Wednesday, October 20, 2021

Shared Struggles: Blyth Lord, Ann Schrooten, Dr. Barry Markovitz

Give a listen to this informative podcast with Blyth Lord, Executive Director of Courageous Parents Network, me and Dr. Barry Markovitz about our book, Shared Struggles


Podcast HERE




Wednesday, April 28, 2021

Jack's Legacy

After almost six years, the book that was once just an idea has now become a reality. Shared Struggles: Stories From Parents and Pediatricians Caring For Children With Serious Illnesses is available for purchase on Amazon and the Publisher's (Springer) websites. 

Here are the words I shared on Facebook - I think they best describe my emotions at this time: 

"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 cut myself some slack and 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, always thank God and Jack for. Onward my friends and thank you!"

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Order on Amazon or on Springer's website 



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Beautiful Foreword by Christopher Adrian MD

FOREWORD

          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. 

        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. 

        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. 

        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. 

        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. 

________________

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. 



Sunday, November 02, 2014

For Everything There is A Season


For everything there is a season,
and a time for every purpose under heaven.
A time to be born, and a time to die. 



Wednesday, September 10, 2014

So I Write Again

Here is where you will find me

Thursday, June 26, 2014

Permission, Thank You and Signing Off

We 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?

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.

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.

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.

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.

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.

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.

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.

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 ONWARD.

ONWARD, my beautiful and amazing friends, ONWARD.

Friday, June 06, 2014

Heaven



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.

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.

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 heaven sent 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.

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.

In the meantime, this pretty much sums it up ...


Homesick by MercyMe






Thursday, May 29, 2014

Jack's Journey - The Early Years Part III


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 damn consent, he just smiled.

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 fellows 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, “You haven’t made one wrong decision regarding Jack.” 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. 

day of trach surgery


The day of Jack’s trach surgery was also the day of Mary’s kindergarten graduation. Jack was out of surgery about an hour before I had to leave to get to Mary’s school. 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 when I fell short in the “being present for Mary” department.

 my beautiful kindergarten graduate



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.

Because Jack was coming home on a vent, someone had to manage him and his vent after he left the hospital. At St. Louis Children’s, a pulmonologist typically follows kids on vents.  I was asked who I wanted to follow Jack.  Over the course of the many months that Jack was in the PICU, I had encountered all of the pulmonology attendings and there wasn’t one that I particularly cared for and there were a few I flat out didn’t like.  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.  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. 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.

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.

hospital PT

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.  

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.

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.

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.  

 discharge day

one of Jack's primary nurses came in on her day off to say good-bye

sporting the hat given to him by Dr. Garcia - the PICU fellow who 
was going to follow Jack on the vent at home

Jack and Dr. Garcia


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.

the car ride home


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. 

Jack hooked up to his "portable" ventilator and pulse-ox. 
Can you say "overwhelming"?

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 was smart, funny and a bit manic and 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.

Jack and his nurse Holly

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:

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!

 our first summer home with Jack pics





Jack made it through the entire summer before we found ourselves back in the PICU. This time for reasons other than respiratory.  

Stay tuned.

____________________________________________



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. 

Sunday, May 18, 2014

My Truth

It'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.

_____________________________



As I held Jack in my arms during his final hours, all I could say to him over and over again was "I'm Sorry".

Since that day, I've thought a lot about what I'm sorry for.

I'm sorry he was born with such an unforgiving disease.

I'm sorry he was hurting and he couldn't tell me where it hurt or how it felt.

I'm sorry I couldn't stop the pain.

I'm sorry I couldn't make him better.

I'm sorry I couldn't find doctors who could make him better.

I'm sorry for all the things he tried to tell me and I didn't understand.

I'm sorry for those times I wasn't as patient and gentle with him as I could have been.

I'm sorry I went to work and didn't stay home with him those last months of his life.

I'm sorry I didn't spend every night sleeping with him during his final months.

I'm sorry I didn't crawl into bed with him at Ryan House and hold him every second of his final days.

I was sorry I left his side at all during his final days.

I'm sorry I didn't talk to him more his last day.

I'm sorry I didn't touch him more his last day.

I'm sorry I didn't know it was going to be his last day.

But, despite all the things I'm sorry for,

I can say with certainty what I'm not sorry for.

I'm not sorry that January 5th was his last day

Because,

I'm not sorry that he is no longer hurting.

I'm not sorry that he is in his heavenly home and experiencing the joy of eternal life.

I'm not sorry he is finally free.

I miss him. I ache for him. I cry for him. Every single day.

But, I'm not sorry he is finally free.

ONWARD.

Wednesday, May 07, 2014

Ryan House Speech

The words of my speech for the 2014 Ryan House Community Breakfast:

____________________________

Good morning. It’s an honor to share with you our family’s Ryan House story.

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. 

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.

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.

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.

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.

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!

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.

Last year, Jack’s health began to decline and, in September, we transitioned him to hospice care.

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. 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.

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.

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. 

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:

“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.”

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.

Families like mine NEED Ryan House.

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.

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. 

Sunday, May 04, 2014

Inching Onward

He's been gone four months.  Why does it feel like it's been an eternity? I've been told more than once that grief is a process. A process is defined as "a systematic series of actions directed to some end." 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.

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, Frozen, but Mark and I can't bring ourselves to buy it because Jack is not here to watch it with us. 

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. 

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!)  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. 

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.

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.

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.

I miss him. I ache for him. I cry for him. But, as difficult as it is, I'm ...

Inching Onward.



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





As you may recall, my friend Eric wrote a poem about Jack 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 here. You won't be disappointed. 

Sunday, April 27, 2014

Ryan House Community Breakfast


To all of my local (Phoenix area) friends: Please consider coming to the Ryan House Community Breakfast 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! 

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.  

beautiful Sedona




Hiking through Oak Creek Canyon - West Fork Trail


End of the trail - we built a Cairn for Jack




I also left two stones in the creek (the other side of the "Onward" stone says "Love Jack")









 Chapel of the Holy Cross


inside the Chapel




xoxo

Sunday, April 13, 2014

Unburdened

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.

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 d'var Torah (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.

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. 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 is 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.

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 Peg, 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".

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.



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 Onward than to leave all the burdens and painful memories with the willow tree. Ever Bending, Never Breaking. A sign from Jack? I'd like to believe so.

where I buried the stone

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.

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.

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 "UNBURDENED". 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.  

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.



_________________________________________







hiking along the bluffs overlooking the Meramec


St. Louis Children's 




chapel



Central Institute for the Deaf - old entrance

new entrance

hike with Jenny

Thursday, April 03, 2014

Jack’s Journey – The Early Years Part II


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

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

JACK’S JOURNEY – THE EARLY YEARS, PART II

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

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

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

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

post-op vascular ring division



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

I was so wrong.

finally off the ventilator post-op


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








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




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



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

resting post-op diaphragm plication


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

But, I digress.

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

on high dose steroids and miserable



last failed attempt at extubation before trach


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

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