Shared Struggles Documentary Panel Discussion - Courageous Parents Network

This last week, Courageous Parents Network  hosted a virtual screening of the Shared Struggles Documentary. After the screening, there was panel discussion facilitated by Blyth Lord that included three parents and three physicians. The discussion was so powerful and so insightful. It is so worth the watch for parents living the life, physicians who care for our medically complex children and for anyone who just wants to understand more about this growing population of children and those who care for them. 

You can watch it here: Shared Struggles Documentary Panel Discussion

Shared Stuggles Documentary

 Link to website and information on Documentary:

Shared Struggles Documentary

Currently looking for a distributor. Any leads or suggestions, please email me at: schrooten.ann@gmail.com

Shared Struggles Documentary - Updates

 Hello Friends! 

I'll be updating the progress and release of the "Shared Struggles" documentary on this blog. As of now, Our amazing filmmaker, Adam has finished the rough cut (putting together the interviews) and the next step is adding video footage of families, editing and sound. Here is a link to the trailer from Adam's website: Trailer  Check back here on occasion for updates. 

Thank you to all who have supported this project, whether it be financially and/or with your enthusiasm and encouraging words. As with the book, this is not my project, this is OUR project. 

Also, I think there might be a way to set notifications so you will receive an email when I post on here. I'm not sure how, but I have friends who have notifications set, so hopefully there are instructions somewhere on how to do that.

You can also always contact me at: schrooten.ann@gmail.com

xoxo

Onward! 

Fly Away

On November 4, 2023 (Jack's 25th Birthday), I participated in a live storytelling event in New York City hosted by The Nocturnists and Bellevue Literary Review centered on the topic of "Taking Care." I was one of five storytellers chosen to share their story. Each of us had our own unique take on what "taking care" looked like for us. My story, titled "Fly Away", is very much centered on the hands-on care that Jack required, as well as what it was like to be Jack's mom, our special connection and the emotions of letting go towards the end of Jack's life. To share the words of Blyth Lord with Courageous Parents Network after listening to my story: "It isn't rosy. It isn't dark. It is just clear and true." 

I hope wherever he is in the vast unknown, Jack knows that I love him, I miss him and I'm so grateful I got to be his mom. 

Video from the live storytelling event:

This summer I was also invited to do a podcast with Emily Silverman with The Nocturnists where we discussed my story and life with Jack and life after Jack's death.

Link to podcast with Emily Silverman with The Nocturnists: FLY AWAY PODCAST

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.