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.



2 comments:

ssouth said...

I loved being able to read through all these again. What wonderful tributes to Jack by those who knew him best. Thank you for sharing them.

Liz Winkler said...

Barry,

I really enjoyed reading your story about Jack and Ann. I also worked with Jack at St. Louis children's hospital as an RT in the PICU. Jack will always be one of my favorite patients at SLCH and Ann one of my favorite parents. I too learned so much from the both of them in similar ways. I was lucky to have been able to take care of such a sweet little boy and meet such a phenomenal mother. Jack taught me to take the extra time and effort with patients who are unable to respond or who's responses are not the usual or expected. Ann taught me to take the time to really talk with the families of these sick kids and listen and respect what they tell you for they know their child better than anyone or any text book. I am glad and grateful I learned this so early in my career, for it has made a huge difference in how I treat and relate to patients and their families. Thanks again for writing this Barry.

Liz Winkler, former RT at SLCH