminder of Jack - his thumbprint 

(the heart is from my friend Christy  - it stands for "finding beauty in the brokenness") 

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.

********************

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)

********************

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)

********************

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)

 ********************

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)

********************

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)

 ********************

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.

How Am I Doing

So many good people have been checking up on me this last week asking how I'm doing.

I'm sick to my stomach, can't catch my breath, missing my boy. I can't bear to look into his room and not see him there. I can't bring myself to wash his clothes that sit in the dirty clothes hamper. I took the dog for a walk today and I cried the entire way thinking of all the walks Jack and I took along the same path.  

I didn't wake up January 5th knowing it would be my last day with Jack. If only I had known, I would have touched him more, smelled him more, talked to him more. I would have spent more time soaking in every essence of his being. I should have done more. No parent can ever feel like they've done enough when their child dies.

They tell me with time, it will become easier; that I need to just take it one minute, one hour, one day at a time. I suppose with time, I will be able to get through the day without feeling like I'm going to throw up. Eventually, I'll catch my breath. But, how do I go on without my Jack?

Yes, I know .... one minute, one hour, one day at a time.

The title of this blog is "Jack's Journey and Then Some". Jack's journey has ended. It's been Ann and Jack for so long, I don't even know how to live just "Ann's Journey". I've heard all the things people say I will do now that I have the time and rest that I haven't had the last fifteen years. I wish I could share their optimism. At the moment, all I hope to do is simply stand still and just BE.  

Please continue to check in on me and let me know you care. If I tell you I'm doing okay, I'm lying. I will never be okay again. Not without my Jack. 

Onward, dammit. Onward.

~~~~~~~~~~~~~~~~~~~~~~~~

Jack's empty room - it's heartbreaking

all his "props"

More Reflections

Below are the reflections shared by the other speakers at Jack's Celebration of Life.


BRIDGET (Jack's cousin)

Hello, for those of you who don't know me, I'm Jack's cousin Bridget, and up here with me are some of Jack's cousins on his mother's side of the family.

Growing up with a large extended family, your cousins are usually your first friends and like every friend, they are in your life for a reason and have something to teach you. Every family has a different vibe and those who know our family might describe us as intense and assertive. And we are intense, we are intense in our love for one another and assertive about what we think is right. We’ll be the first to tell you, we would agree with your opinion, but then we would both be wrong. Many of us have strong personalities and do not have a problem voicing our opinion. Like grandpa always says—lead, follow, or get the hell out of the way. Jack was unique in that his expressions spoke louder than words ever could.

A family is not measured as one unit, rather it is measured by the sum of its parts and each person within the family helps define and shape its dynamic. As our cousin, Jack has influenced our lives in immeasurable ways. By having Jack in our lives we have learned that one can get his point across in many ways and that laughter truly is the best medicine. We have all spent time with Jack and he has affected all of us in different ways. Some of us, like myself, spent the summers with him just after he was born, while others were there as he was growing up. But no matter how we spent our time with him, each one of us had our own unique relationship with Jack.

Everyone talks about Jack’s smile and no one who has ever heard Jack laugh or has witnessed his smile could forget the way his eyes lit up or how contagious his happiness was and we were all lucky enough to experience it many times over. Jack truly was our borrowed angel and though his time here with us was short, it was surely sweet, and Jack’s loving, happy spirit will be sorely missed, but he will live on, in all of our hearts. 

______________________________

ANGIE (one of Jack's home health nurses and my friend from the Trach Board)

I’m a former trach mom. I met Jack, Ann and Kristi at the first trach conference in St. Louis. A few years later we relocated to Phoenix and I started taking care of Jack one day a week.

I would like to talk about what Jack’s days were like when Mark and Ann left for work from the eyes of those of us who cared for him as nurses, teachers and therapists.

Jack was a healthy kid, despite having muscular dystrophy. The busiest part of his days were mornings when we did his respiratory cares that are common to anyone with a trach and vent. Once that was done, we played. And we had fun because Jack was a happy kid, who was easy to engage, who had a great sense of humor and loved interacting people.

I know that none of us focused on what Jack couldn’t do, we saw what he COULD do and constantly brainstormed to come up with ways to engage and challenge his mind and body.

There are many people who worked with Jack over the years. I’ve heard stories of the standouts both here and in St. Louis. I’d like to mention some that I knew in my six years with Jack.

Anthon was a therapist who set up a lot of fun switch games on Jack’s computer. And Anthon, being a guy, set up stuff Jack loved, things that would crash, adventures with Sir Lancelot and villains behind doors Jack had to choose.  Quote “Oh No! You’ve found the evil dragon!”

Nicole was Jack’s OT, he loved her from Day 1. Nicole would start her session talking away as she gently stretched Jack’s hands.  He was enthralled with her. Then she would set up activities for him to move things with his hands and fingers and make buttons buzz and she even had him blowing bubbles. Each week she did one of Jack’s favorite activities and then would challenge him with new things. Nicole told me about a mesh thing that you can put food in to have Jack safely taste things. I went and got one we had him tasting all kinds of things. He didn’t care much for vegetables, especially broccoli.

One time, I was sitting with Jack and I lifted his arm at his elbow to let him look at his hand, just thinking how he can’t inspect his own hand. He was moving and watching his hand and then I felt his arm move inward and outward. And I thought, hmmm, he can’t lift his arm but he can move it if I lift it! Helping him move his arm really made him focus, so we did that activity a lot but my arm would get tired holding his arm so I got a couple Therabands and looped them over the track lift on his ceiling and suspended his both his arms.

Being able to move his arms opened up all sorts of possibilities. Mark kept great music on Jack’s iPod so now Jack could swing his arms to music. I had him move his hands through a water fountain. He figured out to tilt his hand to spray the water in different directions, which got water on the floor and I had to change his sheets but he loved it.

Stephanie, his teacher, made huge strides with Jack’s eye gaze computer. She and Kristi customized the buttons he could select and Jack was doing really well. She used switches as well which gave Jack a lot of ways to communicate during a lesson. Stephanie’s sessions with Jack were consistent and he thrived working with her. They connected, it was obvious. And in the Good bye song they ended with each day, where it said “I had fun today”, Jack really did have fun.

Kristi was more adventurous than I and would take Jack on long outings to McDonalds where he loved to watch the kids play.  She said one time when Jack had a motorized wheelchair he ran he over at the park. Thankfully nobody was hurt. Kristi said when Jack was younger he would throw things off his tray and laugh as Kristi repeatedly picked them up. Kristi is one of those people who was born to be a pediatric nurse. She has a demeanor that kids love and trust instantly. Her and Jack were two peas in a pod.

I guess the reason I wanted to talk about Jack’s daily life is because I think he had a good life. He was loved by so many, and that is something many walking/talking people never have.

Taking care of Jack is the most rewarding thing I’ve done in nursing. I loved looking out for him, engaging his intellect, laughing, singing, dancing, reading poetry and just talking.

One time we were listening to some Christian songs and I asked Jack if he thought about God. We just stared at each other for the longest time and I’m sure I saw Jesus himself in Jack’s eyes. He was an amazing young man and my life is so much fuller having known him.

______________________________

BARRY (physician)

I’m a pediatric ICU physician, and was one of the first doctors to take care of Jack in the PICU at St. Louis Children’s Hospital. I helped care for him on and off during his time there, and saw him off when the Schrooten’s returned to Phoenix. I last saw him in 2006. I have been in touch with Ann though all these years, and have seen her several times since I moved to LA about 7 years ago. I’m not sure how Jack ever really felt about me, but Ann seems to have bonded to me – for reasons I’m still not entirely clear about. I will try to tell you though what Jack and Ann have taught me – in person and over distance and time.

I’m going to talk about Jack and Ann, but Mark, Hilary, Mary, and Eric – I know that you have all been part of this journey deeply – it’s just that Jack and Ann have been the Schrootens that I know and have related to primarily for 15 years.

I was actually planning to see Jack next month, but it seems he became impatient with me and decided to make me visit earlier. Teenagers – what can you do?!  

Though unfortunately I have seen many children die, I don’t go to many funerals. Just those of family, unfortunate colleagues or close friends.  In fact this is only the second funeral I’ve ever been to of a patient I cared for. So I’ll do my best to say a few words that have meaning with respect to my role in Jack’s life.  

Physicians in this country are very well “trained” to take care of patients, but not necessarily to care FOR patients and families. I went to medical school for four years, did three years of pediatrics training, two of anesthesiology and two more of pediatric anesthesiology and critical care medicine. And the education goes on and on – it never stops. The science of medicine keeps moving on, and we have to try to keep up with it.  I learned and am still learning new ways to diagnose and treat critical illness in infants and children. But how does a physician ever really learn to care FOR a patient and their family? Sometimes all it takes is ONE patient and ONE family.

For me, I believe, it was Jack and Ann that taught me – or started me on the path of learning this vital and timeless lesson. Because for generations, all that physicians COULD do is care FOR patients – they had few real tools to treat disease until the last century. But once those tools took over medicine, the art of caring seemed to slip away from the bedside. Until patients like Jack and parents like Ann bring it back and hold physicians to it.

What did I learn from this remarkable team of child and mother? How the simplest of gestures can make a tremendous difference in showing respect and caring. Ann relates the story of how one day early in Jack’s course I came in to see him and talk with her. Instead of standing and towering over her as she sat, I pulled up a chair to be at eye level with her. She seemed to think that this was a premeditated gesture on my part of showing caring and respect – that we were on the same level – the same playing field – on the same team. She didn’t realize that I was just tired and wanted to sit down! Plus there was no such thing as a short conversation with the crazy lawyer mom of the cute little boy on the ventilator!

But seriously, once she pointed this out to me – it struck a deep chord in me. For years now, when meeting patients and families, I try very hard to make contact with the patient – even if they are sedated or apparently unresponsive – to let them know who I am and what I’m doing – and then to sit or even squat or kneel next to the sitting parents to talk with them. I now listen differently to parents as they tell me their child’s story – and what their concerns are. The more medically complex the patient, or chronically ill, the more I listen, because Jack and Ann taught me that such parents know their kids better than any doctor or nurse ever could or will.

Now, years later, the pediatrics world is still trying to learn this lesson. When a parent of a hospitalized child expresses a concern – that something is wrong – even if they can’t put their finger on it and there are no “objective” changes in the patient’s condition – doctors and nurses are now taught to pay attention to evaluate these children extra carefully and be prepared to escalate their care quickly. We now have teams in place in most Children’s hospitals that can come to a patient’s bedside quickly to evaluate them for signs of deterioration – just by the parent calling for help. We had to implement these complex systems just to get doctors and nurses to actually LISTEN to mothers and fathers. Unbelievable.

So I got “trained” in this early – by Jack and Ann. They “trained” me to listen to them – carefully – respect their concerns and address them – even if we didn’t have an immediate answer – we paid attention. And of course in Jack’s case it took a really long time to get a true answer for his condition – but we kept listening all along – I hope.

And really that’s all I think I’ve done ever since the Schrooten’s left St. Louis and since I moved to LA. I listen – or I try to.

I wanted to share this line from the 2005 movie “The Interpreter” – with Sean Penn and Nicole Kidman. Hey, I’m in LA now  - you gotta’ mention the movies wherever you go. Briefly, the dictator of a fictitious African country is being forced to read from a book he wrote when he was the young liberator of the country:

But the human voice is different from other sounds. It can be heard over noises that bury everything else. Even when it's not shouting. Even when it's just a whisper. Even the lowest whisper can be heard - -over armies... when it's telling the truth.

So even though Jack’s whispering has ceased – and he was talking all along – just whispering very softly - his voice – and that of his family – has been heard by so many – and moved so many – that we will keep hearing him – and paying attention – for a long, long time. Because I have not kept these lessons to myself – but have shared them with dozens of my colleagues and  trainees over the years. So Jack and Ann have taught physicians – and nurses - they have never even met.

For now Jack, please rest, and for your family, may they also find rest and fulfillment knowing what a rich life they offered to you – and you to them.

Zihkrono livaracha – may his memory be a blessing.

Mary's, Dad's and Mom's Reflections

Below are what Mary, Mark and I shared about Jack at his Celebration of Life.

____________________________

MARY'S REFLECTIONS

Dear Jack,

I tried to write an inspired, eloquent speech explaining the person you are and how much you mean to me. But the truth is, there are no words. Only you will ever understand our bond. So I don’t want to talk ABOUT you, I want to talk TO you. Therefore, I wrote this letter instead.

From the moment I knew you were in Mom’s tummy, I was in love. It wasn’t until we actually met that you stole my heart. You were so tiny, and to be honest Jacky, you were a little scary looking with all those tubes. But they put you in my 5-year old arms and I’ve been hooked ever since.

Over the next 15 years you continued to inspire and teach me. I’ve learned to accept the things I cannot change. I’ve learned the difference a single smile can make. I’ve seen how patient our father is. I’ve witnessed how strong our mother is. You opened my eyes to a world I would not otherwise understand, and for that, I thank you.

It has been such a privilege to be your sister, to have gotten to come home to those twinkling eyes and that beautiful smile every day. Words cannot explain how much I miss you. I hate that we will never be able to take another “selfie” on my phone, that we didn’t get to finish reading Percy Jackson, and that I can’t dance around, singing at the top of my lungs just to hear you laugh. It breaks my heart that you’re not here, but I can’t help but smile knowing that you are pain free and happy up in heaven.

Enjoy those angel wings, little brother, you deserve them.

There is so much I could say, but I’m going to keep it short and sweet.

I want to finish with a quote from “Wonder” by RJ Palacio. It says:

 “The things we do outlast our mortality. The things we do are like monuments that people build to honor heroes after they’ve died. They’re like the pyramids the Egyptians built to honor the pharaohs. Only instead of being made of stone, they’re made out of the memories people have of you.”

I can tell you Jack, that everyone here has the best memories of you. Your monument will be in all our hearts forever.

You are my sunshine sweet boy. I love you to the moon and back.

Until we meet again.

____________________________

DAD'S (MARK'S) REFLECTIONS

For those of you who don’t know me, I’m Ann’s husband and Jack’s dad. I’m not on Facebook, but I can assure you that I do exist.

Let me begin by saying thank you so much for your thoughts, your prayers, your words of encouragement, and your support. I can’t tell you how much your outpouring of love means to us. 

In first John, chapter four, verse 12 it says:

No one has ever seen God; but if we love one another, God lives in us and His love is made complete in us.

We’re here today to celebrate Jack’s life. It’s very difficult for me, but as Ann likes to remind me these days… we can do hard things. We can do hard things.

Speaking of Ann… don’t tell her I said this, but Ann is a truly remarkable person. She has tremendous stamina, she’s determined, she’s incredibly focused, she learns quickly, she’s very decisive, she finds a way around barriers, and she won’t wait for anybody. She is driven to get things done no matter what and she is uncompromising in her passion for doing what’s best for her Jack. She is by far the best possible mom Jack could have asked for. Ann, I thank God that you were chosen to be Jack’s mother and that you loved and cared for Jack like no one else on earth.

I’d also like to say, that along with Jack, we have the best kids in the world. The past 15 years were not easy for them and yet they each understood the challenges we faced and they never once complained about Jack or about the extra care and attention he required. Hilary, Mary, and Eric, thank you for your love and understanding all these years. We simply would not have made it without you. I’m so proud to be your father and I love you with all my heart. You are the joy of my life.

When Jack was a few months old and after we had spent so many weeks in the PICU at St. Louis Children’s Hospital, I remember exactly where I was when it finally hit me that Jack had a very serious disease that would dictate the course of his life. I was devastated. Who could have known then that CMD would dramatically change our lives. More importantly, who knew Jack himself would dramatically change our lives—not so much because of his disease but in spite of it. Over the course of his amazing life, Jack shattered every belief I had about life and about what makes life meaningful.

For one thing, Jack lived in the present every single day of his life. Jack made you feel like you were the only person in the world. When he wasn’t hurting, Jack lived every moment in anticipation that something good was about to happen. Jack had a wonderful sense of humor—he always laughed at my jokes no matter how bad they were and as Angie mentioned, he absolutely loved it when someone else got hurt.

There was something special about Jack that couldn’t be explained by nature or by science or by medicine. It was his spirit which transcended everything.  Galatians chapter 5, verse 22 says:

The fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness, and self-control. Against such things there is no law.

I can’t think of a better way to describe Jack. Jack lived by the Spirit and kept in step with the Spirit his entire life. The laws of nature may have dictated what Jack’s condition would be, but they could never dictate who he was or how he would speak to people, move their hearts, or lift their spirits in such a profound way. Jack taught me that.

Jack, you changed our lives forever and we will never be the same without you. We needed you as much as you needed us. We saved you and you saved us right back. We miss you terribly, but this is not the end. Your journey continues and your legacy lives on and every time I look to heaven I will see your smiling eyes in the twinkling stars above. My heart is breaking, but my soul is soaring with the knowledge that your work on earth is finished and you are finally home.

Thank you, God, for sending us such a perfect gift in Jack.

____________________________

MOM'S (ANN'S) REFLECTIONS

The first thing that comes to my mind as I stand here in front of all of you is, Why did I agree to do this?  I’m a writer. I don’t stand up in front of large groups of people and talk. 

This is totally a Jack thing.  From day one – Jack has pushed me out of my comfort zone. 

I would like to first take some time to thank the people who have helped me along this journey.

I tend to get a lot of the credit for the care provided to Jack during his life because I’m the one who is out there - on the world-wide web sharing Jack and my experiences.  However, let there be no doubt, there wasn’t anything I did for Jack, that I did alone.

First and foremost, but for the grace of God, I would never have been able to get up each day and put one foot in front of the other these last fifteen years. 

Then there is my silent partner – my husband Mark - who always stood with me, by me and – probably most importantly, who knew when to get the hell out of my way.  I couldn’t have chosen a better partner to have traveled Jack’s journey with.

My children, Hilary, Mary and Eric – who gracefully stepped aside and asked so little of their mother who has spent the majority of their lives focused on their brother.

Two very special doctors who have been there for me since the day Jack left St. Louis Children’s Hospital attached to a ventilator – more than 14 years ago. Dr. Barry Markovitz and Dr. Anne Connolly, who thankfully never blocked me from their email, who were always there to lend an ear and to offer advice, support and compassion - especially this last year. 

My sorority sisters, my comrades in arms – where would I be without you? We've all gotten up every morning since our journeys began wondering how we'd make it through another day, and gone to bed every night not sure how we did it.  We did it with the camaraderie and love we so willingly share with each other. 

Jack’s palliative care/hospice doctors - Dr. Wendy and Dr. Shaw - who were there just when I needed them – when it was no longer feasible to travel back to St. Louis with Jack. 

Pam Ruzi – the first social worker I ever agreed to talk with. She also came along at just the right time.

My family, friends and so many others too numerous to name, who have been there to support me along the way.

It took a village to care for Jack and it took a village to carry his mother through these last 15 years.

So, to MY village, I say Thank You!

Now to my sweet Jack.  

I don’t think I will ever be able to adequately put into words the depth of the goodness, beauty and knowledge that child brought into my life.  Jack truly defined what is important in life – simplicity, contentment, patience, perseverance and love.  Jack challenged me on so many levels, he kept me grounded and he has given my life such purpose and direction.  A little boy who spoke no words, spoke volumes by the way he lived each day. 

To acquire wisdom, one must be an observer. Jack was the supreme observer. The wisdom behind his silence was piercing.  There was a spirit about Jack that couldn’t be explained, but could be profoundly felt in our quiet moments together.  I will always cherish those quiet moments, especially those we shared during the last few difficult months of Jack’s life.

For everything Jack gave to enrich my life, I wouldn’t change a thing. For all that Jack had to endure, I would change everything.  Jack faced the hardships of this life with unprecedented joy and grace and he challenged me to do the same.

The loss of Jack is immeasurable.  But, the pain of Jack’s absence is more bearable than the pain of seeing him suffer.  I know the days, months and years ahead will be difficult at times, but I truly find peace in knowing that Jack doesn’t hurt anymore.  And even more than that, that he is now experiencing the indescribable joy of heaven – which he has so rightfully earned.

 

So, where do I go from here?

ONWARD.

With Jack in my heart, I will carry on with a little more kindness, a little more compassion, a little more patience, a little more wisdom and, above all else, I will do my very best to carry on with a SMILE.

And I hope all of you will do the same – in honor of Jack’s memory.