Lyle, I bookmarked this one last week and meant to come back and say (here I am saying it!) how powerful and beautifully written this one is! Love the non-linear vignette format. ✨
Lyle, I feel fortunate when I get to read your writing, I spend too much time in the past and future, but you help bring me back to the present. You write with generosity and so well with words like: "We’re in a very public place, but we feel all alone in our own world."
Thank you for sharing these moments with us. Your descriptions of your very personal experiences that none of us can truly grasp awoke memories of different kinds of medical issues from my own life. Those awful awful moments when life becomes a surreal mess. A nightmare. And the feeling of wanting to laugh because it’s taken on a new level of absurdity. You describe your experience so clearly that I can see your daughter and everything around her. Beautiful piece.
god damn man this was beautiful. em sounds like such an amazing lil girl. she's so fucking lucky to have you and Allison watching over her. thank you for sharing this stuff with the world. I am simultaneously reminded not to take shit for granted and also to appreciate the infinite ways in which love makes pain which makes more love. love u dude.
Thank you for sharing these experiences. It is so important because it's not a common experience but it is one that is good for people to understand especially if they or their loved ones find themselves in similar situation.
Two of my dearest friends had a baby with NEMO and one night my friend was texting about how Elliot's feeding tube (it was a tube in his nose - think it was for feeding) came out and what a traumatic experience it was to get it back in. I replied with something optimistic and like "well he won't remember it when he's older" type of response. . . her reply indicated that my words weren't helpful ha.
A couple weeks later I was visiting them one day when Elliot's tube came out again - his dad was in a meeting so his mom said to me "you have to hold him down while I get this back in." Elliot was on his back, with both of us in a heavy hover over him, the screams and cries taht erupted from him were gut wrenching and all I could do was keep a firm but loving pressure on him so he would be as steady as possible while she reinserted the tube. . . a few minutes later he was smiles and tears and laughter and warm in my grasp, but holy cow I finally understood the trauma his mom was referring to annd I couldn't believe it was "just something they had to do."
Em had the feeding in her nose for the first four months of her life, as well. It’s called an ng-tube. She pulled it out so many times. I’m not sure if she was trying to or got lucky and grabbed it. I can vividly remember how awful it was to get it back in.
When we left the hospital, we thought it would be a temporary thing and she would eventually eat by mouth. But the vomiting and dwindling amount of volume of milk she was getting from a bottle made it clear that we needed a more permanent solution.
Did your friends ever opt for the g-tube surgery or was Elliot eventually able to go without the ng-tube?
NG-tube, yes, that's what it was called - thank you! Elliot had a bone marrow transplant last April but. . . sadly he passed away at the age of 18 months just last May. It has been pretty devastating, as you can imagine even more so as a parent - which I am not. I wish I had come across your writings while Elliot was alive as it has helped me understand even more clearly what my friends were going through. I was lucky as I was one of their only friends who ever met Elliot because his immune system was so compromised that they kept his bubble to family, doctors, and me. Your stories of Em remind me of the joy Elliot brought to my life even with all the delays and tubes etc - he could just be pure joy. Thank you for your reply, and again for your candid sharing - it makes a difference.
Lyle, I bookmarked this one last week and meant to come back and say (here I am saying it!) how powerful and beautifully written this one is! Love the non-linear vignette format. ✨
Thank you so much, Alicia!
Lyle, I feel fortunate when I get to read your writing, I spend too much time in the past and future, but you help bring me back to the present. You write with generosity and so well with words like: "We’re in a very public place, but we feel all alone in our own world."
Thank you, Edward! That means a lot from such a prolific writer as you are.
Very well written Lyle. I remember that day! So many challenges for you, Allison and Em. Love Mom
Thanks, Mom. Love you too ❤️
Thank you for sharing these moments with us. Your descriptions of your very personal experiences that none of us can truly grasp awoke memories of different kinds of medical issues from my own life. Those awful awful moments when life becomes a surreal mess. A nightmare. And the feeling of wanting to laugh because it’s taken on a new level of absurdity. You describe your experience so clearly that I can see your daughter and everything around her. Beautiful piece.
Thank you, Minna!
Big smile at the end :) Happy Holidays McKeany family.
Thanks, Chandler! Happy Holidays to you and yours, as well.
god damn man this was beautiful. em sounds like such an amazing lil girl. she's so fucking lucky to have you and Allison watching over her. thank you for sharing this stuff with the world. I am simultaneously reminded not to take shit for granted and also to appreciate the infinite ways in which love makes pain which makes more love. love u dude.
Thanks, Alex! Your comment hit hard (in a good way) since your writing about your family has given me similar feelings. ❤️
aw thank you dude
Powerful. Thanks for sharing Lyle.
Thank you!
Thank you for sharing these experiences. It is so important because it's not a common experience but it is one that is good for people to understand especially if they or their loved ones find themselves in similar situation.
Two of my dearest friends had a baby with NEMO and one night my friend was texting about how Elliot's feeding tube (it was a tube in his nose - think it was for feeding) came out and what a traumatic experience it was to get it back in. I replied with something optimistic and like "well he won't remember it when he's older" type of response. . . her reply indicated that my words weren't helpful ha.
A couple weeks later I was visiting them one day when Elliot's tube came out again - his dad was in a meeting so his mom said to me "you have to hold him down while I get this back in." Elliot was on his back, with both of us in a heavy hover over him, the screams and cries taht erupted from him were gut wrenching and all I could do was keep a firm but loving pressure on him so he would be as steady as possible while she reinserted the tube. . . a few minutes later he was smiles and tears and laughter and warm in my grasp, but holy cow I finally understood the trauma his mom was referring to annd I couldn't believe it was "just something they had to do."
Power to you and Allison!
Thank you, Trilety!
Em had the feeding in her nose for the first four months of her life, as well. It’s called an ng-tube. She pulled it out so many times. I’m not sure if she was trying to or got lucky and grabbed it. I can vividly remember how awful it was to get it back in.
When we left the hospital, we thought it would be a temporary thing and she would eventually eat by mouth. But the vomiting and dwindling amount of volume of milk she was getting from a bottle made it clear that we needed a more permanent solution.
Did your friends ever opt for the g-tube surgery or was Elliot eventually able to go without the ng-tube?
NG-tube, yes, that's what it was called - thank you! Elliot had a bone marrow transplant last April but. . . sadly he passed away at the age of 18 months just last May. It has been pretty devastating, as you can imagine even more so as a parent - which I am not. I wish I had come across your writings while Elliot was alive as it has helped me understand even more clearly what my friends were going through. I was lucky as I was one of their only friends who ever met Elliot because his immune system was so compromised that they kept his bubble to family, doctors, and me. Your stories of Em remind me of the joy Elliot brought to my life even with all the delays and tubes etc - he could just be pure joy. Thank you for your reply, and again for your candid sharing - it makes a difference.
Oh wow, I’m sorry for you and your friends’ loss. As tough as our experience with Em has been at times, it’s hard to imagine life without her.