Thank you Tina for your sharing and stories of little Kiki. Looking forward to all your writing. I am recuperating from breast cancer, and consider myself fortunate after reading your family's story. from Terri Cerrigone
Hi Theresa, it's good to hear from you. Somehow I missed seeing your comment last month and I'm just reading it now. I am so sorry to hear you have been dealing with breast cancer. I had it too, a few years ago. It's a tough road and I'm glad to know you are recuperating now. It takes a long time to recover.
How happy I was to see your post this snowy morning. I was and still am confused about reading your postings which I subscribed to.....did I do it correctly? Love hearing your stories from "on the road." I am trying to write, as you will agree it helps our mental health. Went back to memoir group. One of our writers, Nettie Jonah (I think you may have helped her with her book. She was in her high nineties and has passed.
I am still heartbroken for you and Kiki's dad. I'm not sure how you cope. Just as an aside, I know you will be interested, my grandson, age 22, is going to join the Peace Corps when he graduates from Brown in a few months. I am heartbroken that I will not see him for 2 years. I'm foolish about this, but I can't help being sad (and happy).
I wanted to order a few more of my books. Gave many away. Not sure if you can or wish to do this for me. If you would rather not, I'll just order from Amazon. I was hoping you made a few dollars when you ordered. Sending all my love and best today. Fondly, Terri
Beautiful blonde Kiki looks into camera with eyes wise to the beauty and wonder of this world. Thank you for writing so powerfully and honestly. Your skill is evident in each carefully chosen word.
I'm so sorry for your loss, and thank you for this thoughtful look into the anxiety that comes along with allergies. "When the deadly enemy is one of the most common substances in daily life, when the enemy is food, there is no way to not be always on alert" really resonated with me as someone with allergies myself.
Hi Zoe, good to hear from you. I thought your post on food allergy anxiety was really good. Anxiety is an aspect of food allergies that could use more attention. Thanks!
Tina your writing really resonates with me. After the loss of my daughter Alix, my view of disaster and the anxieties of life also changed forever. I love seeing your beautiful photos of Kiki. She reminds me of my blonde-haired daughter Alix. I can't wait to read your upcoming memoir!
I'm sure it will be worth the wait for your memoir! Meanwhile I have the privilege of reading your posts on your amazing travels both literally across the country and spiritually as well.
I have a food allergic 3yo daughter (also to dairy, plus some other things) and we live in Amherst. I first learned Kiki’s story at a salon in Northampton where she used to work. The stylist started crying as he showed me her picture. I later happened upon your piece in the NYT and realized you were her mom. Thank you for your honest and beautiful writing. Although I didn’t know Kiki personally, I think of her often.
Hi Caitlin, thanks so much for commenting. I love hearing that you have a connection to Kiki's life through Herdis. You must have had your hair cut by Alex. Kiki loved her job and friends there. She lived in Amherst for a year before moving to Northampton. Our favorite thing was going to the Cinema and then Oriental Flavor after.
Being a food allergy parent is challenging and I think it's one of those things that people have a hard time relating to, which is why I wanted to write about it. But at least you are in a good area for food choices. So much quality and variety of food in the Valley, and more allergy awareness than in a lot of places. Right now we are in rural South Carolina and finding dairy-free anything is almost impossible!
Hi Teen, it's taken me a while to get to this installment. After going months without being around people, I did a gig at the Hollywood Bowl and promptly came down with Covid. It kicked my ass, not as bad as the pre-vaccine version that we had but it was still bad. I've been waiting until I felt good enough to read your latest. We tend to take "feeling good" for granted and when we don't some of us (me) don't fare very well. The challenges that you have had to face have been so huge. Getting through the horrible ordeal of cancer and then the worst thing that could happen to anyone - losing their child... This story in your continuing "book" is beautiful and again so sad. The thing that made me shed a tear was the picture of Kiki with that beautiful blond hair. You had that same blond hair as a child. The look on her face seems to be happy-sad...I know that I'm reading more into it but it just struck my heart. She was one of God's perfect creatures....love, Mike
❤️ Love you and thanks for always leaving a comment. I really love knowing that you are reading these stories. That picture is one of my favorites too. We hardly took any pics on that trip so I just have a few precious ones. Talk to you soon
This was such a tender read. Thank you Tina! I am new to motherhood (and the worries that come with it, naturally, subconsciously) to a soon to be 11 month old. And we're going through the allergies right now. When I grew up we also didn't think much about allergies but now its' recommended to give her each of the 9 allergens twice a week. I never know if one day she will develop something. There are so many unknowns in this journey.
I really love the way you capture both beauty and heartbreak in this piece, and loved the pictures! Kiki was gorgeous 🧡
Hi Joscelyne, thank you, I'm so pleased you enjoyed this piece. I just read some of your posts, and you write so beautifully about your life, art, and early motherhood. I was taken back to memories of that precious time of motherhood that you are in now with your daughter.
You are right, there are so many unknowns but it's also ok to trust that all will be well. Thanks for being here. 💛
I love the title of this piece. Please don't mess with the bread. It adds humor but unless someone has food allergies or knows someone with severe allergies, it's not taken seriously.
I've have food allergies since I was 18. Environmental for my whole life. When I was 31, I had an anaphylactic reaction to peanut. I've had allergy shots for years. During different times of my life I've avoided shellfish, dairy, all nuts. About 6 years ago, I accidentally ingested peanut oil and was ok. I was tested and was no longer allergic to them. It took a year before I tried them.
Now I can eat all nuts except for hazelnuts. I don't eat shellfish because even though I was told I could, I had a severe reaction to that and salmon. Who knows why.
I don't eat dairy, am gluten free, and vegetarian. Anyone want to go to dinner with me?
I have to be a PIA to the wait staff because very often they don't take it seriously. I still carry an Epipen, children's chewable Benadryl, Adult Benadryl, and Benadryl cream. I never know if the next time I eat something, I'll have a reaction.
I try not to let it rule my life or let people's annoyed looks bother me but lack of understanding or empathy is painful.
My heart goes out to you, Tina and sending you a virtual hug.
This writing is hard. I'm glad you're doing it and hope you care for you as you let these words and emotions flow. ❤️
Wow I totally understand what you are dealing with, it's a lot. That need for continual vigilance is very stressful. And of course you don't want to let it rule your life but you can't ever let your guard down. Thanks for reading, Janine 💛
Bathroom bread is a fabulous story, as is standing on the pebbled beach listening to the hawk fly above you.
While I cannot image being a Mom to a child with such severe food allergies, I do understand those levels of stress about the unknowable. If I allow my mind to wander, it can spiral into a deep eddy of irrational worry about either or both of my daughters. I do my best to never let my mind roam that far unleashed.
It is impossible to believe the world has gone on since Keek died.
I’m so grateful that you continue to share the stories of her. And allow us to love her sparkling spirit too.
Thanks for another installment in sharing your & Eric’s journey.
There are bits and pieces that everyone can relate to and your stories fill us with wonder and mostly we listen and learn and thank you for explaining the common bond most of us are unaware of.
I loved hearing what sounded like a titmouse or chickadee in the background when you were reading. The wind is howling up here on the hill today, and I'm thinking of the bit you wrote about enjoying that wind. I do feel that insignificance at times, and it is unexpectedly soothing. Better not to get too worked up about things except what's right in front of me. Warm house, dozing dog, reading your great post in a comfy chair, thinking how I'm going to prepare the big bag of brussel sprouts dad brought home. This moment is Ok.
Thank you Kristen! Warm house, Nanna, brussel sprouts, all sound good. I miss that cozy feeling of late Fall. (A little bit. Not too much lol)
I have been using the Merlin app so I can identify more birds. There are so many different species here, it's overwhelming! Saw a bald eagle just casually hanging out on the beach the other day. Love you too 💛
I listen to it during my walk. It is so beautiful and touching that I stopped to leave a comment. You are do brave and special. I feel connected to you. Thanks for writing this story. You are by no means insignificant.
Thank you Neera! I am glad we're connected. That is my greatest hope in writing here, to connect with others and understand each other's feelings and experiences. Thanks for reading.
Some days are really hard. For no apparent reason.
Sometimes, I find myself laughing hysterically. I thought I’d never smile again. I feel a pang of guilt, before giving myself permission to be happy. For no apparent reason.
Thank you Tina. And Eric. For everything you share. My favorite picture is the first one. Those tiny sunglasses. Oh my heart. I have learned there is no rhyme or reason in grief. Only it’s consistency. I’ll be looking forward to seeing your tattoo and your memoir. I really appreciate that you read your piece. I always listen to it.
Thanks so much Julia. Yes, I love that picture too! We only took a few photos on that trip, hard to believe now but we didn't have smartphones. So the few pics we have are precious.
Thank you Tina for your sharing and stories of little Kiki. Looking forward to all your writing. I am recuperating from breast cancer, and consider myself fortunate after reading your family's story. from Terri Cerrigone
Hi Theresa, it's good to hear from you. Somehow I missed seeing your comment last month and I'm just reading it now. I am so sorry to hear you have been dealing with breast cancer. I had it too, a few years ago. It's a tough road and I'm glad to know you are recuperating now. It takes a long time to recover.
Thanks so much for reading and commenting 💛
How happy I was to see your post this snowy morning. I was and still am confused about reading your postings which I subscribed to.....did I do it correctly? Love hearing your stories from "on the road." I am trying to write, as you will agree it helps our mental health. Went back to memoir group. One of our writers, Nettie Jonah (I think you may have helped her with her book. She was in her high nineties and has passed.
I am still heartbroken for you and Kiki's dad. I'm not sure how you cope. Just as an aside, I know you will be interested, my grandson, age 22, is going to join the Peace Corps when he graduates from Brown in a few months. I am heartbroken that I will not see him for 2 years. I'm foolish about this, but I can't help being sad (and happy).
I wanted to order a few more of my books. Gave many away. Not sure if you can or wish to do this for me. If you would rather not, I'll just order from Amazon. I was hoping you made a few dollars when you ordered. Sending all my love and best today. Fondly, Terri
Beautiful blonde Kiki looks into camera with eyes wise to the beauty and wonder of this world. Thank you for writing so powerfully and honestly. Your skill is evident in each carefully chosen word.
Hi Cathy, thank you so much for reading and commenting. I appreciate you being here!
I'm so sorry for your loss, and thank you for this thoughtful look into the anxiety that comes along with allergies. "When the deadly enemy is one of the most common substances in daily life, when the enemy is food, there is no way to not be always on alert" really resonated with me as someone with allergies myself.
Hi Zoe, good to hear from you. I thought your post on food allergy anxiety was really good. Anxiety is an aspect of food allergies that could use more attention. Thanks!
Tina your writing really resonates with me. After the loss of my daughter Alix, my view of disaster and the anxieties of life also changed forever. I love seeing your beautiful photos of Kiki. She reminds me of my blonde-haired daughter Alix. I can't wait to read your upcoming memoir!
It's so good to hear from you Julie. We were both lucky to have our little blonde girls.
I only took a few photos on that trip (before smartphones) so I treasure the ones I have.
The memoir may be a long time in the works but writing here on Substack is part of the progress. Thanks for being here.
I'm sure it will be worth the wait for your memoir! Meanwhile I have the privilege of reading your posts on your amazing travels both literally across the country and spiritually as well.
I have a food allergic 3yo daughter (also to dairy, plus some other things) and we live in Amherst. I first learned Kiki’s story at a salon in Northampton where she used to work. The stylist started crying as he showed me her picture. I later happened upon your piece in the NYT and realized you were her mom. Thank you for your honest and beautiful writing. Although I didn’t know Kiki personally, I think of her often.
Hi Caitlin, thanks so much for commenting. I love hearing that you have a connection to Kiki's life through Herdis. You must have had your hair cut by Alex. Kiki loved her job and friends there. She lived in Amherst for a year before moving to Northampton. Our favorite thing was going to the Cinema and then Oriental Flavor after.
Being a food allergy parent is challenging and I think it's one of those things that people have a hard time relating to, which is why I wanted to write about it. But at least you are in a good area for food choices. So much quality and variety of food in the Valley, and more allergy awareness than in a lot of places. Right now we are in rural South Carolina and finding dairy-free anything is almost impossible!
Thank you for being here.
Hi Teen, it's taken me a while to get to this installment. After going months without being around people, I did a gig at the Hollywood Bowl and promptly came down with Covid. It kicked my ass, not as bad as the pre-vaccine version that we had but it was still bad. I've been waiting until I felt good enough to read your latest. We tend to take "feeling good" for granted and when we don't some of us (me) don't fare very well. The challenges that you have had to face have been so huge. Getting through the horrible ordeal of cancer and then the worst thing that could happen to anyone - losing their child... This story in your continuing "book" is beautiful and again so sad. The thing that made me shed a tear was the picture of Kiki with that beautiful blond hair. You had that same blond hair as a child. The look on her face seems to be happy-sad...I know that I'm reading more into it but it just struck my heart. She was one of God's perfect creatures....love, Mike
❤️ Love you and thanks for always leaving a comment. I really love knowing that you are reading these stories. That picture is one of my favorites too. We hardly took any pics on that trip so I just have a few precious ones. Talk to you soon
This was such a tender read. Thank you Tina! I am new to motherhood (and the worries that come with it, naturally, subconsciously) to a soon to be 11 month old. And we're going through the allergies right now. When I grew up we also didn't think much about allergies but now its' recommended to give her each of the 9 allergens twice a week. I never know if one day she will develop something. There are so many unknowns in this journey.
I really love the way you capture both beauty and heartbreak in this piece, and loved the pictures! Kiki was gorgeous 🧡
Hi Joscelyne, thank you, I'm so pleased you enjoyed this piece. I just read some of your posts, and you write so beautifully about your life, art, and early motherhood. I was taken back to memories of that precious time of motherhood that you are in now with your daughter.
You are right, there are so many unknowns but it's also ok to trust that all will be well. Thanks for being here. 💛
I love the title of this piece. Please don't mess with the bread. It adds humor but unless someone has food allergies or knows someone with severe allergies, it's not taken seriously.
I've have food allergies since I was 18. Environmental for my whole life. When I was 31, I had an anaphylactic reaction to peanut. I've had allergy shots for years. During different times of my life I've avoided shellfish, dairy, all nuts. About 6 years ago, I accidentally ingested peanut oil and was ok. I was tested and was no longer allergic to them. It took a year before I tried them.
Now I can eat all nuts except for hazelnuts. I don't eat shellfish because even though I was told I could, I had a severe reaction to that and salmon. Who knows why.
I don't eat dairy, am gluten free, and vegetarian. Anyone want to go to dinner with me?
I have to be a PIA to the wait staff because very often they don't take it seriously. I still carry an Epipen, children's chewable Benadryl, Adult Benadryl, and Benadryl cream. I never know if the next time I eat something, I'll have a reaction.
I try not to let it rule my life or let people's annoyed looks bother me but lack of understanding or empathy is painful.
My heart goes out to you, Tina and sending you a virtual hug.
This writing is hard. I'm glad you're doing it and hope you care for you as you let these words and emotions flow. ❤️
Wow I totally understand what you are dealing with, it's a lot. That need for continual vigilance is very stressful. And of course you don't want to let it rule your life but you can't ever let your guard down. Thanks for reading, Janine 💛
Bathroom bread is a fabulous story, as is standing on the pebbled beach listening to the hawk fly above you.
While I cannot image being a Mom to a child with such severe food allergies, I do understand those levels of stress about the unknowable. If I allow my mind to wander, it can spiral into a deep eddy of irrational worry about either or both of my daughters. I do my best to never let my mind roam that far unleashed.
It is impossible to believe the world has gone on since Keek died.
I’m so grateful that you continue to share the stories of her. And allow us to love her sparkling spirit too.
Thank you so much Teyani. I think it is impossible not to worry about our children no matter how old or independent they are.
I appreciate that you enjoy these stories of Keek. She lives on this way.
Thanks for another installment in sharing your & Eric’s journey.
There are bits and pieces that everyone can relate to and your stories fill us with wonder and mostly we listen and learn and thank you for explaining the common bond most of us are unaware of.
Thank you Steve, I always appreciate having you as a reader!
I loved hearing what sounded like a titmouse or chickadee in the background when you were reading. The wind is howling up here on the hill today, and I'm thinking of the bit you wrote about enjoying that wind. I do feel that insignificance at times, and it is unexpectedly soothing. Better not to get too worked up about things except what's right in front of me. Warm house, dozing dog, reading your great post in a comfy chair, thinking how I'm going to prepare the big bag of brussel sprouts dad brought home. This moment is Ok.
Love you, Tina
Thank you Kristen! Warm house, Nanna, brussel sprouts, all sound good. I miss that cozy feeling of late Fall. (A little bit. Not too much lol)
I have been using the Merlin app so I can identify more birds. There are so many different species here, it's overwhelming! Saw a bald eagle just casually hanging out on the beach the other day. Love you too 💛
I listen to it during my walk. It is so beautiful and touching that I stopped to leave a comment. You are do brave and special. I feel connected to you. Thanks for writing this story. You are by no means insignificant.
Thank you Neera! I am glad we're connected. That is my greatest hope in writing here, to connect with others and understand each other's feelings and experiences. Thanks for reading.
This is just lovely
Thank you Amy
I don’t think you ever “get over it.”
Some days are really hard. For no apparent reason.
Sometimes, I find myself laughing hysterically. I thought I’d never smile again. I feel a pang of guilt, before giving myself permission to be happy. For no apparent reason.
Ebb and Flow. Wax and Wane. Joy and Pain.
Thank you for sharing your beautiful heart.
Thank you Deborah, I appreciate you being here.
So beautiful. Thank you for sharing your story and so sorry for your unimaginable loss.
Thank you Cindy. I appreciate your writing, especially about your experiences with allergies.
Thank you Tina. And Eric. For everything you share. My favorite picture is the first one. Those tiny sunglasses. Oh my heart. I have learned there is no rhyme or reason in grief. Only it’s consistency. I’ll be looking forward to seeing your tattoo and your memoir. I really appreciate that you read your piece. I always listen to it.
Thanks so much Julia. Yes, I love that picture too! We only took a few photos on that trip, hard to believe now but we didn't have smartphones. So the few pics we have are precious.
Thank you for listening!