Thank you for sharing this beautiful post. Everything shifted for me when my daughter Aix was diagnosed with bipolar disorder her freshman year of college and when she died at age twenty-five. I’ve had to learn to shift my expectations and to live in the moment. Your stories resonated with me.
Yes! We often start a chronic grief journey when we are landed with a chronic illness diagnosis for a child. So many adjustments need to happen and then if our child dies, that chronic grief humming along in the background, flares to life again.💙💛💙
Oh Julie, thank you for sharing. I can only imagine. What a shift… multiple shifts. I’m so glad you are here. Thank you for reading and sharing your shift and your story. 🩵
Thank you for writing this for me. Thank you for helping me know I am not alone.
I have a 6 week old set of grand twins. They were 7 weeks premature so both spent time in the NICU. I am so thankful for those wonderful nurses who cared for them both in the B pod. Skye was healthy, but little. Eli was born with duodenal atresia and had surgery to repair his digestive track when he was a week old. It was repaired well, but 2 weeks later, he got a blood infection. He is still being cared for in the NICU. And the little fellow has an extra chromosome too, like your daughter did. Several times a week, I now go to the NICU to hold Eli and learn from him. And to be honest, his room is a good place to just be present. I can only imagine all the parents, grandparents, nurses and doctors who have prayed in the room and been present in that space.
I also have a mom-in-law with moderately severe dementia. She forgets to eat. Her memories are pieced together in funky ways. She gets confused about the whys and hows of her everyday living. Calendars are great, until you forget what day it is. Yet she smiles when she sees us. She thrives on being with us. And it is hard to see how people are now passing her by and not coming round to chat. She was a caregiver to her grands. It’s hard to see how much she needs care now.
Living in the present is hard. I’m not good at it. And yet, the blessings are in the present. And I live close to these and others I love. ❤️🩹❤️🩹❤️🩹
Linda, it has taken me a lifetime to learn to live in the present and still, I have to work at something that was embedded in Sheila's DNA.
Thank you for taking time to read this joint essay. Take the nuggets you can from this. Keep in mind you can always ask me questions that pop up regarding your grandson.💙💛💙
Alex, I’ve been witness to the opposite type elderly couple experience. When my friend Julie was in the hospital weeks before she died she had a dementia state induced by both a severe UTI and what the nurses called ICU psychosis. I stayed with her in the moment. We laughed about the “ancestors” standing in the corner of the room. But her family kept correcting her. Trying to pull her into their reality. She got this angry face and got really frustrated with them.
Later, when the antibiotics had started to work and she came out of the “episodes” she and I mused about the spirits she introduced me to. We giggled about it for days.
She taught me how to be in the moment and how to bend my realities for the sake of connection.
Nancy, as an educator, I took a year sabbatical to go live with my cousin who was going through divorce as his son was diagnosed with autism. I was primary caregiver to this nonverbal 5yo boy who taught me so much about being present. We went on long walks where he taught me about enjoying the texture of raised letters on statue plaques. He taught me about giggling as the wind hit my face and how laughter can bend the wind. All the while, his father pushed therapy after therapy to teach him how to speak (it never happened). I learned his language, and it remains the most beautiful form of communication I ever experienced. It was because of him that I could enter that magickal space with my friend Julie in the ICU 20 years later
Thank you both for expressing so eloquently a part of my heart. 💜
Terri, I have long held that it is better to meet the person where they are and see what unfolds. This has helped me as a school nurse in a special ed preschool that serves many children with autism.
Rather than using in one specific type of therapy, our director has given us a “bag of many tools” to us. But they all start with meeting the child where they are.
This is what you did with your friend, Julie and with your cousin’s son.
It is what I did when I put down the camera and danced with my daughter on the beach. Giggles are so precious!
Thank you for reading and sharing two wonderful examples of meeting the person where they are at. 💙💛💙
Susie, unconditional love 100% of the time was not something I had experienced growing up. Sure, my dad was able to demonstrate it frequently, but there were times... not so much.
I remember when my first daughter was placed in my arms, I vowed to do better than my parents with showing unconditional love.
Then Sheila was born. She radiated it all the time. She led the way in demonstrating unconditional love to her sisters, her dad and to me. We would sometimes say, "Be like Sheila." Thank you for reading and commenting. 💙💛💙
Nancy, what a courageous and sincere collaborative essay with Alex. I think I've invited you to write a guest piece for my Substack, but if not, it's an open invitation. Everything about this was so gorgeous--your love for Sheila, the way you memorialize her through photos and very specific memories of her personality, where you were, what you were doing, and then sharing so openly about her death and her lasting impact on you and on the world.
Alex, what you shared about your TBI was so humble. I hear you about being the "expert" and then having your world crash down when you realize you are at the behest of the very people who used to be your colleagues or peers. I loved this line especially, which I believe carries the essence and spirit of what you and Nancy wrote together: "The people we think need our guidance are often the ones teaching us how to be alive."
A resounding YES.
I learned this, of course, when our daughter Sarah was born. Until that day, I thought all the parenting books I'd read and classes I'd taken were sufficient to equip me as a mom. I had to throw out everything I'd ever thought I knew about not just parenting but LIFE when Sarah was born. It was a HUGE act of humility for me--moving from a place of teacher to student.
Sarah, and all of my kids, are my teachers. I am still learning from them every day.
Jeannie, you I don’t remember an invite, but now I have one—thank you, we’ll chat… Working with Alex on this piece was lovely. I loved the way he intermingled our similar deep message with our own lived experiences. Alive (Sarah) or dead (Sheila), our daughters have so much to teach the world and I appreciate every interaction you and I have had since I first arrive here on Substack.💙💛💙
Alex, this piece touched me to my core. So so much to chew on here. This below brought tears. Thank you for giving me an opportunity to feel the feels this morning
“they’ve learned to inhabit reality without the crushing weight of pretending it’s something else.”
Thank you both for sharing the importance of being in the present moments of our lives. It's something I work at a lot, but definitely need to remind myself!
Erin, thank you! 💙💛💙
Thank you for sharing this beautiful post. Everything shifted for me when my daughter Aix was diagnosed with bipolar disorder her freshman year of college and when she died at age twenty-five. I’ve had to learn to shift my expectations and to live in the moment. Your stories resonated with me.
Julie, thank you for sharing your experience with the shifting sands of parenthood.
Learning to adjust to new expectations is a journey in itself. I'm sorry for your loss. 💙💛💙
Thank you for your support! It was a journey to adjust to new expectations and losses even before my daughter died.
Yes! We often start a chronic grief journey when we are landed with a chronic illness diagnosis for a child. So many adjustments need to happen and then if our child dies, that chronic grief humming along in the background, flares to life again.💙💛💙
Absolutely! Double-duty grieving!
Oh Julie, thank you for sharing. I can only imagine. What a shift… multiple shifts. I’m so glad you are here. Thank you for reading and sharing your shift and your story. 🩵
“Live in the moment”
advice words go quite well with
“Love in the moment.”
...
To meet each other
in each moment, truly here.
Easier said than done.
...
Sheila knew presence.
Alex learned from unnamed pair.
Who guides, teaches who?
Live in the moment and love in the moment do pair very well, don't they! Thank you for reading and sharing your thoughts.💙💛💙
Thank you for writing this for me. Thank you for helping me know I am not alone.
I have a 6 week old set of grand twins. They were 7 weeks premature so both spent time in the NICU. I am so thankful for those wonderful nurses who cared for them both in the B pod. Skye was healthy, but little. Eli was born with duodenal atresia and had surgery to repair his digestive track when he was a week old. It was repaired well, but 2 weeks later, he got a blood infection. He is still being cared for in the NICU. And the little fellow has an extra chromosome too, like your daughter did. Several times a week, I now go to the NICU to hold Eli and learn from him. And to be honest, his room is a good place to just be present. I can only imagine all the parents, grandparents, nurses and doctors who have prayed in the room and been present in that space.
I also have a mom-in-law with moderately severe dementia. She forgets to eat. Her memories are pieced together in funky ways. She gets confused about the whys and hows of her everyday living. Calendars are great, until you forget what day it is. Yet she smiles when she sees us. She thrives on being with us. And it is hard to see how people are now passing her by and not coming round to chat. She was a caregiver to her grands. It’s hard to see how much she needs care now.
Living in the present is hard. I’m not good at it. And yet, the blessings are in the present. And I live close to these and others I love. ❤️🩹❤️🩹❤️🩹
Linda, it has taken me a lifetime to learn to live in the present and still, I have to work at something that was embedded in Sheila's DNA.
Thank you for taking time to read this joint essay. Take the nuggets you can from this. Keep in mind you can always ask me questions that pop up regarding your grandson.💙💛💙
Thank you! If you have any good resources to offer, please send me a message. I’m just beginning to learn about this whole new world.
Alex, I’ve been witness to the opposite type elderly couple experience. When my friend Julie was in the hospital weeks before she died she had a dementia state induced by both a severe UTI and what the nurses called ICU psychosis. I stayed with her in the moment. We laughed about the “ancestors” standing in the corner of the room. But her family kept correcting her. Trying to pull her into their reality. She got this angry face and got really frustrated with them.
Later, when the antibiotics had started to work and she came out of the “episodes” she and I mused about the spirits she introduced me to. We giggled about it for days.
She taught me how to be in the moment and how to bend my realities for the sake of connection.
Nancy, as an educator, I took a year sabbatical to go live with my cousin who was going through divorce as his son was diagnosed with autism. I was primary caregiver to this nonverbal 5yo boy who taught me so much about being present. We went on long walks where he taught me about enjoying the texture of raised letters on statue plaques. He taught me about giggling as the wind hit my face and how laughter can bend the wind. All the while, his father pushed therapy after therapy to teach him how to speak (it never happened). I learned his language, and it remains the most beautiful form of communication I ever experienced. It was because of him that I could enter that magickal space with my friend Julie in the ICU 20 years later
Thank you both for expressing so eloquently a part of my heart. 💜
Terri, I have long held that it is better to meet the person where they are and see what unfolds. This has helped me as a school nurse in a special ed preschool that serves many children with autism.
Rather than using in one specific type of therapy, our director has given us a “bag of many tools” to us. But they all start with meeting the child where they are.
This is what you did with your friend, Julie and with your cousin’s son.
It is what I did when I put down the camera and danced with my daughter on the beach. Giggles are so precious!
Thank you for reading and sharing two wonderful examples of meeting the person where they are at. 💙💛💙
oh the adventures people have taken me when I let them lead! I wouldn’t have it any other way now!
Absolutely!
Two beautiful stories. The demonstration of love, the hardest and most courageous task in the world.
Susie, unconditional love 100% of the time was not something I had experienced growing up. Sure, my dad was able to demonstrate it frequently, but there were times... not so much.
I remember when my first daughter was placed in my arms, I vowed to do better than my parents with showing unconditional love.
Then Sheila was born. She radiated it all the time. She led the way in demonstrating unconditional love to her sisters, her dad and to me. We would sometimes say, "Be like Sheila." Thank you for reading and commenting. 💙💛💙
Thank you, Susie, for being here and reading. The demonstration of love is indeed the hardest and most courageous task in the world. 🩵
Nancy, what a courageous and sincere collaborative essay with Alex. I think I've invited you to write a guest piece for my Substack, but if not, it's an open invitation. Everything about this was so gorgeous--your love for Sheila, the way you memorialize her through photos and very specific memories of her personality, where you were, what you were doing, and then sharing so openly about her death and her lasting impact on you and on the world.
Alex, what you shared about your TBI was so humble. I hear you about being the "expert" and then having your world crash down when you realize you are at the behest of the very people who used to be your colleagues or peers. I loved this line especially, which I believe carries the essence and spirit of what you and Nancy wrote together: "The people we think need our guidance are often the ones teaching us how to be alive."
A resounding YES.
I learned this, of course, when our daughter Sarah was born. Until that day, I thought all the parenting books I'd read and classes I'd taken were sufficient to equip me as a mom. I had to throw out everything I'd ever thought I knew about not just parenting but LIFE when Sarah was born. It was a HUGE act of humility for me--moving from a place of teacher to student.
Sarah, and all of my kids, are my teachers. I am still learning from them every day.
Thank you both for this beautiful piece.
Jeannie, you I don’t remember an invite, but now I have one—thank you, we’ll chat… Working with Alex on this piece was lovely. I loved the way he intermingled our similar deep message with our own lived experiences. Alive (Sarah) or dead (Sheila), our daughters have so much to teach the world and I appreciate every interaction you and I have had since I first arrive here on Substack.💙💛💙
I agree, Nancy, and I feel the same way about you. Just message me when you'd like and I'll send you the submissions page for my guest pieces. ❤️❤️❤️
Alex, this piece touched me to my core. So so much to chew on here. This below brought tears. Thank you for giving me an opportunity to feel the feels this morning
“they’ve learned to inhabit reality without the crushing weight of pretending it’s something else.”
Two of my favorites in one place! This is beautiful. 🧡
Thank you for sharing this insightful lovely post.
Thank you for sharing in this journey
Thank you both for sharing the importance of being in the present moments of our lives. It's something I work at a lot, but definitely need to remind myself!
Nancy A, years of practice helps, but I still have to remind myself at times. For Sheila it was her norm, no different from breathing.💙💛💙
Thank you for sharing this powerful back-and-forth with us, Alex and Nancy.
And Alex: your introduction to it, talking about your background. If you ever give a TEDtalk, that's how I hope you start it.
Thank you. It was wonderful collaborating with Alex on this essay. He's a gem of a person.