Dear Suleika, You have no idea how much I needed to see “Darling, I am Here For You” when I woke up at 4:30am after fitful sleep, full of worry and fear about how I will help and comfort my 8-year-old darling daughter, who will be having a bone marrow transplant in March. Thank you.
Your prompt reminds me of the times you, Melissa, Max and others were there for each other. Sometimes Paul or I might be in the wings nearby, or driving you all through NYC, listening and admiring the courage, fun and closeness shared.
I’m also reminded of how when Melissa wanted her last days to be at home in NH how her friends S and J quietly gathered a few suitcases full of some of Melissa’s favorite things from her apartment in Brooklyn and somehow, I don’t even remember, set up all her “treasures” in her room in New Hampshire.
Though we are not near, you are close in our hearts. Love to you!!
My wife suffered from a rare auto immune disease for 14-1/2 years, including 6+ years in a care center. During those years, I went to visit her nearly every day. Some days we did "stuff" and some days, we just sat there and enjoyed each other's presence.
She passed about 17 months ago, but I would do it all over again....every. single. day. That's what "in sickness and health" and other parts of the marriage vows mean.
Hospital elevator. Her brother and sister are with me and my colleague, Anne-Marie. We received the call not long ago and brought the two children down to the play space. I have brought the three of them to this play space many times before and we are doing our best to provide comfort and distraction to her siblings now.
In the elevator, Anne-Marie and I are escorting them back upstairs to rejoin their parents and family. Sister is hyperactive, animated. Brother is very, very quiet. Sister turns, asking with an electric smile, "Is she awake now?" Anne-Marie and I exchange steely eye contact. We are trained to tell the truth using developmentally-appropriate language. We are trained to kneel down to eye level and say, "I'm very sorry. Your sister died today." Instead, Anne-Marie says in a small, honest voice, "...no." Sister goes back to singing and distracting herself. It seems to me, in retrospect, that both children understood, on some level, what was happening. The truth I buried deep down was my own grief and magical thinking; a wish to "protect" the children from this truth - a truth that happened too often in peds - even for one moment longer. "Your sister died today." I served as a member of the pediatric psychosocial team for four years. Providing grief support never, ever became easier. Another secret: my heart would break along with theirs, always and still.
I felt an acute awareness that, in the future, this would be a day that they would replay in their memories over and over again for the rest of their lives. It is a strange and terrible thing, to be present, realizing loss is unfolding in real-time, but being powerless to change the outcome. We provided legacy-building interventions, carefully-selected grief books, hugs, comfort, photos, videos, and everything we were trained to do, but nothing we did could change what happened and the grief these children would endure.
I remember thinking: "This may be one of the worst days - if not the worst day - of your life and I am so, so sorry. I wish I could change that, I wish I could take your pain away, but I can't. There's nothing I can do to change what happened today. But what I can do is be here. To be here for you and with you. To do my best to make you feel seen, heard, and loved. And to remind you that you are not alone."
I know I made mistakes in my job. I know I didn't always say the right thing - and sometimes there was no right thing to say. But I always did my best to rush in with comfort and presence. I never shyed away from being there for and with families while they grieved. My heart broke over and over with my patients and their families. I laughed and I cried with them. I laugh and I cry, still, carrying their memories with me in my heart. I feel graced by their presence in my life, and my only hope is that, if and when they remember me, that my memory provides even an ounce of comfort. That was always my intention.
Thank you for sharing this silent mantra. I will continue to carry it with me too: "Darling, I am here for you."
A week and a half ago I started meeting with a small circle of friends, meeting on Zoom for now, once a week for one hour. I started calling them the arcs because “hey ladies” just sounded creepy in a Demetri Martin kind of way! I wondered if I was using the word arc correctly, so I looked it up and discovered that it is not only (as I thought) a section of the circumference of a circle, but it is also a welding term used to describe the sparks and brightest light that happens upon the touching of the heat, the metals, and the surfaces being joined in metalwork. One of the members of the group wrote back to my sharing this discovery and said we are now “sparks and arcs!” So happy to be an arc and a spark on an outer circle of the ripples of your writing SuSu!
On 2/2/22 I celebrated my 11 yr transplant birthday from AML and my 13th from
Allo from Hodgkins Disease. I got so many posts :: almost 300 on Facebook and another 80 on Instagram. Heartwarming, encouraging, and they all mentioned how I had been such an inspiration for them. Its difficult to see how that might be so when you're deep into the challenge- yet I remain very grateful.
I have followed your journey since the beginning and I send only the brightest light and prayers your way. I learned how prayers really do work. Ill never stop
Thinking about what you wrote in your book, before your first transplant, your worries. You have changed the world. You have changed me. You have held and uplifted us all through these seemingly endless pandemic days. Now we hold you in our hearts, and uplift you and yours with all our might. Sending you all the love in my heart, and deep gratitude. ❤️
You are in my heart. As part of my circle of community that lifts my spirit and allows me to provide care is a gorgeous Monstera that sissy in my front bay window. My daughter gave me this plant 2 years ago for my birthday, just after I finished BTK and couldn’t stop talking about it. Thus, we named the Monstera “Suleika.” I say some words of blessing and gratitude to this plant everyday and she is thriving. May you too feel this force of love from all who are sending it your way and may it be a source of healing for you and your brother. My next gorgeous plant will be named for him. ❤️
Adam - Thank you for your humor and grace while donating! I was a recipient and I am grateful to everyone that donates their stems cells. It's beautiful act of generosity. Sending you all love.
To Suleika, this comes from someone you have never met, yet we are connected via this vibrant community. Thank you for all you have given us. Now we give back to you…love, good wishes, heartfelt encouragement…all the good things you so richly deserve.
The concentric circles overlapping our life experiences are little orbs drawing us together with common experiences. It was reading your book, your first book, that I was drawn to you and the many facets of dealing with life, death and everything in between that you described so vividly, explicitly and candidly. In parallel, at least in my world, was my 21 year old granddaughter who was going through the whole process of having a stem cell transplant. First facing that all the chemo and radiation had failed, even though she rang her bell thinking cancer was behind her. Her testing in a few months revealed otherwise. So you know how that feels. You know all about this as you described again and again in your book.
The irony of reading about Will and knowing exactly how that felt in this family when my granddaughter’s boyfriend decided he needed to move on. It was your penned words, the shared experiences, the pain and passion of situations you described and endured that drew me into the circle. Descriptive words about difficulties understood by families touched by the grief visitor.
You’re about to embark on the next stage of the journey and looking at a third birthday coming up soon. You know they say, “the third time’s a charm”.
This community is sacred 💜. My belief in God is simple: Love is God and God is Love. My faith lets me know that Love says, "Darling, I am here for you." I just need to be open to receive It. Healing prayers for you dear Sister and Brother.
Dear Suleika- In addition to the wonderful suggestions of tangible things to bring to the hospital, I hope you are bringing with you the embodiment of all the love and warmth and healing energy everyone is sending for you. -Ann Brewster
Dear both! Prayers to you this special time of isolation and in the landscape you enter. Thank’s for updates and reminders of the gift of friendship. May the bone marrow from your brother also have the same sense of humor hiden within it! (Without him loosing his….) a miracule! ❤️😉🚌 Blessings through days and nights../Britta
Sitting with a palliative care specialist to review options for our 93 year-old father was tough. Nothing could reverse damage from smoking, age, and viral assaults. My sister was the health proxy; my role was to listen. So I did. And I watched love in action with her decision to provide comfort over medical intervention.
Dear Suleika, You have no idea how much I needed to see “Darling, I am Here For You” when I woke up at 4:30am after fitful sleep, full of worry and fear about how I will help and comfort my 8-year-old darling daughter, who will be having a bone marrow transplant in March. Thank you.
Dear Suleika,
Your prompt reminds me of the times you, Melissa, Max and others were there for each other. Sometimes Paul or I might be in the wings nearby, or driving you all through NYC, listening and admiring the courage, fun and closeness shared.
I’m also reminded of how when Melissa wanted her last days to be at home in NH how her friends S and J quietly gathered a few suitcases full of some of Melissa’s favorite things from her apartment in Brooklyn and somehow, I don’t even remember, set up all her “treasures” in her room in New Hampshire.
Though we are not near, you are close in our hearts. Love to you!!
Cecelia
My wife suffered from a rare auto immune disease for 14-1/2 years, including 6+ years in a care center. During those years, I went to visit her nearly every day. Some days we did "stuff" and some days, we just sat there and enjoyed each other's presence.
She passed about 17 months ago, but I would do it all over again....every. single. day. That's what "in sickness and health" and other parts of the marriage vows mean.
Prompt 181..."Darling, I am here for you."
_______
Hospital elevator. Her brother and sister are with me and my colleague, Anne-Marie. We received the call not long ago and brought the two children down to the play space. I have brought the three of them to this play space many times before and we are doing our best to provide comfort and distraction to her siblings now.
In the elevator, Anne-Marie and I are escorting them back upstairs to rejoin their parents and family. Sister is hyperactive, animated. Brother is very, very quiet. Sister turns, asking with an electric smile, "Is she awake now?" Anne-Marie and I exchange steely eye contact. We are trained to tell the truth using developmentally-appropriate language. We are trained to kneel down to eye level and say, "I'm very sorry. Your sister died today." Instead, Anne-Marie says in a small, honest voice, "...no." Sister goes back to singing and distracting herself. It seems to me, in retrospect, that both children understood, on some level, what was happening. The truth I buried deep down was my own grief and magical thinking; a wish to "protect" the children from this truth - a truth that happened too often in peds - even for one moment longer. "Your sister died today." I served as a member of the pediatric psychosocial team for four years. Providing grief support never, ever became easier. Another secret: my heart would break along with theirs, always and still.
I felt an acute awareness that, in the future, this would be a day that they would replay in their memories over and over again for the rest of their lives. It is a strange and terrible thing, to be present, realizing loss is unfolding in real-time, but being powerless to change the outcome. We provided legacy-building interventions, carefully-selected grief books, hugs, comfort, photos, videos, and everything we were trained to do, but nothing we did could change what happened and the grief these children would endure.
I remember thinking: "This may be one of the worst days - if not the worst day - of your life and I am so, so sorry. I wish I could change that, I wish I could take your pain away, but I can't. There's nothing I can do to change what happened today. But what I can do is be here. To be here for you and with you. To do my best to make you feel seen, heard, and loved. And to remind you that you are not alone."
I know I made mistakes in my job. I know I didn't always say the right thing - and sometimes there was no right thing to say. But I always did my best to rush in with comfort and presence. I never shyed away from being there for and with families while they grieved. My heart broke over and over with my patients and their families. I laughed and I cried with them. I laugh and I cry, still, carrying their memories with me in my heart. I feel graced by their presence in my life, and my only hope is that, if and when they remember me, that my memory provides even an ounce of comfort. That was always my intention.
Thank you for sharing this silent mantra. I will continue to carry it with me too: "Darling, I am here for you."
A week and a half ago I started meeting with a small circle of friends, meeting on Zoom for now, once a week for one hour. I started calling them the arcs because “hey ladies” just sounded creepy in a Demetri Martin kind of way! I wondered if I was using the word arc correctly, so I looked it up and discovered that it is not only (as I thought) a section of the circumference of a circle, but it is also a welding term used to describe the sparks and brightest light that happens upon the touching of the heat, the metals, and the surfaces being joined in metalwork. One of the members of the group wrote back to my sharing this discovery and said we are now “sparks and arcs!” So happy to be an arc and a spark on an outer circle of the ripples of your writing SuSu!
On 2/2/22 I celebrated my 11 yr transplant birthday from AML and my 13th from
Allo from Hodgkins Disease. I got so many posts :: almost 300 on Facebook and another 80 on Instagram. Heartwarming, encouraging, and they all mentioned how I had been such an inspiration for them. Its difficult to see how that might be so when you're deep into the challenge- yet I remain very grateful.
I have followed your journey since the beginning and I send only the brightest light and prayers your way. I learned how prayers really do work. Ill never stop
xoxojulie*
Thinking about what you wrote in your book, before your first transplant, your worries. You have changed the world. You have changed me. You have held and uplifted us all through these seemingly endless pandemic days. Now we hold you in our hearts, and uplift you and yours with all our might. Sending you all the love in my heart, and deep gratitude. ❤️
You are in my heart. As part of my circle of community that lifts my spirit and allows me to provide care is a gorgeous Monstera that sissy in my front bay window. My daughter gave me this plant 2 years ago for my birthday, just after I finished BTK and couldn’t stop talking about it. Thus, we named the Monstera “Suleika.” I say some words of blessing and gratitude to this plant everyday and she is thriving. May you too feel this force of love from all who are sending it your way and may it be a source of healing for you and your brother. My next gorgeous plant will be named for him. ❤️
Adam - Thank you for your humor and grace while donating! I was a recipient and I am grateful to everyone that donates their stems cells. It's beautiful act of generosity. Sending you all love.
To Suleika, this comes from someone you have never met, yet we are connected via this vibrant community. Thank you for all you have given us. Now we give back to you…love, good wishes, heartfelt encouragement…all the good things you so richly deserve.
The concentric circles overlapping our life experiences are little orbs drawing us together with common experiences. It was reading your book, your first book, that I was drawn to you and the many facets of dealing with life, death and everything in between that you described so vividly, explicitly and candidly. In parallel, at least in my world, was my 21 year old granddaughter who was going through the whole process of having a stem cell transplant. First facing that all the chemo and radiation had failed, even though she rang her bell thinking cancer was behind her. Her testing in a few months revealed otherwise. So you know how that feels. You know all about this as you described again and again in your book.
The irony of reading about Will and knowing exactly how that felt in this family when my granddaughter’s boyfriend decided he needed to move on. It was your penned words, the shared experiences, the pain and passion of situations you described and endured that drew me into the circle. Descriptive words about difficulties understood by families touched by the grief visitor.
You’re about to embark on the next stage of the journey and looking at a third birthday coming up soon. You know they say, “the third time’s a charm”.
Here’s to the third birthday date!🍺🎆🎈
Kathryn Merrithew
Bangor, Me
This community is sacred 💜. My belief in God is simple: Love is God and God is Love. My faith lets me know that Love says, "Darling, I am here for you." I just need to be open to receive It. Healing prayers for you dear Sister and Brother.
Dear Suleika- In addition to the wonderful suggestions of tangible things to bring to the hospital, I hope you are bringing with you the embodiment of all the love and warmth and healing energy everyone is sending for you. -Ann Brewster
Dear both! Prayers to you this special time of isolation and in the landscape you enter. Thank’s for updates and reminders of the gift of friendship. May the bone marrow from your brother also have the same sense of humor hiden within it! (Without him loosing his….) a miracule! ❤️😉🚌 Blessings through days and nights../Britta
Sitting with a palliative care specialist to review options for our 93 year-old father was tough. Nothing could reverse damage from smoking, age, and viral assaults. My sister was the health proxy; my role was to listen. So I did. And I watched love in action with her decision to provide comfort over medical intervention.
Thank you so much Suleika and Sue Levin for the book title spreadsheet! Generating and sending waves of healing and revitalization!