tag:blogger.com,1999:blog-299166802024-03-12T18:46:19.063-07:00Jack's Journey and Then SomeJACK'S JOURNEY AND THEN SOMEAnnhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.comBlogger843125tag:blogger.com,1999:blog-29916680.post-59949960301874235522021-04-28T08:33:00.032-07:002022-11-03T10:17:42.303-07:00Jack's Legacy<p>After almost six years, the book that was once just an idea has now become a reality. <b><i>Shared Struggles: Stories From Parents and Pediatricians Caring For Children With Serious Illnesses</i></b> is available for purchase on Amazon and the Publisher's (Springer) websites. </p><p>Here are the words I shared on Facebook - I think they best describe my emotions at this time: </p><p>"I just want to share that reading the back cover and the words that I have "over 15 years of experience interacting with pediatric subspecialists and other healthcare professionals who cared for her son." sounds so foreign to me after so many years of being away from "the life." There were many times I questioned my authority to have any say in the stories and experiences shared. And yet, when I started writing my commentaries ... the words flowed. Because I did understand the experiences shared and I also understand that this book is more than just an opportunity to bring parents and physicians together, it is an extension of why I was given Jack and why I was given the connections he brought to me and why I was given the lessons I learned as his mom. This is not my book and will never be my book - it is OUR book. But it is also Jack's legacy and a reckoning for me of the "why" of all the hard that came with being Jack's mom. The opportunity for this book came because Jack lived AND because Jack died. The price was high (too high), but to be given the opportunity to find the good in the hard is a gift I will never take for granted and will always thank God and Jack for. Onward my friends and thank you!"</p><p style="text-align: center;">____________</p><p>Order on <a href="https://www.amazon.com/Shared-Struggles-Pediatricians-Children-Illnesses/dp/3030680193" target="_blank">Amazon</a> or on <a href="https://www.springer.com/us/book/9783030680190" target="_blank">Springer's website</a> </p><p><br /></p><p><span style="background-color: white; color: #050505; white-space: pre-wrap;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-WUOK9C3bXK8/YIl_RINFI-I/AAAAAAAAJy4/JsQzioTVXoAqsAkqz-AXDSAss0AjzeizACNcBGAsYHQ/s2007/Book%2BCover%2B%252800151122xEC0B8%2529.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1417" data-original-width="2007" height="282" src="https://1.bp.blogspot.com/-WUOK9C3bXK8/YIl_RINFI-I/AAAAAAAAJy4/JsQzioTVXoAqsAkqz-AXDSAss0AjzeizACNcBGAsYHQ/w400-h282/Book%2BCover%2B%252800151122xEC0B8%2529.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">_____________</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Beautiful Foreword by Christopher Adrian MD</div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p style="text-align: center;">FOREWORD</p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: left;"><span> <span> <span> My mentor in palliative care fellowship once told me that most of what we do as palliative care providers can be summed up as helping the hospital learn and understand what's going on in the patient's room. By "the hospital" he meant the whole panoply of medical and psychosocial care providers assigned to the patient, orbiting near and far from the bedside, anybody who might open up one of our consult notes to read the documentation of conversations in which we asked parents to tell us about their hopes and worries, about the sources of their strength and support, and most importantly, about who their child is, not as a patient, but as a person, because a parent's portrait of a child is a portrait of a parent's values and a family's values. By "the room" he meant not just the space enclosed by the four brightly colored walls, but the emotional and spiritual milieu in which the patient and family lived, loved, and hoped - the ordinary physical space being a metonymy for an extraordinary metaphysical space that housed not just the bodies of a patient and their family, but also their stories and their spirits. </span></span></span><br /></div><div class="separator" style="clear: both; text-align: left;"><span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><span> </span><span> This book is an exquisite collection of just that kind of story. To read it is to learn just how much goes on inside "the room," just how rich and terrifying and beautiful any one family's experience of the hospital can be, how totally different every family is in their unique phenotype of daily struggle and triumph, how very much the same they are in the example of profound loving they make to us all. </span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><span> </span><span> But this book collects the story of what's going on in another room, one that intersects and overlaps with the physical and metaphysical spaces of the patient's room. The doctor's room is a workroom on the unit, but also the empty storeroom into which they might retreat to collect their thoughts and feelings, or the car in which they make their commute, and like the patient's room, the doctor's room expands to encompass their home, their own family, their friends. It is the head-space and the heart-space in which they attend to the patients and families under their care. </span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><span> </span><span> To collect and juxtapose these stories is already to make something beautiful for the world at large and useful for the community of care for children with serious illnesses and their families. But "Shared Struggles" takes the risk of committing itself to reconciling these stories, by means of parent and physician commentary which engage with the content from positions of equal and complimentary expertise. That risk elevates the beauty and use of the book such that it becomes something entirely astonishing and necessary and completely one-of-a-kind: a textbook of connection between the lived experience of each party, a reconciliation that is the fundamental act of pediatric medicine. </span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><span> </span><span> As pediatric medical providers, we talk about the art of medicine as something we practice upon patients, not often recognizing that patients and families, and parents especially, practice their own art of medicine, not on their children or themselves, but upon us. They are called to manage us, in the course of their child's illness, just as much as we are called to manage their children, as they partner with us in loving care, seeking always to find a way to accept the help we offer while protecting their child from any harm we might do. You cannot tell someone how to practice such an art any more than you can tell them how to be compassionate, or empathetic, or kind. But that doesn't mean instruction is impossible. Such attributes, and such art, can be fostered and encouraged into sturdy practice. You can't simply tell someone how to make a genuine connection with their patient, how to shape their professional boundaries, not as lines in the sand, but as contours along the heart. You can't just tell someone how to balance advocacy for their child with trust for a provider, how to put faith in the love of a stranger for their child and never lose faith with oneself. But you can certainly show them how to do it, as this collection shows us, with unparalleled richness and sincerity, over and over again. </span><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span><br /></span></div><div class="separator" style="clear: both;"><span>________________</span></div><br style="text-align: left;" /><p style="text-align: left;">We need this book to get into the hands of every pediatric residency program, medical school, nursing school, parents of children with chronic complex conditions, and all those who care for and love our children. Please share and if you have any questions or need information, please contact me via email @ schrooten[dot]ann@gmail[dot]com. </p></div><p><span style="background-color: white; color: #050505; white-space: pre-wrap;"></span></p><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="font-family: inherit;"><br /></span><p></p>Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com0tag:blogger.com,1999:blog-29916680.post-17632169409836979402014-11-02T18:26:00.001-07:002021-04-28T08:15:35.398-07:00For Everything There is A Season<br />
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<i><span class="Apple-style-span" style="font-family: inherit;">A time to be born, and a time to die. </span></i></div>
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Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com2tag:blogger.com,1999:blog-29916680.post-1163253303443103042014-09-10T22:40:00.004-07:002014-09-10T22:40:41.519-07:00So I Write AgainHere is where you will find me<br />
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<span class="Apple-style-span" style="font-size: large;"><i><a href="http://www.inchingonward.blogspot.com/">INCHING ONWARD</a></i></span></div>
Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com0tag:blogger.com,1999:blog-29916680.post-17504229336654072232014-06-26T22:46:00.002-07:002014-06-30T09:59:07.423-07:00Permission, Thank You and Signing OffWe are almost to the six month mark without my beautiful boy. I don't even know how I've survived this far in a semi-functioning state. If nothing else, the last fifteen years certainly prepared me to get up each day, put one foot in front of the other and keep on keeping on whether I want to or not. I guess I can do hard things, right?<br />
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Since Jack died, many people have shared with me their thoughts on where I should go from here, what I can do next and how I can share Jack's journey going forward. I love and appreciate the people who love and care for me. However, I decided early on that for at least the next year I'm giving myself permission to not have a plan. Permission to not try and make sense of this journey, of Jack's life or of Jack's death. I'm giving myself permission to grieve and be sad and unfocused and angry. You have to know that there is no one who places more demands on or who has higher expectations for me than me. But I'm cutting myself some slack because I just can't make sense of it all right now and I can't pretend everything is okay.<br />
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I started this blog almost eight years ago with the intention of keeping family and friends updated on Jack's spinal fusion surgery. After surgery, I continued to write and share Jack's journey and inevitably, my journey as Jack's mom. Based on the connections I made through Jack's blog and the feedback from those who followed Jack's journey, I felt that I had something to offer. My experience as a seasoned parent of a child with complex medical needs helped some people. I appreciate that Jack and the Internet gave me that opportunity. I appreciate that people came to know and love Jack through this blog. But, Jack's journey is over. This blog was never about - or was never intended to be about, me. What made Jack's journey unique was Jack. I can assure you that there is nothing unique about my "journey" without Jack. One thing that has been made abundantly clear to me is that grief is universal, it's predictable and it's by the book. If you want to know how I'm doing, you can pick up any book on grief after the death of a loved one and you will know how I'm doing. I'm not unique. I'm by the book.<br />
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What I have learned over the last almost six months is that there is a threshold for how much of my story and my grief most people can bear to hear. I get it, I honestly do. I'm living the life that is every parent's worst nightmare. My child died. It's something many of my friends have contemplated, faced, and feared. I make it too real. I get it. <br />
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Which brings me to this: I'm giving myself permission to close out my writing on this blog. I really feel like there is nothing more I have to share. I miss Jack, I ache for Jack and I cry for Jack every single day. There are only so many ways I can say this. It will never change. I suppose that over time, my aching and crying may ebb, but my missing and grieving the loss of Jack will never end. I will never be the same person I was before Jack died. The grief of losing a child is inexplicably different than the grief that comes with being the parent of a child with special/health care needs.<br />
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I belong to a different club now. I went by the cemetery this evening on the way home from work. As I was sitting at Jack's grave, a woman came up to me and asked about Jack because she had noticed that he was young. I knew of her because I heard that she sits at her daughter's grave for hours every single day. I learned that her daughter was killed over two years ago in a car accident at the age of 20. I learned that her daughter attended the same high school as Hilary and Mary and was there the same time my girls were. I learned that years two and three post-death are harder than year one. I immediately connected with this woman and we talked for close to an hour because we belong to the same club. We are the mothers of children who died too soon.<br />
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I'm not going to stop writing, but moving forward, I will write privately and make decisions as time goes on as to what I want to do with what I've written over the last eight years and what I have yet to write. For those who are on Facebook, I will continue to share pictures and updates of our life without Jack. I'm not checking out - I'm just opting to be more private. I know I have in real life friends who aren't on Facebook and who follow this blog. For you, please feel free to email or call me anytime. I'm happy to share updates.<br />
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As I sign off, I tender a heartfelt "Thank You" to everyone who has followed Jack's journey. Your care, concern, support and love have unquestionably carried me through the most difficult times of my life. I love you and I appreciate you.<br />
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For the remainder of my days on this earth, I will miss my Jack, I will ache for my Jack and I will cry for my Jack. But, sustained by his spirit, I will continue to inch <i>ONWARD.</i><br />
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<i>ONWARD, </i>my beautiful and amazing friends, <i>ONWARD</i>.Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com11tag:blogger.com,1999:blog-29916680.post-69846260836446253502014-06-06T22:08:00.000-07:002014-08-23T10:15:32.097-07:00Heaven<div class="separator" style="clear: both; text-align: center;">
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When Jack was inpatient at Phoenix Children's Hospital those many weeks in August-September of 2012, someone brought me the book "Heaven is for Real" to read. She said she pulled it off the shelf not knowing what my faith or beliefs were. It was exactly what I needed to read at the time. After reading that book, I searched out and read every book I could find about heaven. I read stories based on real life near death experiences and I read books based on a biblical foundation. Not surprisingly, I found the stories written by regular people who experienced near death experiences to be the most comforting.<br />
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Shortly after we transitioned Jack to palliative care and our focus shifted to less about intervention and more about comfort, I felt drawn to talk to Jack about heaven. There were so many times when I'd get up close to Jack's face, look into those soulful eyes and want to talk about heaven, but I couldn't get the words out. Talking to Jack about heaven meant that I had to acknowledge out loud that Jack was going to die. I didn't want him to think that I was ready for him to die or that I had given up on him.<br />
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Then, one day I was finally able to do it. I told Jack that there was this amazing place called heaven where he would be able to talk, and breathe without a machine. A place where he could run and jump and play. A place where there was no pain. I told him he didn't need to be afraid. The tears filled my eyes as I looked into Jack's eyes - those eyes that held more knowledge than I could begin to understand. I tell you in all honesty that no sooner had I uttered the word "heaven", then Jack's face lit up with a smile. Right then and there, I knew there was absolutely nothing I could tell Jack about heaven that he didn't already know. Right then and there, I knew with certainty that Jack was <a href="http://www.jack-schrooten.blogspot.com/2013/02/of-few-things-i-am-certain.html"><b>heaven sent</b></a> and he knew exactly where he was going once he finished his earthly journey. From that point forward, I knew that no matter what, Jack was going to be okay. He knew it and I needed to believe it.<br />
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The tears that fall on a daily basis are not for Jack, they are for me. I miss Jack something fierce. Are there moments when I question whether there really is this place called heaven? Sure there are. But, then I close my eyes and picture that all-knowing smile Jack gave me when I talked to him about heaven, and I believe. I believe Jack is safely Home. He is Home and one day we will be together again. I believe it.<br />
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In the meantime, this pretty much sums it up ...<br />
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<i>Homesick by MercyMe</i></div>
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<br />Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com2tag:blogger.com,1999:blog-29916680.post-40103241796544426392014-05-29T22:32:00.001-07:002023-08-05T08:44:05.668-07:00Jack's Journey - The Early Years Part III<!--[if gte mso 9]><xml>
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<span class="Apple-style-span" style="font-family: inherit;">After three months in the
Pediatric Intensive Care Unit (PICU) and a third failed extubation, I resigned
myself to the fact that the only way Jack was ever going to get home was with a
trach. Shortly after they reintubated Jack, I conceded and said “okay” to the
trach. Fearing I might change my mind, the PICU staff couldn’t get the consent
prepared fast enough. Later in the day, I saw Jack’s cardiothoracic surgeon in
the hallway and when I told him I signed the <i style="mso-bidi-font-style: normal;">damn consent</i>, he just smiled. </span></div>
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<span class="Apple-style-span" style="font-family: inherit;">Surgery for the trach was several
days later. After Jack came out of surgery, I was standing at his bedside just
trying to take it all in when one of the PICU <a href="http://medical-dictionary.thefreedictionary.com/fellow">fellows</a> came over. I commented to
her that I’m sure they were glad that I finally agreed to the trach. Her
response is something that I’ll never forget. She said, <i>“You haven’t made one wrong
decision regarding Jack.”</i> It meant a lot to me that she understood how difficult
a decision it was for me to agree to the trach and that she was compassionate enough
to validate my decision-making process. Although I never saw her again, I still
remember her name after all these years.<span style="mso-spacerun: yes;">
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<i>day of trach surgery</i></div>
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<span class="Apple-style-span" style="font-family: inherit;">The day of Jack’s trach surgery
was also the day of Mary’s kindergarten graduation.<span style="mso-spacerun: yes;"> </span>Jack was out of surgery about an hour before I had to leave
to get to Mary’s school.<span style="mso-spacerun: yes;"> </span>I didn’t have time to dwell on all that had transpired that day because I had to
suck it up, put on my happy face and do my best to be present for Mary. I’m
sure it was the first of many times after Jack was born where I fell short in
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<o:p><span class="Apple-style-span" style="font-family: inherit;"><i> my beautiful kindergarten graduate</i></span></o:p></div>
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<span class="Apple-style-span" style="font-family: inherit;">Jack remained in the PICU
following his trach surgery. We spent the next few weeks mostly learning how to
suction him. We had to do at least one trach change before we could take him
home, which I eventually did, although it’s not something that I have any
recollection of. The PICU intensivist asked whether I wanted to do an overnight
in the hospital with Jack before we took him home. My answer was an unequivocal
“No!” I was sick of hospitals and the last thing I wanted to do was spend the
night in one. I knew that Jack would have nursing at home, so I didn’t feel
compelled to participate in a trial run on my own. Thankfully, they never pushed the issue with me. </span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span class="Apple-style-span" style="font-family: inherit;">Because Jack was coming home on a
vent, someone had to manage him and his vent after he left the hospital. A pulmonologist typically follows kids on vents and I was asked who I wanted to follow
Jack.<span style="mso-spacerun: yes;"> </span>Over the course of the many
months that Jack was in the PICU, I had encountered all of the pulmonology
<a href="http://medical-dictionary.thefreedictionary.com/attending+physician">attendings</a> and there wasn’t one that I particularly cared for and there were a
few I flat out didn’t like.<span style="mso-spacerun: yes;"> </span>My
answer to the question of which pulmonologist did I want to follow Jack was
“none of them”. Now what? I was given the name of a pulmonologist who managed a
lot of vent kids, but she worked out of a different hospital.<span style="mso-spacerun: yes;"> </span>I called her office and was told she wasn’t
taking any new patients. Strike two. Apparently, the PICU staff knew I was serious when I said I
didn’t want any of their pulmonologists to follow Jack because one morning, one
of the PICU intensivists came up to me and said that he would follow Jack on
the vent if I wanted him to.<span style="mso-spacerun: yes;"> </span>He
told me that he would enlist one of the PICU fellows and together they would
manage Jack’s vent. It was unconventional, but I jumped at the
offer. To this day, I don’t know why this particular intensivist offered to
manage Jack’s vent, but I can tell you that fifteen years later, this same
physician spoke at Jack’s funeral. </span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span class="Apple-style-span" style="font-family: inherit;">Jack’s remaining days in the PICU
were spent weaning him off the vent during the day, re-introducing him to the
bottle now that there wasn’t a tube down his throat, and sessions with physical
and occupational therapy. </span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span class="Apple-style-span" style="font-family: inherit;"><i>hospital PT</i></span></div>
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<a href="http://3.bp.blogspot.com/-z4Wmo6dotx4/U4gOUMFDbVI/AAAAAAAAFgA/DCi73goi8vk/s1600/SCAN0109.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-z4Wmo6dotx4/U4gOUMFDbVI/AAAAAAAAFgA/DCi73goi8vk/s1600/SCAN0109.JPG" width="261" /></a></div>
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<br /></div>
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<span class="Apple-style-span" style="font-family: inherit;">On the home front, we worked on
getting nursing set up and all his durable medical equipment and supplies
ordered and delivered. The day the home (portable) ventilator was delivered to
the house, I had to be there so that the respiratory therapist with our
equipment company could give me an orientation on the workings of the vent. I
remember trying to listen to the guy with tears rolling down my face. I so did
not want to do this! I don’t think I heard much of what he had to say.<span style="mso-spacerun: yes;"> </span><a href="https://www.blogger.com/blogger.g?blogID=29916680" name="_GoBack"></a></span></div>
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<br /></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">The week before Jack’s discharge,
a woman showed up at Jack’s bedside in the PICU and introduced herself as the
nurse manger for the agency that would be providing nursing care for Jack after
his discharge. I was so overwhelmed with the fact that my kid had a trach and
was hooked to a machine that I didn’t really pay much attention to what she had
to say. I think I just stared at her the whole time with a shell-shocked look
on my face. My past experience with nursing when Jack was discharged with only CPAP
was not a positive one, but I knew this time around, I could not go it alone. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">Whether I was ready or not,
Jack’s discharge date was scheduled for Tuesday, June 8, 1999. I booked flights
for me to fly the girls out to Phoenix the weekend before Jack was to come
home. I thought it would be easier if the girls weren’t underfoot while we
tried to adjust to the insanity that was about to take over our house. A few
days before we were to fly to Phoenix, I was feeding Jack his bottle and I
noticed that there was formula leaking out around his trach. I pointed it out
to the nurses, a dye test was ordered and sure enough, Jack was aspirating his
formula. Knowing that Jack’s discharge date was less than a week away, they
scheduled Jack for g-tube surgery immediately. I was in Phoenix the day of the
surgery and it was the only time that I wasn’t with Jack for surgery or a procedure. <o:p></o:p></span></span></div>
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<br /></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">Discharge day arrived and the mood
in the PICU was almost party-like. I’m not sure if they were happy that Jack
was finally going home or if they were just glad to finally be rid of me! Pictures
were taken and notes were written in a memory book. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><o:p><span class="Apple-style-span" style="font-family: inherit;"> <i>discharge day</i></span></o:p></span></div>
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<a href="http://3.bp.blogspot.com/-BIQM-BmBaG0/U4gODqRgN3I/AAAAAAAAFfI/CNLc4M_-pm0/s1600/8+years.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="276" src="http://3.bp.blogspot.com/-BIQM-BmBaG0/U4gODqRgN3I/AAAAAAAAFfI/CNLc4M_-pm0/s1600/8+years.jpg" width="400" /></a></div>
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<br /></div>
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<i>one of Jack's primary nurses came in on her day off to say good-bye</i></div>
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<a href="http://3.bp.blogspot.com/-Zk7lCF2o0pA/U4gONNVB2iI/AAAAAAAAFfY/FXO1lEuKe6E/s1600/8+years+005.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-Zk7lCF2o0pA/U4gONNVB2iI/AAAAAAAAFfY/FXO1lEuKe6E/s1600/8+years+005.jpg" width="265" /></a></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<i>sporting the hat given to him by Dr. Garcia - the PICU fellow who </i></div>
<div class="separator" style="clear: both; text-align: center;">
<i>was going to follow Jack on the vent at home</i></div>
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<a href="http://2.bp.blogspot.com/-7S0sv0I2bRE/U4gOQTeZA5I/AAAAAAAAFfg/0yNWVsLDmRU/s1600/8+years+004.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="http://2.bp.blogspot.com/-7S0sv0I2bRE/U4gOQTeZA5I/AAAAAAAAFfg/0yNWVsLDmRU/s1600/8+years+004.jpg" width="400" /></a></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<i>Jack and Dr. Garcia</i></div>
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<a href="http://4.bp.blogspot.com/-AuXbGcJEHFs/U4gP5ZMePtI/AAAAAAAAFgs/5CNUTgmsN70/s1600/8+years+001.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-AuXbGcJEHFs/U4gP5ZMePtI/AAAAAAAAFgs/5CNUTgmsN70/s1600/8+years+001.jpg" width="271" /></a></div>
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<br /></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">We loaded Jack and several carts
full of his stuff in the car and drove away from what had been Jack and my home for most
of the last six months. Jack was discharged on trach collar only. No ventilator
(or nurse) accompanied us in the car on the way home. We arrived to an empty
house with a ventilator that I had no idea how to use sitting on a cart in our
living room next to Jack’s crib.<o:p></o:p></span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
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<i>the car ride home</i></div>
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<a href="http://2.bp.blogspot.com/-pKxRnjGjzlU/U4gN_YL5NFI/AAAAAAAAFe4/U2hVPTCY7Og/s1600/8+years+003.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://2.bp.blogspot.com/-pKxRnjGjzlU/U4gN_YL5NFI/AAAAAAAAFe4/U2hVPTCY7Og/s1600/8+years+003.jpg" width="265" /></a></div>
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<br /></div>
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<br /></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">About an hour after we arrived
home with this child we didn’t have any clue what to do with, the same nurse
who introduced herself at the hospital a few weeks prior, knocked on my door.
She took one look at Jack and knew he was having trouble breathing. I, on the
other hand, was clueless. She hooked him up
to the ventilator and the pulse-ox. I, again - clueless. </span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><i>Jack hooked up to his "portable" ventilator and pulse-ox. </i></span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><i>Can you say "overwhelming"?</i></span></span></div>
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<a href="http://1.bp.blogspot.com/-ZilhZ9KUqdU/U4gOIePob-I/AAAAAAAAFfQ/ZSaLpas8wjc/s1600/8+years+002.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="277" src="http://1.bp.blogspot.com/-ZilhZ9KUqdU/U4gOIePob-I/AAAAAAAAFfQ/ZSaLpas8wjc/s1600/8+years+002.jpg" width="400" /></a></div>
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<br /></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">The nurse stayed until later that evening when another nurse showed up to take
over for her. The night nurse was confident, talkative and very much “in
charge”. She also happened to be the owner of the nursing agency. She was a
former Cardiac PICU nurse at St. Louis Children’s Hospital who decided to open
her own nursing agency. She and I
immediately clicked. She worked almost all my night shifts during Jack’s first
month home and I often stayed up into the wee hours of the morning just talking
with her. All the nurses who worked Jack’s case were an invaluable source of
training, information and support to me.<o:p></o:p></span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><i>Jack and his nurse Holly</i></span></span></div>
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<a href="http://2.bp.blogspot.com/-HhJG82NfQtc/U4gPLJXCQ0I/AAAAAAAAFgo/6fwSn3MlTDg/s1600/Holly.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://2.bp.blogspot.com/-HhJG82NfQtc/U4gPLJXCQ0I/AAAAAAAAFgo/6fwSn3MlTDg/s1600/Holly.jpg" width="260" /></a></div>
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<br /></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">The first summer home with Jack was
a huge learning curve, but I eventually became comfortable with the vent, the
trach, the pulse-ox, the g-tube and all things Jack. There were many emails and
phone calls exchanged with the PICU intensivist and fellow who were following
Jack on his vent. I've saved almost all of the emails between Jack’s
doctors and me over the last fifteen years, including the first email I sent to the PICU
intensivist with an update on Jack. His response:<o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">Thanks
for the update. I’m glad he’s doing well overall. Of course babies change and
events happen, but when we send home an infant on a ventilator and he/she is
able to stay home for the first few weeks, ie, they don’t need to be readmitted
for some emergency right away, we feel this is a good sign. Go Jack go! <o:p></o:p></span></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></i></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><o:p><span class="Apple-style-span" style="font-family: inherit;"><i> our first summer home with Jack pics</i></span></o:p></span></div>
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<a href="http://4.bp.blogspot.com/-9enchHv0aP8/U4gOT6Pz5dI/AAAAAAAAFf0/EyJBFWNCXwA/s1600/SCAN0108.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-9enchHv0aP8/U4gOT6Pz5dI/AAAAAAAAFf0/EyJBFWNCXwA/s1600/SCAN0108.JPG" width="270" /></a></div>
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<a href="http://1.bp.blogspot.com/-a8St9HD3pEs/U4gOUI91UEI/AAAAAAAAFfs/flYtIk9it7s/s1600/SCAN0110.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://1.bp.blogspot.com/-a8St9HD3pEs/U4gOUI91UEI/AAAAAAAAFfs/flYtIk9it7s/s1600/SCAN0110.JPG" width="252" /></a></div>
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<br /></div>
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<a href="http://3.bp.blogspot.com/-RH7APFfNTW8/U4gOVYFOZkI/AAAAAAAAFgU/JMTXkJLbYUM/s1600/SCAN0113.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-RH7APFfNTW8/U4gOVYFOZkI/AAAAAAAAFgU/JMTXkJLbYUM/s1600/SCAN0113.JPG" width="256" /></a></div>
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<br /></div>
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<a href="http://2.bp.blogspot.com/-okWcYrvqlr8/U4gOVy9IWGI/AAAAAAAAFgQ/-obMwgXmIPw/s1600/SCAN0114.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="271" src="http://2.bp.blogspot.com/-okWcYrvqlr8/U4gOVy9IWGI/AAAAAAAAFgQ/-obMwgXmIPw/s1600/SCAN0114.JPG" width="400" /></a></div>
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<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">Jack made it through the entire summer before we found ourselves back in the PICU. This time for reasons other than
respiratory. </span></span><br />
<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span>
<span style="mso-bidi-font-family: "Century Gothic"; mso-bidi-font-size: 14.0pt;"><span class="Apple-style-span" style="font-family: inherit;">Stay tuned.<o:p></o:p></span></span></div>
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____________________________________________</div>
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<br /></div>
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<br /></div>
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<br /></div>
<div class="MsoNormal" style="text-align: left;">
I realize these early years posts are ridiculously detailed and, therefore, long. But, the fact is I remember so many minute details of much of Jack's life. I guess that's why we were so connected. I think the further out we get from Jack's first year, the less detail I'll have to share. In the meantime, bear with me and thanks for reading. </div>
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<br /></div>
<!--EndFragment-->Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com2tag:blogger.com,1999:blog-29916680.post-67933484925232514312014-05-18T17:45:00.002-07:002017-05-18T09:25:30.789-07:00My TruthIt's been said that writing is storytelling that connects people through telling one's truth. So, I write what has been foremost in my mind lately. It's not exactly an uplifting piece, but it's my story. My truth.<br />
<br />
<div style="text-align: center;">
_____________________________</div>
<div style="text-align: center;">
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-EB2Xc162N44/U3lJcOO_wvI/AAAAAAAAFek/x0p0linOUTo/s1600/sorry-650x650.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-EB2Xc162N44/U3lJcOO_wvI/AAAAAAAAFek/x0p0linOUTo/s1600/sorry-650x650.jpg" width="320" /></a></div>
<br /></div>
<br />
As I held Jack in my arms during his final hours, all I could say to him over and over again was <i>"I'm Sorry"</i>. <br />
<br />
Since that day, I've thought a lot about what I'm sorry for.<br />
<br />
I'm sorry he was born with such an unforgiving disease.<br />
<br />
I'm sorry he was hurting and he couldn't tell me where it hurt or how it felt.<br />
<br />
I'm sorry I couldn't stop the pain.<br />
<br />
I'm sorry I couldn't make him better.<br />
<br />
I'm sorry I couldn't find doctors who could make him better.<br />
<br />
I'm sorry for all the things he tried to tell me and I didn't understand.<br />
<br />
I'm sorry for those times I wasn't as patient and gentle with him as I could have been.<br />
<br />
I'm sorry I went to work and didn't stay home with him those last months of his life.<br />
<br />
I'm sorry I didn't spend every night sleeping with him during his final months.<br />
<br />
I'm sorry I didn't crawl into bed with him at Ryan House and hold him every second of his final days.<br />
<br />
I was sorry I left his side at all during his final days.<br />
<br />
I'm sorry I didn't talk to him more his last day.<br />
<br />
I'm sorry I didn't touch him more his last day.<br />
<br />
I'm sorry I didn't know it was going to be his last day.<br />
<br />
But, despite all the things I'm sorry for,<br />
<br />
I can say with certainty what I'm not sorry for.<br />
<br />
I'm not sorry that January 5th was his last day<br />
<br />
Because,<br />
<br />
I'm not sorry that he is no longer hurting.<br />
<br />
I'm not sorry that he is in his heavenly home and experiencing the joy of eternal life.<br />
<br />
I'm not sorry he is finally free.<br />
<br />
<i>I miss him. I ache for him. I cry for him</i>. Every single day.<br />
<br />
But, I'm not sorry he is finally free.<br />
<br />
<div style="text-align: center;">
<i>ONWARD.</i></div>
<br />Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com4tag:blogger.com,1999:blog-29916680.post-90637580044639234092014-05-07T11:46:00.000-07:002014-05-07T20:23:35.370-07:00Ryan House Speech<div class="MsoNormal" style="line-height: 115%; text-align: justify;">
The words of my speech for the <a href="http://ryanhouse.org/events/2014-community-breakfast/">2014 Ryan House Community Breakfast</a>:<br />
<br />
<span style="line-height: 115%;"><span style="font-family: inherit;">____________________________</span></span><br />
<span style="line-height: 115%;"><span style="font-family: inherit;"><br /></span></span>
<span style="line-height: 115%;"><span style="font-family: inherit;">Good morning. It’s an honor to share with
you our family’s Ryan House story. <o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 115%; text-align: justify;">
<span style="line-height: 115%;"><span style="font-family: inherit;">My husband, Mark and I are the
parents of four children. Our third child – our son Jack, was born with a rare
form of muscular dystrophy. Because of his disease, Jack suffered from severe
muscle weakness that caused him to need a tracheostomy and the assistance of a
ventilator to help him breathe. Jack was unable to walk or talk, he was fed
through a feeding tube and he was dependent on others in every aspect of his
life. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">Our family has been a Ryan House
family since the day it opened its doors. I first heard about Ryan House about
five or six years before it opened from an article that was published in the
Arizona Republic. At that time, Jack was six years old and based on my own
experience as the parent of a child with complex medical needs and in knowing
other parents of medically complex children, I understood firsthand the
importance and tremendous need for respite. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">Although he may not remember, I sent
Jonathan Cottor an email after reading the Arizona Republic article and
Jonathan called me and we talked on the phone about what he and Holly
envisioned for Ryan House. I was so impressed with Jonathan and Holly and their
vision and anxiously awaited the day that Ryan House would become a reality. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">On March 27, 2010, our family was
there when Ryan House opened its doors for its Open House. Two weeks later, we
spent our first weekend at Ryan House. One of the things that really stood out
to me that first weekend was that the staff repeatedly asked “What can we do
for Jack?” and “What can we do for you?” It was unfamiliar to me to entrust my
child’s care to someone else and have them actually ask ME what was important
to me and my son. Before Ryan House, the
only time Jack was in the care of others outside of our home was when he was in
the hospital – which is not a place where a parent’s voice is often heard. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">The kindness and compassion of the
Ryan House staff that weekend and every weekend thereafter was a blessing to
this weary parent. Over the last three – almost four years, Jack spent many
weekends at Ryan House. There were weekends when my husband and I and Jack’s
younger brother, Eric would stay at the house. Most times, though, just I would stay at Ryan
House with Jack and enjoy the peacefulness of the family suite. I treasured the
uninterrupted nights of sleep, while Jack was in the caring and competent hands
of the Ryan House nurses. There were also weekends when we’d leave Jack at Ryan
House and travel out of town with our other children. Ryan House allowed us to spend quality time
with our other kids, who often had to take a back seat to Jack’s intense
medical needs. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">The Ryan House staff came to know and
love Jack over the years. Even though Jack couldn’t talk, he communicated with
his eyes and his smile. One of Jack’s
favorite things to do was listen to music and, thanks to his dad’s influence,
Jack loved to listen to the Beatles. When Jack stayed at Ryan House, the staff
always had the Beatles playing on the iPad for him. Even the music therapist, Danielle, would
play Beatles songs for him on her harp. Jack loved it! <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">The Ryan House staff and volunteers
embraced Jack and they embraced our family. Ryan House became a safe haven we
could retreat to . . . a place where we
all felt loved and well cared for. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">Last year, Jack’s health began to
decline and, in September, we transitioned him to hospice care. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">The first weekend in January of this
year, we brought Jack to Ryan House with the intention of staying just a few
days while we worked on getting a pain management plan in place. </span></span><span style="font-family: inherit; line-height: 115%;">Unfortunately, things didn’t go as
planned and, on Sunday, January 5, 2014, our sweet Jack passed away in the
Sanctuary Room at Ryan House as I held him in my arms, with his dad, sisters,
brother, grandfather, aunts, uncles, cousins, and friends surrounding him.</span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">I believe with all my heart that Jack
made the decision to make his final journey home that weekend while at Ryan
House because he knew Ryan House was the best place for his family to be during
his final days and after he left us. The care, compassion and patience that was
extended to Jack, to me and to our entire family that weekend truly carried us
through the most difficult and painful experience of our lives. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">It seemed only right that the people
who had brought so much rest and comfort to our family over the last three
years, were there to comfort us as we said good-bye to our son. I will be
forever grateful to Ryan House for all they did for Jack and for our family
during Jack’s final days. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">After Jack died, I received a letter
from one of the Ryan House volunteers, who was affectionately known as “Grandma
Bev”. I’d like to share with you what she wrote:<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;"><i>“Jack was my first child to care for
as a Ryan House volunteer. I can’t
explain it, but someway, somehow, our hearts, spirits and souls touched. His
smile melted me and I was hypnotized by his beautiful eyes. I read many books
to him and he would make ME so happy, when I was trying to make HIM happy. One day, we went into the Sanctuary room and I
turned on the player piano and asked him if he would dance with me. He gave me
that endearing smile and we danced every dance we could! I thank God for giving
you both such an amazing child to raise. I thank you both for loving and
raising him so well and I thank Jack for teaching me so much about love and
life.”</i><o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">Families like mine need Ryan House
volunteers like Grandma Bev - and all the volunteers who give of their time and
their hearts to our children. Families like mine need Ryan House nurses like
Melissa, April, Amanda, and Rachel, and CNAs like Kasha who possess the
understanding and compassion that allows us to confidently surrender our
child’s care to them. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">Families like mine NEED Ryan House.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">Over the last 15 years, our family
has been touched by many wonderful organizations that help children with special
health care needs, but no organization has supported or touched our family more
than Ryan House.</span></span></div>
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<span style="line-height: 115%;"><span style="font-family: inherit;">So, in closing, I want to say “THANK
YOU” to Jonathan and Holly Cottor for your vision, to the Ryan House staff for
your care and compassion, and to all of you who make the gift of Ryan House
possible because of your love, your time and your financial support. </span><span style="font-size: large;"><o:p></o:p></span></span></div>
Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com3tag:blogger.com,1999:blog-29916680.post-2533946151060746502014-05-04T21:08:00.000-07:002014-05-05T07:39:03.076-07:00Inching Onward<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-J54lZ7sV7gQ/U2cKnvcXQOI/AAAAAAAAFd0/j1gnmpXTXX4/s1600/IMG_1997.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-J54lZ7sV7gQ/U2cKnvcXQOI/AAAAAAAAFd0/j1gnmpXTXX4/s1600/IMG_1997.JPG" height="320" width="240" /></a></div>
He's been gone four months. Why does it feel like it's been an eternity? <span style="font-family: inherit;">I've been told more than once that grief is a process. A </span><i style="font-family: inherit;">process</i><span style="font-family: inherit;"> is defined as </span><i style="font-family: inherit;">"a systematic series of actions directed to some end."</i><span style="font-family: inherit;"> Does grief ever really come to an end? Life is a process. Grief is an inevitable part of this process called life. I suppose what people are trying to tell me is that grief doesn't occupy a fixed set of time with a beginning and an end. One's grief ends only when one's life ends. Some days it's overwhelming and some days it's bearable. But, it will always be.</span><br />
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<span class="Apple-style-span" style="font-family: inherit;">Understandably, I do better when I'm away from what holds the most memories of Jack. The hardest place for me to be is home. But, I can't escape out of town every weekend, so I've got to learn how to be home and be okay. I've just now gotten to where I can sit down in the family room and turn on the television. Television and Jack go hand in hand because it's what he enjoyed most. I don't sit for very long, but at least I'm sitting down with the television on. I don't know if I'll ever be able to watch another Disney movie again, though. I've heard good things about the movie, <i>Frozen</i>, but Mark and I can't bring ourselves to buy it because Jack is not here to watch it with us. </span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span>
<span class="Apple-style-span" style="font-family: inherit;">I'm finally able to spend some time in Jack's room. Jack's room is the master bedroom on the first floor and I'm forcing myself to carry the clean clothes from the laundry room into Jack's room where I'll fold them on his bed. I need to make myself spend time in Jack's empty room because maybe, just maybe, one day I'll be able to feel Jack's presence surround me there. </span><br />
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I've also been able to go through Jack's clothes. Jack's neurologist offered to have her sister make me a blanket out of Jack's shirts and other special items of clothing. Unfortunately, I got rid of many of my favorite shirts of his over the years because he outgrew them. (Silly me, I should have known that I was going to need those shirts for a memory blanket one day!) <insert face="" here="" sarcastic=""> I gave what I could bear to part with to Jack's neurologist when I saw her last month. I still have the pair of pants that Jack wore his last day, I can't give those up or even wash them. They are the only thing I have left that holds Jack's scent. I have them tucked away under the pillows on his bed and I'll pull them out and hold them close to my face when I need to feel Jack close to me. </insert><br />
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This weekend, I took the monumental step of giving away most of Jack's vent, trach and feeding supplies. I gave them to a family who lives near me and whose daughter also suffers from a muscular dystrophy and is on the same vent as Jack was. I kept some supplies because I'm just not ready to let everything go. It took me years to accept so much of what was necessary to keep Jack alive and it might just take me years to let it all go. <br />
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Next weekend we have an appointment to finalize the design of Jack's headstone and get it ordered. Having only a temporary marker doesn't feel right, it feels unfinished. We just need to get it done.<br />
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When you have a child with special/medical needs, you often measure their progress in terms of what we refer to as "inchstones". When you lose that child, I think it's fair to say that you can measure your own progress forward on the grief journey in terms of inches. I've achieved a few of my own inchstones this last month. I can only hope that Jack is as proud of me and my inchstones as I was of him and his.<br />
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I miss him. I ache for him. I cry for him. But, as difficult as it is, I'm ...<br />
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<i>Inching</i> Onward.<br />
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As you may recall, my friend Eric wrote <a href="http://iamabrokenmanyoucantbreakme.blogspot.com/2014/01/jack.html"><b>a poem about Jack</b> </a>after he died. Eric recently published a collected work of his poetry spanning the years 1995 through 2014. I ordered the book and my copy arrived yesterday. I was incredibly touched to read that several of Eric's poems were inspired by Jack, namely: "Jack", "Brave", "Good Tidings", "Carry On" and "One More Minute". Eric is an incredible and selfless father to his disabled son, Segev and he is a gifted and beautiful writer. I encourage you to order Eric's book <a href="https://www.createspace.com/4652145" style="font-weight: bold;">here</a>. You won't be disappointed. </div>
<br />Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com2tag:blogger.com,1999:blog-29916680.post-19652130313879451872014-04-27T18:48:00.001-07:002014-04-28T07:10:46.445-07:00Ryan House Community Breakfast<div class="separator" style="clear: both; text-align: center;">
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To all of my local (Phoenix area) friends: Please consider coming to the <a href="http://ryanhouse.org/events/2014-community-breakfast/"><span class="Apple-style-span" style="font-size: large;"><i>Ryan House Community Breakfast</i></span> </a>on May 7th at the Arizona Biltmore. The breakfast is free and it's an opportunity to find out more about what Ryan House does and to hear Ryan House stories - including ours. I have been asked to speak at the breakfast - so, show up and support me! </div>
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I promise to update the blog soon, but know that I am doing okay. I miss Jack every day and always, but find that the knock me to my knees pain of his absence isn't as intense as time goes on. We spent Easter weekend in Sedona, which is as close to heaven - and Jack, as you can get. </div>
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<i>beautiful Sedona</i></div>
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<i>Hiking through Oak Creek Canyon - West Fork Trail</i></div>
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End of the trail - we built a Cairn for Jack</div>
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I also left two stones in the creek (the other side of the "Onward" stone says "Love Jack")</div>
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<i> Chapel of the Holy Cross</i></div>
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<i>inside the Chapel</i></div>
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xoxo</div>
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Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com2tag:blogger.com,1999:blog-29916680.post-86149199834579692362014-04-13T18:49:00.003-07:002014-04-18T07:23:31.658-07:00Unburdened<div class="separator" style="clear: both; text-align: center;">
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I have returned from my week in St. Louis. I'm generally not a person who looks for or believes in signs from those who have gone before us. However, if I was such a person, I would have to say that there were many things I saw and experienced last week that had Jack written all over them. So, for the moment, I choose to believe that my beautiful boy was traveling alongside me, giving me signs and leaving me messages he surely knew I needed to receive.<br />
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It has been quite some time since I've attended a place of worship and while I have a strong faith, I don't have a strong attraction to buildings where people gather to worship. However, while in St. Louis, I took the opportunity to attend two different services, both of which seemed to speak to me. On Friday evening, I attended Shabbat service with our friends David and Amy. I loved everything about it - the music, the readings and the feeling of community. During the <i>d'var Torah </i>(sermon), the Rabbi shared a story of a family in the congregation who had recently lost their son to cancer and the message was about being there for others in their time of loss. Such an appropriate message as I sat between my two dear friends who have been there for us and supported us since the day Jack was born.<br />
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On Sunday, I spent the entire day with Jack's neurologist. When I asked her if she would have some time to see me during my visit, I didn't expect her to give me an entire day of her time. We started the day by attending Mass together at a beautiful old Catholic church on the campus of St. Louis University. The sermon that day was about friendship. The message wasn't lost on of either of us, as we both recognized the friendship we share. We spent the rest of the day together - talking, visiting the Missouri Botanical Gardens and raising our beer glasses in a toast to Jack at a local Irish pub. <span class="Apple-style-span" style="font-family: inherit;">While we talked about many things, I did ask her to put on her physician hat at one point because there were two things I needed to know from her: (1) what she believed caused Jack to be in so much pain; and (2) why was Jack no longer able to be supported by the ventilator at the end. In her opinion, both came down to heart failure. What she explained to me made sense. (She <i>is</i> one of the top neurologists in the country, so I suppose she should make sense.) I needed to know and believe that there wasn't anything more I could have done for Jack - something I hadn't yet been able to find peace with. She gave me answers that I could accept.</span><br />
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During my week in St. Louis, I shared memories and tears with some of Jack's former nurses, both home health nurses and hospital nurses. I spent a couple of days with <a href="http://jack-schrooten.blogspot.com/2006/08/our-dear-friend-peggy.html"><b>Peg</b></a>, enjoyed time with my sweet friend Jenny, went on a couple of great hikes and was pampered by our friends, David and Amy. I'm so grateful for all the love and memories shared with "Jack's people".<br />
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The most emotional day for me was the day I spent on the St. Louis Children's Hospital campus. I started the day by meeting Jack's neurologist for an early lunch (apparently, she wasn't tired of me yet). As we were walking back from lunch, she pointed out a willow tree, not knowing its significance to me. I didn't recall seeing the willow tree during our last visit to Children's and I probably wouldn't have even noticed it if Jack's neurologist hadn't pointed it out to me.<br />
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After saying good-bye to Jack's neurologist, I went by the eye clinic and left an "Onward" stone for Jack's ophthalmologist and then to the ENT clinic where I gave an Onward stone to the trach nurse and also left one for Jack's ENT. I included a note with the stones so they would know the meaning behind the "Onward" message. I walked around the hospital, as much as I could, and spent some time in the chapel where I had prayed so many unanswered prayers. I walked around the Washington University Medical School campus and went by the Central Institute for the Deaf - the place that brought us to St. Louis in the first place. So many memories as I was walking around. Thinking more about the significance of the willow tree on the campus of St. Louis Children's Hospital, I felt moved to bury an Onward stone at the base of the tree. What better way to push <i>Onward</i> than to leave all the burdens and painful memories with the willow tree. <i>Ever Bending, Never Breaking</i>. A sign from Jack? I'd like to believe so.<br />
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<i>where I buried the stone</i></div>
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After I buried the stone, I stood by the tree and listened to a song on my playlist titled "Fly Away". The song is on an album of lullabies that I would listen to with Jack. When that song would come on, especially during Jack's final days, I would imagine Jack flying away to heaven - away from all the pain and hardships of his life. I stood by the tree and allowed the tears to fall.<br />
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I will be honest and tell you that after being back at St. Louis Children's and seeing so many children who are enduring many of the same challenges as my sweet Jack, I walked out of the doors for the last time knowing that I'm glad to be done with it all. I'm glad for Jack to be done with it all. No more medical people. No more x-rays, ct scans, echos, bronchs, anesthesia, surgeries, blood draws, IVs, wheelchairs, trachs and vents. No more trying to outrun a disease that was always going to win in the end. Yes, I would do it all over again and yes, I would continue to do it all if Jack was still here. Yes, I will always profoundly miss my beautiful son, but I don't wish him back here. He is free and that gives me peace.<br />
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<span class="Apple-style-span" style="font-family: inherit;">Spending last week in St. Louis was very healing for me. The word that best describes how I feel after talking with Jack's neurologist and getting the answers to my questions, after being back at Children's Hospital, and after leaving it all at the base of the willow tree is <i>"UNBURDENED". </i>I feel like I was able to let go of so many emotions - not the least of which is guilt. I finally feel some peace for Jack and for me. I also feel like I'm going to be okay. </span><br />
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I've heard people say that a cardinal represents a loved one who has died. The picture at the top of this post was taken while walking through the Missouri Botanical Gardens with Jack's neurologist. A sign from Jack? I'd like to believe so.<br />
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<i>hiking along the bluffs overlooking the Meramec</i></div>
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<i>St. Louis Children's </i></div>
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<i>chapel</i></div>
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<i>Central Institute for the Deaf - old entrance</i></div>
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<i>new entrance</i></div>
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<i>hike with Jenny</i></div>
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Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com3tag:blogger.com,1999:blog-29916680.post-71747971150066891282014-04-03T01:23:00.001-07:002014-04-25T09:57:54.596-07:00Jack’s Journey – The Early Years Part II<!--[if gte mso 9]><xml>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>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.</span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I’ll write Part I at a later time.<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><i><b>JACK’S JOURNEY –
THE EARLY YEARS, PART II</b></i><o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>Jack required a small amount of oxygen
to keep his O2 saturations at an acceptable level.<span style="mso-spacerun: yes;"> </span>At the time, I thought lugging around
an oxygen tank in the freezing cold and snow was the biggest inconvenience of
my life. (Ha!)<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> (Clearly, this was before I appreciated the importance of a pulse-ox.) </span>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.<span style="mso-spacerun: yes;"> </span>When I looked into Jack’s crib he
wasn’t moving and his color was ashen.<span style="mso-spacerun: yes;"> </span>I picked him up and he was as limp as a ragdoll.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>The vascular
ring was compressing Jack’s trachea and esophagus - an explanation for Jack’s
difficulty with eating and breathing.<span style="mso-spacerun: yes;"> </span>On January 18, 1999, Jack had surgery to divide the vascular ring.<span style="mso-spacerun: yes;"> 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. </span><o:p></o:p></span></div>
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<i>post-op vascular ring division</i></div>
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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.</div>
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<span class="Apple-style-span" style="font-family: inherit;"><i><br /></i></span>
I was so wrong.</div>
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<i>finally off the ventilator post-op</i></div>
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<a href="http://3.bp.blogspot.com/-xdZUHXiZG9s/Uz0PWwEJwvI/AAAAAAAAFXk/1AX1GPhYfEk/s1600/SCAN0032.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-xdZUHXiZG9s/Uz0PWwEJwvI/AAAAAAAAFXk/1AX1GPhYfEk/s1600/SCAN0032.JPG" height="261" width="400" /></a></div>
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<o:p><span class="Apple-style-span" style="font-family: inherit;"><br /></span></o:p></div>
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<i></i></div>
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<i><br /></i></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Damage to the phrenic nerve is a known risk of cardiac
surgery. Just one of the many breaks Jack never got.</span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><a href="http://4.bp.blogspot.com/-fUAwZbfK7bI/Uz0PVyIchwI/AAAAAAAAFXQ/jEz-bAPaO-M/s1600/SCAN0028.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-fUAwZbfK7bI/Uz0PVyIchwI/AAAAAAAAFXQ/jEz-bAPaO-M/s1600/SCAN0028.JPG" height="288" width="400" /></a></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><a href="http://2.bp.blogspot.com/-NfuP_OFLGh4/Uz0PtoMxNZI/AAAAAAAAFYo/hjGfqhqvFMM/s1600/SCAN0030.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-NfuP_OFLGh4/Uz0PtoMxNZI/AAAAAAAAFYo/hjGfqhqvFMM/s1600/SCAN0030.JPG" height="400" width="270" /></a></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><a href="http://2.bp.blogspot.com/-mmrrMrs1EuQ/Uz0PYxz4ovI/AAAAAAAAFYI/zVEJEFHOyHw/s1600/SCAN0036.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-mmrrMrs1EuQ/Uz0PYxz4ovI/AAAAAAAAFYI/zVEJEFHOyHw/s1600/SCAN0036.JPG" height="263" width="400" /></a></span></div>
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<br />
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<o:p><span class="Apple-style-span" style="font-family: inherit;"><br /></span></o:p></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>On March 7, 1999, Jack was intubated
and placed on the ventilator. Jack never again breathed without the assistance
of a ventilator. <o:p></o:p></span></div>
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<br /></div>
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<br /></div>
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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. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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Following
surgery on March 30, 1999, another attempt was made to remove Jack from the
ventilator.<span style="mso-spacerun: yes;"> </span>Again, Jack failed
extubation.<span style="mso-spacerun: yes;"> </span>At this point, the
PICU team asked for neurology to consult because they felt that Jack
demonstrated low tone and muscle weakness.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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<span style="mso-spacerun: yes;"><i>resting post-op diaphragm plication</i></span></div>
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<a href="http://1.bp.blogspot.com/-1cKWDVNsGWs/Uz0PXqNQIgI/AAAAAAAAFYY/-Aqb5VuSfiQ/s1600/SCAN0033.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-1cKWDVNsGWs/Uz0PXqNQIgI/AAAAAAAAFYY/-Aqb5VuSfiQ/s1600/SCAN0033.JPG" height="277" width="400" /></a></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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<br /></div>
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<span class="Apple-style-span" style="font-family: inherit;">As a side note, this was the beginning
of me making waves when it came to Jack and his care.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Plus, he adored Jack.<span style="mso-spacerun: yes;"> </span>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!<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">But, I digress. <o:p></o:p></span></div>
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<br /></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>Again, Jack failed.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><i>on high dose steroids and miserable</i></span></span></div>
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<br /></div>
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<br /></div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<i>last failed attempt at extubation before trach</i></div>
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<a href="http://2.bp.blogspot.com/-rFyLRbe832M/Uz0PZlTtouI/AAAAAAAAFYg/2gxtNGjVVsM/s1600/SCAN0039.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-rFyLRbe832M/Uz0PZlTtouI/AAAAAAAAFYg/2gxtNGjVVsM/s1600/SCAN0039.JPG" height="265" width="400" /></a></div>
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<br /></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>My prayers went
unanswered.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span class="Apple-style-span" style="font-family: inherit;">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. </span><span style="font-family: "Century Gothic";"><o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
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<br /></div>
<!--EndFragment-->Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com3tag:blogger.com,1999:blog-29916680.post-87424524311494552522014-03-30T15:35:00.002-07:002014-04-02T11:59:56.808-07:00More of the Same<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I miss Jack.</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I will always miss Jack. I’ll continue to say it and I’ll
continue to write it.<span style="mso-spacerun: yes;"> </span>Bear with me
because me missing Jack will never change.<span style="mso-spacerun: yes;"> </span>I was at the cemetery today and saw a banner with
information for a “Grief Recovery” support group.<span style="mso-spacerun: yes;"> </span>Really? As if it’s even possible to "recover" from the death of my child.<span style="mso-spacerun: yes;"> </span>One doesn’t <i>recover</i> from grief, one merely
learns to live with it. Okay, maybe it’s just semantics, but the message bothered
me.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">The days continue to be hard. I’ve cried more in the last two
and a half months than I have the last 15 years.<span style="mso-spacerun: yes;"> People h</span>ave been telling me for years how strong I am and, yet, I never felt strong. I just did what I had to do for Jack. Jack was my
motivation and my inspiration. Without
Jack, I have to tap into every ounce of strength I do have just to get out of bed and
give a damn. People tell me that Jack is still with me – in my heart.<span style="mso-spacerun: yes;"> </span>Sorry, I just don’t feel it.<span style="mso-spacerun: yes;"> </span>I don’t feel him at all. I think he
must be mad at me. In the end, I couldn’t help him. I couldn’t keep him from
dying. The guilt can be overwhelming at times.<span style="mso-spacerun: yes;"> </span>That’s probably what I need to work on more than
anything<span style="mso-spacerun: yes;"> </span>- letting go of the
guilt.<span style="mso-spacerun: yes;"> </span>I trust that time will get
me there. <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I spend a lot of time at the cemetery.<span style="mso-spacerun: yes;"> </span>I go by in the morning on the way to
work, at night on the way home from work, and at least once, sometimes more, on
the weekends.<span style="mso-spacerun: yes;"> </span>The cemetery is
about a mile and a half from our house, so I will often walk up there on the
weekends.<span style="mso-spacerun: yes;"> </span>Hanging out at a
cemetery is not something I ever thought I’d do. Then again, I’ve never buried
a child before, so what did I know. <span style="mso-spacerun: yes;"> </span>It’s another one of those things that I’m guessing time will
heal and, eventually, I won’t feel the pull to go there as often. I don’t know.
I don’t know much when it comes to this leg of the journey.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><i>Today's view</i></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-KYLx2-K-gQM/UziXDFkJ9GI/AAAAAAAAFWE/BpOol2L6EeI/s1600/IMG_1835.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-KYLx2-K-gQM/UziXDFkJ9GI/AAAAAAAAFWE/BpOol2L6EeI/s1600/IMG_1835.JPG" height="640" width="480" /></a></div>
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<span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I’m heading to St. Louis at the end of this week. I’ll be there
for a week and I’ll be spending time with “Jack’s people”. I’ll be visiting St.
Louis Children’s Hospital, handing out “Onward” stones and just walking around
the campus and visiting the places Jack and I used to hang out when we were
there. Hopefully, it will be a sunny day because I’ll need to wear my
sunglasses to hide all the tears I expect will be falling.<span style="mso-spacerun: yes;"> </span>It sounds strange to say I’m going to
miss SLCH. But, those of you who have medically complex children understand the
connection to a hospital and the medical team that cares for your child. Saying
goodbye to SLCH is another painful step in the journey of letting go and learning
to live life without my sweet Jack. </span></div>
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<span class="Apple-style-span" style="font-family: inherit;">Finally, I was going through my old text messages on my
phone and went back to January 5<sup>th</sup> – the day Jack died. The text messages between Mark and me
are tough to read. With Mark’s ok,
I’m sharing them. I'm sharing them mostly for me because I want to preserve as much of this journey as I can and, as painful as these are, they need to be saved.</span></div>
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<i>(As I shared in <a href="http://www.jack-schrooten.blogspot.com/2014/01/jacks-last-day.html"><b>Jack's Last Day</b></a>, the decision to remove Jack from the vent never had to be made by us. Jack made that decision himself)</i></div>
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Thank you for all your love and support. You help me to push <i>Onward</i>. xo</div>
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<!--EndFragment-->Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com6tag:blogger.com,1999:blog-29916680.post-5333117387679710272014-03-17T12:18:00.002-07:002014-03-17T19:18:19.673-07:00Missing My Irish Angel<blockquote>
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<i>When Irish eyes are smiling,</i> </div>
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<i>Sure,'tis like the morn in Spring.</i></div>
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<i>In the lilt of Irish laughter,</i> </div>
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<i>You can hear the angels sing. </i></div>
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Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com2tag:blogger.com,1999:blog-29916680.post-24355716794615974402014-03-13T22:20:00.000-07:002014-03-15T13:31:49.902-07:00EmotionsWe'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.<br />
<br />
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. <br />
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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.<br />
<br />
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.<br />
<br />
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:<br />
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<i>And when great souls die,</i></div>
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<i>after a period peace blooms,</i></div>
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<i>slowly and always irregularly.</i></div>
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<i>Our senses, restored, </i></div>
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<i>never to be the same, whisper to us.</i></div>
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<i>They existed. They existed.</i></div>
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<i>We can be. Be and be better.</i></div>
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<i>For they existed.</i></div>
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We can, indeed, be and be better because Jack existed.</div>
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Onward. </div>
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<br />Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com3tag:blogger.com,1999:blog-29916680.post-7934781181717453302014-03-03T00:06:00.001-07:002014-03-04T14:04:17.925-07:00The New Days of Our LifeI'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.<br />
<br />
Life without Jack is monumentally different. I didn't just lose the companionship of my son, I lost my life. For fifteen years, <i>everything</i> 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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 <a href="http://www.caregifted.org/">Caregifted</a> are creating, titled <a href="http://www.caregifted.org/undersung-the-film/">Undersung</a>. 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.<br />
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In the meantime, you know what we must do ....<br />
<br />
Keep pushing <i>ONWARD</i> my friends.<br />
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the pictures of Jack that we had made for his funeral are now hanging in his room</div>
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My irrational self bought a jar filled with solar powered lights </div>
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to light Jack's grave at night</div>
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drove by tonight to see if the lights worked - they did!</div>
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we put the "Onward" stone in the jar</div>
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My final tangible reminder of Jack - his thumbprint </div>
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(the heart is from my friend <a href="http://www.lifesinceharlie.blogspot.com/">Christy</a> - it stands for "finding beauty in the brokenness") </div>
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<br />Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com6tag:blogger.com,1999:blog-29916680.post-29473692624915092402014-02-19T22:00:00.003-07:002015-07-22T23:21:42.256-07:00Because It's All I Can Do Right Now<!--[if gte mso 9]><xml>
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<span class="Apple-style-span" style="font-family: inherit;">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. </span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span><span class="Apple-style-span" style="font-family: inherit;">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 <i>live</i> life again.</span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span><span class="Apple-style-span" style="font-family: inherit;">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. </span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span><span class="Apple-style-span" style="font-family: inherit;">Because that's all I can do right now.</span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span>
<br />
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********************</div>
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<span class="Apple-style-span" style="font-family: inherit;">Dear Ann,</span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><i><span class="Apple-style-span" style="font-family: inherit;">(Former SLCH PICU Intensivist - not the same person who spoke at Jack's funeral)</span></i><o:p></o:p></span><br />
<span class="Apple-style-span" style="font-family: inherit;"><i><br /></i></span><span class="Apple-style-span" style="font-family: inherit;"><i><br /></i></span></div>
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<i><span class="Apple-style-span" style="font-style: normal;">********************</span></i></div>
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Dear Ann,</div>
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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.</div>
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"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." (<i>Eskimo Proverb)</i></div>
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<i>(SLCH ophthalmologist)</i></div>
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********************</div>
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Dear Ann,</div>
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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.</div>
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<span class="Apple-style-span" style="font-family: inherit;">With deep respect and admiration, I wish you strength.<o:p></o:p></span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><i>(former SLCH cardio-thoracic surgeon)</i><o:p></o:p></span></div>
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<o:p><span class="Apple-style-span" style="font-family: inherit;"> </span></o:p>********************</div>
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Ann,<br />
<br />
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 <u><span style="mso-bidi-font-style: italic; mso-bidi-font-weight: bold;">never</span></u> 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.<br />
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none;">
<span class="Apple-style-span" style="font-family: inherit;"><i>(former SLCH pulmonologist)<o:p></o:p></i></span></div>
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<i><span class="Apple-style-span" style="font-style: normal;">********************</span></i></div>
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<i><span class="Apple-style-span" style="font-style: normal;"><br /></span></i></div>
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<span class="Apple-style-span" style="font-family: inherit;">Dear Ann,</span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">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 </span>(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.<br />
<br /></div>
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<span class="Apple-style-span" style="font-family: inherit;"><i>(Urologist)</i><o:p></o:p></span></div>
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<o:p><span class="Apple-style-span" style="font-family: inherit;"> </span></o:p>********************</div>
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<span class="Apple-style-span" style="font-family: inherit;">Dear Ann,</span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">My heart is breaking as I read your note. </span>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.</div>
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<span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: inherit;">Thank you so much for reaching out. Please know that you and your family are in our thoughts today and in our hearts forever.<o:p></o:p></span><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: inherit;"><i>(SLCH – media relations person)</i></span><span style="font-family: "Arial Black";"><o:p></o:p></span></div>
<!--EndFragment-->Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com6tag:blogger.com,1999:blog-29916680.post-35526790725947873702014-02-14T06:30:00.001-07:002014-02-14T19:37:31.718-07:00Jack's Celebration of Life (Edited)<!--[if gte mso 9]><xml>
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<span class="Apple-style-span" style="font-family: inherit;">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. </span></div>
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<iframe allowfullscreen="" frameborder="0" height="360" src="//www.youtube.com/embed/5OGIRcROFrY?rel=0" width="640"></iframe><span class="Apple-style-span" style="font-family: inherit;">Program</span></div>
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<a href="http://2.bp.blogspot.com/-jnRMrFJVEDY/Uv2uHvTFUDI/AAAAAAAAFTk/EVMX7j9uyj8/s1600/Jack's+Program1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-jnRMrFJVEDY/Uv2uHvTFUDI/AAAAAAAAFTk/EVMX7j9uyj8/s1600/Jack's+Program1.jpg" height="308" width="400" /></a></div>
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<a href="http://3.bp.blogspot.com/-UFyhmYpkgQ4/Uv2uKpogwMI/AAAAAAAAFT8/amAMB_Uzl_Y/s1600/Jack%2527s+Program2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-UFyhmYpkgQ4/Uv2uKpogwMI/AAAAAAAAFT8/amAMB_Uzl_Y/s1600/Jack%2527s+Program2.jpg" height="308" width="400" /></a></div>
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Prayer Card</div>
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<a href="http://3.bp.blogspot.com/-doc51dJvc6Y/Uv2uKl1hotI/AAAAAAAAFUA/xZxUOAQ9t6A/s1600/jack1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-doc51dJvc6Y/Uv2uKl1hotI/AAAAAAAAFUA/xZxUOAQ9t6A/s1600/jack1.jpg" height="400" width="280" /></a></div>
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<a href="http://1.bp.blogspot.com/-kUDm8CfyUfA/Uv2uKrp1tWI/AAAAAAAAFT4/hgpmzGdj17E/s1600/jack2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-kUDm8CfyUfA/Uv2uKrp1tWI/AAAAAAAAFT4/hgpmzGdj17E/s1600/jack2.jpg" height="400" width="280" /></a></div>
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<!--EndFragment-->Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com3tag:blogger.com,1999:blog-29916680.post-28104622992101092312014-02-10T21:21:00.002-07:002014-02-18T19:15:00.605-07:00Hang In There With MeI 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.<br />
<br />
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.<br />
<br />
Much love.Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com3tag:blogger.com,1999:blog-29916680.post-78073517583437573192014-01-26T14:43:00.000-07:002014-01-27T21:38:10.888-07:00How Am I DoingSo many good people have been checking up on me this last week asking how I'm doing. <br />
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<br /></div>
<div>
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. </div>
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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.</div>
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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?<br />
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Yes, I know .... one minute, one hour, one day at a time.</div>
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<div>
The title of this blog is <i>"Jack's Journey and Then Some"</i>. 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. </div>
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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. </div>
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Onward, dammit. Onward.<br />
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~~~~~~~~~~~~~~~~~~~~~~~~</div>
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Jack's empty room - it's heartbreaking</div>
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<a href="http://1.bp.blogspot.com/-WmFNZe-fRdM/UuWAbbEqAMI/AAAAAAAAFS8/GZug6IMnEX8/s1600/Jacksroom.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-WmFNZe-fRdM/UuWAbbEqAMI/AAAAAAAAFS8/GZug6IMnEX8/s1600/Jacksroom.JPG" height="300" width="400" /></a></div>
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all his "props"</div>
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<a href="http://4.bp.blogspot.com/-ka3ZrjVSUEM/UuWAc_xFRjI/AAAAAAAAFTE/-1zGiPYuEvM/s1600/room2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-ka3ZrjVSUEM/UuWAc_xFRjI/AAAAAAAAFTE/-1zGiPYuEvM/s1600/room2.JPG" height="300" width="400" /></a></div>
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Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com7tag:blogger.com,1999:blog-29916680.post-87161164424808206182014-01-23T19:27:00.001-07:002020-04-21T07:12:15.303-07:00More ReflectionsBelow are the reflections shared by the other speakers at Jack's Celebration of Life.<br />
<br />
<br />
<i>BRIDGET (Jack's cousin)</i><br />
<i><br /></i>
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.<br />
<br />
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. <span style="mso-tab-count: 1;"> </span>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 <i style="mso-bidi-font-style: normal;">would</i> agree with <i style="mso-bidi-font-style: normal;">your</i> opinion, but then we would <u>both</u> 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.<br />
<br />
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.<br />
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<span class="Apple-style-span" style="font-family: inherit;">
</span>
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<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-tab-count: 1;"> </span>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 <i style="mso-bidi-font-style: normal;">our</i> 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<a href="https://www.blogger.com/blogger.g?blogID=29916680" name="_GoBack"></a>. </span></span></div>
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</span><br />
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<span class="Apple-style-span" style="line-height: 32px;"><span class="Apple-style-span" style="line-height: normal;">______________________________</span></span></div>
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<span class="Apple-style-span" style="line-height: 32px;"><span class="Apple-style-span" style="line-height: normal;"><br /></span></span></div>
<!--EndFragment--><br />
<i>ANGIE (one of Jack's home health nurses and my friend from the Trach Board)</i><br />
<span class="Apple-style-span" style="font-family: inherit;"><br /></span>
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<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
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<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span><br />
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
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<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span></div>
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<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;">
</span>Quote “<b style="mso-bidi-font-weight: normal;">Oh No! You’ve found the
evil dragon!”<o:p></o:p></b></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">Kristi was more adventurous than I and
would take Jack on long outings to McDonalds where he loved to watch the kids
play.<span style="mso-spacerun: yes;"> </span>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. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="color: black;"><span class="Apple-style-span" style="font-family: inherit;">______________________________</span></span></div>
<div class="MsoNormal" style="text-align: center;">
<br />
<br /></div>
<div class="MsoNormal">
<div class="MsoNormal">
<span style="line-height: 115%;"><o:p><span class="Apple-style-span" style="font-family: inherit;"><i>BARRY (physician)</i></span></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><o:p><span class="Apple-style-span" style="font-family: inherit;"><i><br /></i></span></o:p></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><o:p><span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="font-family: inherit;">
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</span></span></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="font-family: inherit;">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. </span></span></div>
<span class="Apple-style-span" style="font-family: inherit;">
</span><br />
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<span class="Apple-style-span" style="font-family: inherit;">
</span>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="font-family: inherit;">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. </span></span></div>
<span class="Apple-style-span" style="font-family: inherit;">
<div class="MsoNormal">
<br /></div>
</span><span style="line-height: 115%;"><o:p><span class="Apple-style-span" style="font-family: inherit;"><div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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?! </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Though unfortunately I have seen many children die, I don’t
go to many funerals. Just those of family, unfortunate colleagues or close
friends.<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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! </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I wanted to share this line from the 2005 movie “The
Interpreter” – with Sean Penn and Nicole Kidman. Hey, I’m in LA now<span style="mso-spacerun: yes;"> </span>- you gotta’ mention the movies
wherever you go. Briefly, the dictator of a fictitious<a href="https://www.blogger.com/blogger.g?blogID=29916680" name="_GoBack"></a>
African country is being forced to read from a book he wrote when he was the
young liberator of the country: </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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 <span style="mso-spacerun: yes;"> </span>trainees over the years. So
Jack and Ann have taught physicians – and nurses - they have never even met. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Zihkrono livaracha – may his memory be a blessing. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment--></span></o:p></span><br />
<!--EndFragment--></div>
<!--EndFragment-->Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com2tag:blogger.com,1999:blog-29916680.post-9355671677951752142014-01-21T19:50:00.000-07:002014-07-19T16:03:20.280-07:00Mary's, Dad's and Mom's Reflections <!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
Below are what Mary, Mark and I shared about Jack at his Celebration of Life.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
____________________________</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><b><i>MARY'S REFLECTIONS</i></b></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Dear Jack,<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Enjoy those angel
wings, little brother, you deserve them. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">There is so much I
could say, but I’m going to keep it short and sweet.<o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I want to finish
with a quote from “Wonder” by RJ Palacio. It says:<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"> </span>“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.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">I can tell you
Jack, that everyone here has the best memories of you. Your monument will be in
all our hearts forever.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">You are my
sunshine sweet boy. I love you to the moon and back. <o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;">Until we meet
again.</span><span class="Apple-style-span" style="font-family: 'Comic Sans MS';"><o:p></o:p></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span class="Apple-style-span" style="font-family: inherit;">____________________________</span></div>
<div class="MsoNormal" style="text-align: center;">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span class="Apple-style-span" style="font-family: inherit;"><b><br /></b></span></div>
<div class="MsoNormal" style="text-align: left;">
<span class="Apple-style-span" style="font-family: inherit;"><b><i>DAD'S (MARK'S) REFLECTIONS</i></b></span></div>
<div class="MsoNormal" style="text-align: left;">
<span class="Apple-style-span" style="font-family: inherit;"><b><br /></b></span></div>
<div class="MsoNormal" style="text-align: left;">
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</div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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. </span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">In first John, chapter four, verse 12 it says:<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">No one has ever seen God; but if we
love one another, God lives in us and His love is made complete in us.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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 <i style="mso-bidi-font-style: normal;">can</i> do hard things.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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
<i style="mso-bidi-font-style: normal;">our</i> lives. More importantly, who knew
Jack <i style="mso-bidi-font-style: normal;">himself</i> 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. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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.</span></span></div>
<span class="Apple-style-span" style="font-family: inherit;"><span style="font-size: 11pt; line-height: 115%;"><br clear="ALL" style="page-break-before: always;" />
</span>
</span><br />
<div class="MsoNormal">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>Galatians chapter 5,
verse 22 says:<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">The fruit of the Spirit is love, joy,
peace, forbearance, kindness, goodness, faithfulness, gentleness, and
self-control. Against such things there is no law.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: inherit;">Thank
you, God, for sending us such a perfect gift in Jack.</span><b><o:p></o:p></b></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0.0001pt;">
<span class="Apple-style-span" style="font-family: inherit;"><br /></span></div>
<!--EndFragment--><br />
<div class="MsoNormal" style="text-align: center;">
<b><span class="Apple-style-span" style="font-weight: normal;">____________________________</span></b></div>
<div class="MsoNormal" style="text-align: center;">
<b><span class="Apple-style-span" style="font-weight: normal;"><br /></span></b></div>
<div class="MsoNormal" style="text-align: left;">
<b><i>MOM'S (ANN'S) REFLECTIONS</i></b></div>
<div class="MsoNormal" style="text-align: left;">
<b><br /></b></div>
<div class="MsoNormal" style="text-align: left;">
<span class="Apple-style-span" style="font-family: inherit;">
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</span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span style="line-height: 115%;">The first thing that comes to my mind as I stand here in front of all of
you is, </span><span style="line-height: 115%;"><i>Why did I agree to do this?</i></span><span style="line-height: 115%;"> <span style="mso-spacerun: yes;"> </span>I’m a
writer. I don’t stand up in front of large groups of people and talk.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span class="Apple-style-span" style="font-family: inherit;"><span style="line-height: 115%;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">This is totally a Jack thing.<span style="mso-spacerun: yes;">
</span>From day one – Jack has pushed me out of my comfort zone.<span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">I would like to first take some time to thank
the people who have helped me along this journey.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>However, let there be no doubt, there wasn’t anything I did
for Jack, that I did alone.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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. <span style="mso-spacerun: yes;"> </span>I couldn’t have chosen a better partner to have traveled
Jack’s journey with.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;">
</span>We did it with the camaraderie and love we so willingly share with each
other.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">Pam Ruzi – the first social worker I ever
agreed to talk with. She also came along at just the right time. <o:p></o:p></span></span><br />
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">My family, friends and so many others too
numerous to name, who have been there to support me along the way. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">It took a village to care for Jack and it
took a village to carry his mother through these last 15 years.<o:p></o:p></span></span><br />
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">So, to MY village, I say Thank You!</span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">Now to my sweet Jack.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>Jack truly
defined what is important in life – simplicity, contentment, patience,
perseverance and love.<span style="mso-spacerun: yes;"> </span>Jack
challenged me on so many levels, he kept me grounded and he has given my life
such purpose and direction.<span style="mso-spacerun: yes;"> </span>A
little boy who spoke no words, spoke volumes by the way he lived each day.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"><br /></span></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">To acquire wisdom, one must be an observer.
Jack was the supreme observer. The wisdom behind his silence was piercing.<span style="mso-spacerun: yes;"> </span>There was a spirit about Jack that
couldn’t be explained, but could be profoundly felt in our quiet moments
together.<span style="mso-spacerun: yes;"> </span>I will always cherish those
quiet moments, especially those we shared during the last few difficult months
of Jack’s life. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<span style="mso-spacerun: yes;"> </span>Jack faced the
hardships of this life with unprecedented joy and grace and he challenged me to
do the same.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">The loss of Jack is immeasurable.<span style="mso-spacerun: yes;"> </span>But, the pain of Jack’s absence is more
bearable than the pain of seeing him suffer.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>And even more than that, that he is now
experiencing the indescribable joy of heaven – which he has so rightfully
earned.</span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><a href="https://www.blogger.com/blogger.g?blogID=29916680" name="_GoBack"></a><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">So, where do I go from here?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">ONWARD. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">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.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;"><br /></span></span></div>
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<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: inherit;">And I hope all of you will do the same – in
honor of Jack’s memory.</span><span class="Apple-style-span" style="font-family: Arial; font-size: 16pt; font-weight: bold;"><o:p></o:p></span></span></div>
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<!--EndFragment-->Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com4tag:blogger.com,1999:blog-29916680.post-9534818235821555782014-01-19T12:06:00.000-07:002014-02-10T21:03:11.727-07:00Video - Jack's Journey <div class="separator" style="clear: both; text-align: center;">
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Video shown at Jack's Celebration of Life </div>
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Jack's Journey</div>
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<br />Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com5tag:blogger.com,1999:blog-29916680.post-36129843226255167342014-01-12T01:57:00.001-07:002017-09-06T07:55:30.981-07:00Jack's Last DayI 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.<br />
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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.<br />
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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. <br />
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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. <br />
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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. <br />
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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.<br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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.<br />
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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 <i>ONLY </i>thing that gives me the strength to go on.<br />
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So it must be ...<br />
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Onward my friends, onward. <br />
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<br />Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com15tag:blogger.com,1999:blog-29916680.post-88559901947019306302014-01-09T21:26:00.002-07:002014-01-09T21:26:43.570-07:00Another Beautiful Tribute to My Sweet JackWritten by a comrade in arms. Thank you for the gift of your beautiful words Eric.<br />
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<span class="Apple-style-span" style="font-size: large;"><b><a href="http://iamabrokenmanyoucantbreakme.blogspot.com/2014/01/jack.html">JACK</a></b></span></div>
Annhttp://www.blogger.com/profile/10834197308019791700noreply@blogger.com0