Sunday, January 26, 2014

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"

Thursday, January 23, 2014

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.


AMY (family friend)

Isn't it amazing how the celebration of a life brings together strangers from far and wide for the same purpose? Jack and the Schrooten's are important to each of us in different ways, but most of us don't even know one another or how we fit into the Wonderful World of Jack. So, as introduction, I, my husband, David, and our daughters, Myra and Emily, were the Schrooten's "go to" and "support" network the day Jack was born.  It was early in the morning on a school day when we got the call to pick up Mary and Hilary at the hospital because Ann was in labor.  Though Jack was premature, initial indications were that all was well.  When it became evident that they were not, our family started down a road with Jack, Ann, Mark, Hilary, Mary and eventually Eric that has challenged and enriched our lives beyond measure.

First, let me acknowledge what a privilege it is to represent our family by speaking here today and thank Mark and Ann for giving us this opportunity.  I've thought long and hard about how to address our dear friends in a way that reflects our bond, brings comfort to them and honors Jack.

I begin by sharing a story.

In 1950 the singing/entertainment team of Dale Evans and Roy Rogers were blessed to bring a little girl into the world named Robin. She was perfect in their eyes and in God's. To the world, she didn't appear so, as she was born with Down's Syndrome. Robin lived just a little over two years. Immediately following her death, her mother, Dale Evans, wrote and published a book that has been read the world over. It literally changed how society viewed these special children. Dale wrote Angel Unaware from Robin's perspective in conversation with God about her experiences on earth and the impressions she had immediately after she had re-joined God in Heaven.

In thinking about the multitude of gifts Jack brought to our world, and how he changed all of us, I was reminded of this book. One of the gifts he couldn't bring to us was that of speech. Just like all of you, when I saw Jack, the first thing I did was look into his eyes to hear what he had to say. We had to interpret for him.  In the spirit of where Dale Evans' imagination and spirit connection guided her, I would like to humbly share with you what I think Jack may like to share with his family and all of us about his time here -- told as best I can muster from a 15-year-old boy's perspective.

Thanks for coming and for being here for my family. This is totally cool, seeing all of you together. There's so much to say and not enough time to do it today, so I have to stick to the basics -- what's most important to me and will help my mom, dad, Hilary, Mary and Eric move forward. So here goes.

First, there's Hilary.

Hilary. I think God had this really awesome plan for all of us when God brought you into the world. Because of you, I think God knew mom and dad would do anything and everything possible to make sure I had all the time I needed to complete my mission.  After all, they moved clear across the country from Phoenix to St. Louis to make sure you got to go to the best school ever to help you. They quit their jobs and completely started a new life. That was pretty awesome. And as it turns out, moving to St. Louis was the best thing for me, too, cuz if not for all the doctors and nurses there, I don't think I would have been able to stay with you guys as long as I did. But back to you, Hilary, because I want you to know how much I admire your talent and strength. You are such a great artist. I saw that from the very beginning. Seeing your pictures made me happy and I always wished I could use my hands to draw like you. Dude . . . keep doing it.

You know, I don't think people understood how connected we are. After all, we both have similar problems communicating the way everyone else does. Here's my most important message for you -- you have the chance to communicate in a way I never could because mom and dad made sure you got the tools you needed to do so. I hope you will honor me by using those tools and connecting with our family and the world so everyone knows how special you are.

Mary. I'm learning from lots of souls here something about being the "middle child." I know being born between me and Hilary hasn't been easy for you cuz mom and dad had to spend so much time making sure we got everything we needed. But gosh, you have done it with so much grace, love and compassion.  Mom, dad, Hilary and I needed you to be a normal kid, and you sure were that. You brought so much life and energy into our house with your big personality. And boy, could you talk! I loved hearing all those (mostly) beautiful sounds that came out of your mouth every single day! Through you, I got to see what it might have been like had I been able to run, walk, dance, sing, eat mounds of Halloween candy, and be in a sugar coma the next day! I know God has a special plan for you. You are a beautiful soul and have lots of gifts to share. Be patient and have faith. I'll always be your biggest fan.

Dad. You so rock. And you are a rock -- for everybody in our family. One of the things I really missed about not being able to talk when we were together was not the actual talking part, but the laughing part. I have to admit that I got a little bored sometimes. Plus, some of the people I was around so much of the time were pretty serious.You are the funniest guy in the entire world. I hope you could see in my eyes the laughing til my stomach hurt, peeing in my pants, obnoxious roaring I was doing so that God and everybody in Heaven could hear. That's the "you soooooo rock" part. Which is totally cool. And it's just one of the ways you showed me what a rock star you are.  I had a lot of time to see what was going on around me, and if it wasn't for you, mom wouldn't have been able to do the job God and I laid out for her. Hilary, Mary and Eric are the luckiest kids in the world with you always, always, always watching their backs and taking care of them. I don't get that whole husband and wife, Mars and Venus thing, so when I ask you to watch mom's back and take care of her, especially now, that's a message God asked me to pass along.

Mom. Or should I say Mother? I am an adolescent boy, after all. And I gotta say, just like nearly every other adolescent boy I've seen since leaving you, I can now confirm with confidence that you really pissed me off sometimes. And you knew it! You clearly saw that in my eyes many times. But what I also know? It's normal. Wow. That's pretty cool. Our relationship was normal . . . at least in that way. What you also have to know is how much I loved you -- to heaven and back. And that you were, and will continue to be, our partner. We couldn't have accomplished everything we did for all my buddies -- both on earth and those rooting for me here in Heaven -- without you. You know I stayed with you as long as I possibly could. I understand how hard it is without me. But nothing changes because I'm not physically in the next room. I'm still there, and I need you to keep working to make life better for all those families like ours.  God is telling me that there are two more messages I'm supposed to share with you. You have to "take time to smell the roses," -- whatever that means -- and you aren't supposed to feel guilty about it. Promise? You've worked so hard for so long, and you need a break. The other message is about that whole husband/wife, Mars/Venus thing. Watch dad's back, too. He did so much behind the scenes so we could do our work.   

Eric. I was so excited when you were born! I finally had a real friend who I could just be with. Thanks for all the time you spent just hanging with me. You da bomb! Even though you had it a little easier than our sisters cuz you didn't know what life was like before I came to be with our family, I know it was tough sometimes. But just like I had a mission on earth, so do you. God sure knows what God is doing, pretty much all the time. And with Mary and Hilary all grown up and figuring out that whole "adult" thing, I'm so happy that you are there with mom and dad. Just because you are you, you will help them figure out how to have more fun, stay young, and get through their sorrow. Hang in, there, bro. And you have fun, too, yanking their chains in a way that I never could. I'll be smilin from here, knowing you're doing it for both of us!

I want to make sure you all know that you are the best family I could have ever asked for. God knew exactly where I belonged, and that we all belonged together. I love all of you, to heaven and back. I know you are sad, but try not to be for too long. I did what I was supposed to do when I was with you, and through all of you, I will keep doing it until we are together again.

Oh, and two last things. Since it is Amy sharing my message to you, I have to give a special shout out to Myra and "uncle" Dave and say a few words about them since they've been with us from the beginning. Dave is almost as funny as you, dad, and probably more silly. He's such a kind soul and understood from the very beginning how important my mission was. And Myra?  From the first time we met when I was a little baby, I felt our connection, and my heart soared whenever I got to see you.  It always made me feel so special because I could tell during our many visits that you really wanted to be with me. Now that I can't be embarrassed by saying this, I've always kinda had a crush on you. 

That's it for now. I'm signing off to go hang with the guys, play a little b-ball, and eat piles of junk food. You're all going to be o.k. And I'm more than o.k. I'm totally stoaked, knowing I did everything I was supposed to do. Now it's up to the rest of you to do what you're supposed to do.

I'd like to finish by sharing a few final thoughts in my own words.

I've often contemplated with awe the impact Jack had on me personally. I knew early on this day would come and struggled like all of you with so many questions left answered only by God. There's one question, however, answered, in my opinion, with certainty. Jack was an angel in the purest form. Sent to all of us who knew him and were changed, and will continue to be changed, by him.  Dale Evans described their little Robin as an "angel unaware." I think Jack knew exactly what he was -- an angel completely aware -- more aware than any of us can conceive. He served us and God well.

May Jack's memory be a blessing for his family, his friends, and for all whose lives are better because he was here.


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.

Tuesday, January 21, 2014

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

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



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.



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.



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?


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.

Sunday, January 19, 2014

Video - Jack's Journey

Video shown at Jack's Celebration of Life 

Jack's Journey

Sunday, January 12, 2014

Jack's Last Day

I want to share with you Jack's last day.  I want to share it, not only because you deserve to hear it, but because I need to tell it.

As I said in my last post, I fully intended to leave Ryan House with Jack.  While things didn't turn out the way I planned, things turned out the way they were supposed to and I'll share with you why.

After a rough Saturday morning, with pain still an issue for Jack, the hospice doctor, Dr. Shaw, increased Jack's pain medication.  Jack slept most of the afternoon and through the night.  He'd open his eyes when we repositioned him or changed him, but for the most part, he appeared comfortable after getting more pain meds on board. Around 6:30am Sunday morning, one of the Ryan House staff woke me up because Jack was desatting and they were having trouble keeping his sats up. The desats on Sunday were different than what we had seen in the past.  Typically when Jack desats, it's due to pain and it's very obvious from his facial expressions that he is in pain.  On Sunday, Jack would open his eyes when he'd desat, but there was no expression of pain.  He was also desatting quickly and significantly - into the 60s and 50s.  It took longer to get him back up when we bagged him.  I called Jack's pulmonologist and asked him if maybe we needed to increase the vent settings because Jack had more pain medication on board.  He had me increase a few settings.  Jack was also requiring significantly more oxygen.  Jack continued to desat throughout the morning.  By noon, he was desatting about every 30 minutes or so and would require bagging to bring him back up.  Again, very different this time because the desats didn't appear to be pain related.  I stayed in Jack's room the entire time because I wanted to be there to bag him when he desatted.  The Ryan House nurse told me that she would stay with Jack and not leave him if I wanted a break, but I couldn't leave him.

That afternoon, I sat down with Dr. Shaw and we talked about what we were seeing.  After observing Jack all morning, what I felt in my heart was that now that the pain was controlled and Jack didn't have to focus so hard on getting through the pain, he was announcing himself and he was telling us he was tired. He was just so damn tired.  Dr. Shaw agreed.

Those close to me know that my biggest fear was that some day we would have to make the decision to discontinue ventilatory support.  It made me angry just thinking about having to make that decision.  Having made the difficult decision to put Jack on the ventilator fifteen years ago, there is no way we should now be asked to discontinue that support.

Recognizing that Jack was telling us he was tired and ready to go, Dr. Shaw and I talked about how it would be if we decided it was time to make the difficult decision.  I called Mark and asked him to come down to spend some time with Jack because he needed to see what was going on so that we were both in agreement with any decision to be made.  In my mind, any decision to be made would be made Monday or even later in the week because Dr. Shaw was going to give Jack some different meds to see if they would help improve his breathing.

After Mark got to Ryan House, I went home and called Jack's St. Louis neurologist. We talked, she agreed with me, she agreed with Dr. Shaw and she cried.  No sooner had I hung up from talking to Jack's neurologist, then I got a text from Mark that said Dr. Shaw thinks I should get back to Ryan House as soon as possible.  I grabbed Hilary and Eric, called my sister, my aunt, Kristi, close friends and had someone go get Mary from work and told everyone to get down to Ryan House if they wanted to see Jack. When I got to Ryan House, I saw Jack's nurse come out of Jack's room and I fearfully asked her if he was still here.  She said yes, but she told me that Dr. Shaw (who had since left) wanted to talk to me on the phone.

During the time Mark was with Jack after I left, Jack was desatting about every 15 minutes and it was taking a very long time to bring him back up with bagging.  I got on the phone with Dr. Shaw and she said that she thinks Jack is trying to tell us he is ready to go now.  It wasn't possible - or fair to Jack, to continue to bag him indefinitely.  I have to share with you that by this point, Jack had already begun his final journey. There was no longer any recognition in his eyes.

It took about an hour for all my family to arrive.  They moved Jack's bed to a room called the Sanctuary - a large room where families can gather.  I told them I wanted to hold him, so they handed him to me and took the bed out of the room.  They gave him additional meds to make him comfortable. What is significant at this point, is that the ventilator was no longer supporting Jack.  He'd desat and we would bag him and then reconnect him to the vent, but he couldn't sustain his sats beyond a minute or so. The last hour of Jack's life, I held my precious son on my lap and Mark bagged him while we waited for all my family and Dr. Shaw to arrive.  The vent was on, but was not connected to Jack.  By this time, I took the pulse-ox probe off Jack and threw it.  I didn't care what his numbers were.  It just didn't matter anymore.  Once Dr. Shaw arrived, she gently took the ambu bag out of Mark's hand and Jack was finally free.  Dr. Shaw listened to Jack's heart several times before she told us it had stopped beating.  At 6:55 pm, Jack was safe in the arms of our heavenly Father.

Dr. Shaw told me that Jack did not take a single breath after we stopped bagging him.  He was so done.  The final gift my beautiful boy gave us was that we didn't have to make the decision to remove him from the ventilator.  Jack made that decision himself. There was absolutely nothing we could do to get the ventilator to support him even if we had wanted to.

I would never have believed there could be such a thing as a "peaceful death" if I hadn't seen it with my own eyes.  Jack's death was remarkably peaceful.  I'm glad the kids were there to see it, so they could see the peace and not be afraid that it was a scary time for Jack.

I held my precious boy for a couple of hours and Mark and I had time alone with him after everyone left.  The hardest thing I ever had to do in my life was give him over to the mortuary people.  I will never touch him, smell him or care for him again.  I find myself going into Jack's room all the time to check on him. But, he's not there.

When I say I find comfort in knowing that Jack is no longer in pain, that he is at peace and enjoying the rewards of heaven, I don't say that lightly or as a way to console myself.  I know with absolute certainty that Jack is no longer in pain, that he is at peace and that he is in a most amazing place. And that knowledge is the ONLY thing that gives me the strength to go on.

So it must be ...

Onward my friends, onward.

Thursday, January 09, 2014

Another Beautiful Tribute to My Sweet Jack

Written by a comrade in arms.  Thank you for the gift of your beautiful words Eric.

Wednesday, January 08, 2014

Jack's Obituary

Jack's Reach

Words shared by my friends and fellow bloggers about our sweet Jack.

Monday, January 06, 2014

For Those Not on Facebook

For those who aren't on Facebook.
My sweet, beautiful Jack did things his way, and he is now HOME resting in the arms of our heavenly Father  - pain free and at peace.

I'll share more at a later time.

Thank you for all your love along this journey. 


Leaving Ryan House for the last time without our precious boy

Saturday, January 04, 2014

New Year

The last day of 2013 and the first days of this New Year have not been good days for Jack.  It’s not much of a Happy New Year around here. 

Last Saturday, they switched Jack to a fentanyl patch for pain management.  The first three days he did remarkably well.  Mark and I were both amazed at how good Jack looked.  I thought we’d found the ticket for a good run of pain control. Unfortunately, on day three of the patch, the pain came back with a vengeance.  The last few days have been some of the worst for Jack as far as pain. We just couldn’t seem to get ahead of the pain and we were having to bag him pretty consistently to calm him.

The hospice nurse visits Jack once a week to assess him and see how he is doing.  She only sees a snapshot of his week and it’s difficult for her to get an accurate picture of how he’s really been doing.   I called her on Friday rather desperate to do something to get Jack’s pain under control.  It was suggested that we bring Jack to Ryan House for pain management.  I agreed.  The only problem was, I didn’t have transportation because our van has engine issues and we haven’t made it a priority to get it serviced because Jack hasn’t been able to travel.  Fortunately, we were able to be transported to Ryan House via ambulance. 

We gave Jack a hefty dose of morphine before we left and he slept well last night.  Today, he showed them why we are here.  He had another very rough morning.  The hospice doctor doubled his fentanyl patch, morphine and ativan and he finally fell asleep this afternoon and he’s still sleeping.  There is a plan in place to try and get a handle on his pain, but it’s really going to be a day-to-day thing, reassessing as we go along.  I don't plan on leaving here until his pain has been appropriately managed for several days because I don’t want to get home and find ourselves in crisis mode again.  We’re technically here under hospice care for pain management, not for respite care. Although, I’ve been able to get some rest being here.

Jack is suffering and he’s weary.  I look into his eyes – those eyes that have been his voice his entire life and I see how tired he is.  He’s so, so tired.  Yet, it’s agonizing to have to make the decision of when to say “enough” and not feel like I’m giving up on him.  I’ve spent the last 14 years, 6 months and 27 days doing everything in my power to keep my child alive – literally.  5,324 days of threading a suction catheter down his airway 50+ times a day to clear the secretions so he can breathe, of managing ventilator settings, of bagging him through periods of respiratory distress, of pouring liquid nutrition into his stomach, of advocating with insurance companies, medical professionals, nursing agencies and DME companies to make sure he receives nothing but the best care possible.  How do I stop now? How am I supposed to do this? 

I don’t know how to do this. 

The decision to come to Ryan House is for pain management.  I fully intend on leaving here with Jack.  I’ve got to believe that the hospice team can get his pain under control – that’s what they do.  We’re just not ready to make the difficult decisions yet.  We need more time.

And, for the record, I lied.  Yes, Jack will be okay when he leaves this earth, but I will not be.  Contrary to popular belief, I’m not strong.  I’m crumbling from the inside out and it won’t be long before I can no longer hide it from the outside world.

I’m hopeful that tomorrow will be a better day for Jack.  


On arrival at Ryan House