Ten Years

Ten years. Ten years since I’ve looked into his beautiful eyes, touched his soft skin, tousled his silky blonde hair and have seen his sweet smile. Ten years since I’ve suctioned his trach, changed his diaper, done stoma care and emailed his supply order to Apria. Some of these things I miss desperately and some I do not miss at all. Ten years feels like forever ago and like yesterday. 

After Jack died, people would say to me, “he’s still here, he’s in your heart.” And I would silently yell into the void, “He’s not here! I don’t feel him in my heart! I don’t feel him anywhere!” Those first few years, the pain of his absence was deep and relentless and grief was incapacitating. Today, the tears still fall, my heart still aches and I live with regrets and guilt. However, the relentless pain has dissipated and grief has become my constant companion. Most of all, ten years later, I can finally feel Jack. I feel the warmth and presence of his spirit surrounding and guiding me. 

The most profound connection I’ve had with Jack since he died was on his 25th birthday at a live storytelling event in New York City last November that was put on by The Nocturnists and Bellevue Literary Review. I was among five people chosen to share their story about "Taking Care." When I was working with the coaches on my story, I expressed that I didn’t want my story to come across as a sad story. One of the coaches told me that she didn’t see my story as a sad story, she sees it as a love story. That she understood this without knowing Jack or me really touched me. In working on my story, I had to dig deep in the archives of my memory of life with Jack. I spent a lot of time reading through my blog posts and reflecting on the memories and emotions I shared through my written words. Composing an oral story challenged me to think and share my words in a very different way than when I write. My one-on-one coach was patient and kind and it was a valuable learning experience for me as a storyteller. 

The night of the event, I was hoping that I would be one of the first to tell their story so I could get it over with, but no such luck. I was number four of five. Waiting in the “green room” until it was my turn was excruciating. When my turn came, I walked onto the stage and looked out to a pitch black room. The only thing I could see was a bright light that shone on the stage from the back of the room. Despite it being a small venue, the faces of the audience weren't visible, which was probably a good thing. The story I told takes place in Jack’s room, on a difficult night near the end of his life. As I spoke into the microphone, looking into the blackness, I felt physically transported to Jack’s room. Every word came alive – the scene was real, the emotions were real and Jack was literally in the room with me. I saw him and felt him in a way that words can never adequately describe. For nine and a half minutes, it was just me and Jack in that room. 

I couldn’t see the audience’s reaction to my story, but I’m told there were tears. Mark shared these words with me a few days after the event: “the audience was instantly transported to a place few people can imagine and they will be better off because of it.” I’ll take his word for it because I don’t think I will ever be able to watch the video of the event once it becomes available. I will forever be grateful for this opportunity, not because I got to be on stage speaking to a live audience (an introvert and perfectionist’s worst nightmare!), but because I got to be back in the room with Jack. I got to lay in bed beside him, hold his soft hand and listen to music with him. It was surreal. It was pure, unconditional love. It was a gift.

(onstage at the Leonard Nimoy Thalia Theater in New York City 11/4/2023)

Jack is a force and he continues to pave the path forward for me. Every time I think that I’ve shared Jack’s story enough and maybe it’s time for me to hang up my hat and move on from being “Jack’s mom,” opportunities show themselves and things seem to fall into place. There are too many instances to mention, but what I will say is that I don’t believe in coincidences, I believe in the power of Jack and God - a team that has kept me on my toes and taken me places I never dreamed possible over the last ten years. I don’t know when the ride ends, but I will continue to take Jack’s lead, listen and say "yes" when the opportunities present themselves. And when the time comes that the opportunities cease or I feel that our story has reached its end, I will be okay with that. Jack taught me that I get to choose whether I live the life I was given as a tragedy or as an opportunity. Begrudgingly at first, and now with open arms, I choose to live life as an extraordinary opportunity. 

Thank you Jack. I love you, I miss you, I’ll see you again my beautiful boy. 

ONWARD

 

9 Years ... His Memory Is A Blessing

"Dedicated to Jack. May His Memory Always Be A Blessing"

(Shared Struggles)

After Jack died, I heard the words "May his memory be a blessing" from several of my friends, all of whom are Jewish. These words felt profound and meaningful, and they touched me when I heard them in reference to Jack. Barry shared these words with me several times over the years of working on the book together. When it came time to write the dedication to the book, there was no question as to who the book would be dedicated to. But along with Jack's name, I knew I wanted to also include those words that touched me so deeply the first time I heard them in reference to Jack. I didn't know if it would be appropriate for me to include the words because I'm not Jewish, so I reached out to a good friend who is Jewish to ask her what she thought. She assured me that it was absolutely okay and said,"it fits Jack perfectly." 

The literal Hebrew translation is "may his (or her) memory be for a blessing." The words don't simply mean may we look back fondly on our memories of that person or our time with them as a blessing, but rather we look towards the future and are expressing a desire that the person's memory and the actions they performed while they were alive will inspire us and others to continue on their legacy of committing good deeds; that there will be future good deeds and future merit on the basis of the foundation of good deeds in that person's life.  

There are many who encountered Jack during his life who will never understand or "get" how he taught, inspired and carried out good deeds without ever speaking a word or performing a single act. But those of us who truly knew Jack can attest that he did. And he continues to do so through the lessons he taught me, many of which became words in a book, and thereafter words spoken to more than a thousand listeners over this last year. Jack's presence in this world was as Teacher, and his legacy as Teacher continues through the words in a book he inspired and the dialogue and actions that are inspired because of those words.

While I am certain some may feel I exaggerate the impact Jack had on the world, I can rest in the certainty of the impact he had on me. Nine years after his death, Jack's memory is, without question, "for a blessing." 

I love him. I miss him. I'll see him again. 

"Not a second of any minute of any hour of any day passes when I am not aware of the presence of your absence, no matter how many years lurk over my shoulder."

ONWARD

Where To?

I haven't blogged in a very  long time. I only write when I feel moved to write. Tonight I feel moved to write ... so, I write.

As you can imagine, the last year has been all about "the book." Shared Struggles was published one year ago on April 28, 2021. I recently received our first annual sales report and royalty check.* We sold  over 900 copies of the book in the eight months the book was out in 2021. That doesn't seem like a lot of copies to me, but I'm reminded that when you consider our publisher is a medical publisher, not a mainstream publisher, it is a respectable number of sales. And honestly, from my and Barry's perspective, it is not about the number of sales, it is about getting the messages of our stories out to the medical professionals who need to hear them and to the parents who they resonate with. And we have been getting the messages out. 

Last year we were given the opportunity to talk about our book on a podcast with Blyth Lord of Courageous Parents Network, and I spoke about our book on a podcast with The Unforgotten Families. So far in 2022, we've given virtual Grand Rounds at UMass Memorial Children's Medical Center and an in-person presentation at a PALISI (Pediatric Acute Lung Injury and Sepsis Investigators network) meeting. To date, we have three more Grand Rounds invitations - Children's Hospital Los Angeles, Phoenix Children's Hospital and Department of Pediatrics at Weill Cornell. I've met with the Chair of the Department of Bioethics and Medical Humanism at the University of Arizona School of Medicine - Phoenix and I've sent the book to the Director of Curriculum at USC Keck School of Medicine, both of whom agreed to review the book for possible inclusion in their medical school curriculum. Some of these opportunities are because of the connections Barry has, and some are from my relentless efforts to get the word out. I told Barry that I would commit to one year of promoting Shared Struggles. We have surpassed the one year mark. What now? Aside from the Grand Rounds we have scheduled and the pending review of the book by University of Arizona SOM and USC Keck SOM, it has been relatively quiet the last month. When it is quiet, I wonder whether that is my cue that it is time to "move on" from the book. But what does moving onward look like for me? I was the parent of a medically complex child for over 15 years. After that, I stayed in the "trenches" with fellow parents and physicians over the course of the six years it took to gather stories and write the book. I've been a part of the community of parents of medically complex children for over 23 years and so many of my dearest friends are still living "the life" I once lived. I believe so deeply in the importance of Shared Struggles and its potential to make a real difference in the delivery of pediatric health care. But I'm also growing weary of asking, promoting, and, what feels like, "bothering" when it comes to this book. 

Since Jack died, I've placed my patience and my faith in the phrase "Here I am Lord, Send Me." And it has worked well to guide me and keep me on the path that I believe was intended for me after Jack's death. I'm over eight years in and the book is published. I'm not sure how much longer or harder I'm supposed to push the book or remain in the world of medically complex children. Yet, it's really all I know. Can I ever really move on from being "Jack's mom"? From being the parent of a medically complex child? From being the editor of a book that needs to be read by the people who care for our children? I don't have the answers to these questions. I just know that I'm unsettled not knowing whether to continue to hang in there with this book or move onward and be okay with just being, with no agenda or goals. 

I'm in unchartered waters as someone who is goal oriented and has always had something on my plate that needs to get done. Having the book to work on after Jack died gave me a reason to get out of bed; it motivated me to keep on keeping on. Letting go of having the book on my "to do" list feels like letting go of Jack. It's not easy to walk away from. I honestly don't know how to just "be." But maybe it's time. Maybe it's not time. 

While I try to figure it all out, I will do my best to rest in the quiet and put my faith in the words that have sustained me since January 5, 2014 ... 

"Here I am Lord, Send Me"

Thank you to all of you who have been there with me and continue to be with me as I walk the grief-filled walk as the parent of a child who has died. You, too, sustain me. xoxo 

*all proceeds from the sales of Shared Struggles are being donated to non-profit organizations that support families of medically complex children. 

Shared Struggles - Stories From Parents and Pediatricians Caring For Children With Serious Illnesses

SHARED STRUGGLES is now available on Amazon  and the publisher's website.  

Below is the Foreword for the book written by Christopher Adrian, MD. 

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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. 

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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. 

Twenty-Two Years

My sweet Jack (you will always be my sweet Jack), today is your 22nd birthday. Twenty-two years ago you opened my eyes to a whole new world and introduced me to the first of many firsts I would get to experience because of your difficult, yet precious life. You were my first premature baby, first c-section, first time in a NICU, first experience with neonatologists and NICU nurses, and the list goes on and on. 

I think of you all the time, especially when I look up at the sky. Not that I believe you are "up there" somewhere, it's just that the sky has a vastness and unknowing about it that reflects the wonder and unknowing of where the soul resides. Looking into the sky allows me to imagine. I look up and I imagine you. And I cry. And I hope. And I smile.

I talk to you all the time, although I have no idea if anyone "hears" in the great beyond. I miss you deeply, in a way that only a mother could miss her child. And the farther out we get from January 5, 2014, the more I feel pulled toward you. People move on, they have their own lives and stresses and losses, and that's only natural. But I miss talking about you. I miss hearing your name. I'm afraid people are forgetting you, so I hold on that much tighter to you and your memory. 

When you were here with us, your birthdays were always so bittersweet. I was grateful for another year with you and all the good you brought to our lives. You truly were such an instrument of peace and grace and love. But there was always a bit of sadness when I would think about how a healthy Jack would be celebrating his birthday. Today, when I imagine celebrating your birthday, I only imagine life with YOU, the Jack that God gifted to us. Although, if I'm honest, with your brother in college now, I do have those moments of wondering what it would be like if you and Eric were in college together. I think your brother would have really enjoyed having a big brother to do things with. I suppose we all wish for things we never get. I wonder what you wished for when you were here?

While today is your birthday here on earth, I don't imagine you celebrating your birthday wherever you are now. Because time doesn't exist in infinity. Birthdays are earthly celebrations of remembrance. My faith tells me that your true "birthday" was January 5, 2014. Your first day of forever. My biggest wish for today and every day since you died is that one day I will get to see you again - whatever that "seeing" looks like. I survive on that hope.

So today we remember and celebrate your earthly birthday and the fifteen years we had with you. Your life was a gift. I love you, I miss you, I'll "see" you again my sweet Jack. 

Grief and Hope

I've been thinking a lot about how grief and hope are intertwined. Especially as I’ve been reading the words written by moms who are deep in the trenches of long-term caregiving for their children with medical/special needs and by moms who are living with the recent deaths of their children. I was and am those moms.

After Jack died, I read every book and article I could find on surviving the death of a child. The prevailing themes centered on the journey through grief, healing after loss, and how to grow from the experience and find joy and purpose in life again. All of which are valuable resources, but the more I read about grief after death, the more I realized that these books and articles didn’t tell me anything I didn’t already know. The fact is, grief wasn't new to me. I had fifteen years of loss and grief experience under my belt leading up to January 5, 2014.

I grieved from the moment Jack was born seven weeks early. I grieved the loss of a healthy baby as Jack spent the majority of the first seven months of his life in intensive care, intubated, undergoing multiple surgeries, failed attempts at weaning from the ventilator, his body invaded with chest tubes, arterial lines, NG tubes, and IVs. I grieved the loss of the family and life I expected (and wanted!) when I brought my seven-month old son home from the hospital with a trach, attached to a ventilator and a feeding tube inserted into his stomach. I grieved the loss of privacy when I had to invite nurses into my home to help care for Jack. I grieved the loss of my dreams of a star athlete with the diagnosis of congenital muscular dystrophy, with the addition of PT, OT, and special education services, when his first wheelchair was ordered. I grieved the start and end of every school year knowing that Jack would never attend school with his siblings, graduate high school or college. I grieved the loss of conversations with my son as I accepted that he would never speak the words his mind so clearly held. I grieved for all Jack had to endure with every surgery, procedure and hospital admission. I grieved from frustration and helplessness with every conflict with medical professionals, DME companies, insurance companies, and nursing agencies. I carried the burden of anticipatory grief after I signed the hospice admission form. I've had to pick myself up and carry on in the face of grief time and time and time again. Before Jack died, I knew grief. I was a freaking grief expert.

Yet despite the undercurrent of grief, life was filled with so much love and joy and purpose. The foundation of this love and joy and purpose was HOPE. Because Jack lived, there was always hope. Because Jack lived, there always existed the possibility that tomorrow could be a better day. Jack deserved for tomorrow to be a better day. He gave me the strength and intention to go to bed each night with hope and the resolve to do everything I could to make tomorrow a better day. 

But after Jack died, grief was different. I not only grieved the loss of Jack, I grieved the loss of hope.

Over the last five years, I’ve had to rediscover hope in a life without Jack. These last five years have taken me on a spiritual journey like I’ve never experienced before (and continue to experience). To quote one of my favorite teachers, Fr. Richard Rohr, “Grief is a privileged portal into soul work and transformation.”

I’ve always believed in God. But I was raised to believe in a God to be feared; a God who required me to earn my way to heaven. Today, the God I know, the God who gives me hope, the God who has my son, is a loving God, not a God to be feared. My God doesn’t demand that I earn the right to see my son again. 

It's taken a lot of reading, a lot of praying, a lot of reflecting, and a lot of trusting to get where I am today. But today, in the midst of my grief, I again have HOPE. I survive and thrive and love and find joy and purpose in life because I know with every fiber of my being that Jack’s spirit lives on, that he is okay, and that with the setting of each day here on earth, I am one day closer to being with him again. Absolutely and unconditionally. 

Grief is still a part of my life. And so, too, is Hope. 

Onward. 

Dear Jack

Dear Jack,

How is it possible that five years have passed since I held you in my arms as your heart sounded its final beat? How is it possible that my heart has continued to beat the last 1,825 days? Time feels so different since you died. Yes, years come and go and can be counted, but time feels oddly stationary. As if it’s incomprehensible that life could continue on without you. When I think back to something that happened in the past and want to assign “years since,” I have to remind myself to add the number of years since January 5, 2014 to my starting point. That first year after you died, I was hyper-focused on the passage of time. Each day, week, and month wasn’t solely a measure of how long you’d been gone, but a measure of another day, week, and month that I survived without you. And survived, I have.

Someone recently shared information with me about an online support group for parents of children with special needs who have died. While I appreciated that she reached out to me, my response was, “I’m doing okay.” Admitting that I’m doing okay since you died carries an element of risk. I risk that people will interpret my healing to mean that I’m no longer grieving, that I have “moved on,” that they don’t need to ask how I’m doing, or say your name. I will always grieve your absence, Jack. I miss you so much I ache. I will always appreciate when people ask me how I’m doing and I love hearing your name. I will forever wear the blanket of grief. Some days it weighs heavier than others. 

But my sweet boy, I am doing okay. I’m doing okay because I know without a doubt that you are okay. Your last heartbeat on earth was immediately followed by your first soulbeat in heaven. Your spirit soared and lives on. I know this. On those days when I need to hear from you, I simply ask and you answer. I hear you in the clouds, on the trail, in every perfectly timed text message, email, and card I receive. Rumi reminds us that “There is a voice that doesn’t use words. Listen.” That is as much true now as it was during your lifetime. You taught me to listen to the voice in your eyes. I use what you taught me to listen for you now. 

Over the last five years, I’ve slowly converted your room into my space. The room that was always filled with people, commotion, joy, and enormous love has become a quiet, peaceful place. Love still permeates the air. When I sit on the couch where your bed once was, I envision the room through your eyes. I smile. I cry. I feel your presence. While much of your room has changed, some things remain untouched. The last videos you watched still sit on top of the DVD player. The monitor sits on the floor, still plugged in. 

           

I’ve given away or tossed most of your equipment and supplies. But there are some things that remain. Your wheelchair sits parked in your shower along with your Ryan House bin that still holds everything we left Ryan House with when we left without you. Your bedside dresser holds fifteen years worth of your glasses. I feel no compulsion to get rid of these things. They are sacred to me. The pants you were wearing when you died are carefully folded in your dresser drawer, still holding the faintest scent of you. On those days when I ache to hold you, I pull the pants out of the drawer, hold them close to my face and draw in your scent. And I sob.

One of the greatest gifts you left me with is my circle of friends. They are why I can keep on keeping on. The people who supported us throughout your life are still here, supporting me. My sorority sisters, your nurses, your doctors, and so many others who cared for us during your lifetime. Even though I'm no longer in the trenches caring for you, I haven't been abandoned. It's so hard to be on the outside looking in. But our people continue to embrace me. Who would have guessed that I'd hike the Grand Canyon with two of your nurses and other moms I met because they have kids like you. Who would have guessed that I'd find myself in your neurologist's kitchen eating breakfast, that she made me! Or that I'd be writing a book with another one of your doctors. Even in your absence, you continue to widen my circle of friends as I meet and walk with other parents whose children have died. You touched people Jack and because of your incredible reach, I am surviving.

As I try to wrap up this note of meandering thoughts, I recognize that I’m really writing this to myself. I need to hear these words, you do not. Perhaps that’s the hardest part about this journey -  knowing that you no longer need me. You live on without your mom. That’s a hard one. Equally as hard is that I must live on without you. A few months ago, I read these words and they really spoke to me: “Nobody can will their heart to beat even once. Every heartbeat is a gift from God and means he’s not done with you yet.”

Five years ago, my beautiful son, you finished your work here on earth and your heart stopped beating. You have been released to your heavenly Home. My heart still beats. I have more work to do. You changed me, Jack. Who I am and all I do is because you lived. My work is really “our” work. You light my way. Sustained by your indomitable spirit, guided by your light, and with an eye always towards the day I get to be with you again, I will continue to grieve, I will continue to say your name, I will continue to do our work, and I will continue to push Onward. 

And I will be okay. 

I love you. I miss you. I am thankful for the fifteen years I had you. 

xoxo 
Mom