"I have come to see with the eyes of my heart now.
I am drawn to Sarah’s natural ability to love."
Beautiful Jeannie. It's interesting how anger often gets a bad rap. Anger, rage, vengance are uncomfortable emotions, deeply so. For me I've discovered that anger and rage are both "hot", full of fire and by contrast vengeance is cold, full of ice. While vengeance is something we can feel, I believe it is not something intended for us to own. Conversely, anger is. As humans, we can learn a lot through anger. It is a fire that can temper, purify, and strengthen. They are all qualities that add value to who we are. Fire can also destroy when out of control. How incredible that you have used your writing to express, own, sort through, make sense of, the experiences of life including the anger and rage you felt against your God and be brought to a place where "I have come to see with the eyes of my heart now." Phenomenal. Thank you for sharing.
Wow, Melanie, I have never heard that before, but that’s beautiful—that anger is a “hot” emotion, while vengeance (and, by extension, I will add bitterness and resentment here) are “cold.” You are right that the hot emotions can stir into flame something good, constructive. Thank you. I needed to read that today.
I so appreciate your honesty, as always, in your writing. I also understand how a person can get angry at God, too. I've had anger toward God my being a good person and for getting cancer anyway. Luckily, I no longer feel that way. We are all human and are so entitled to our feelings; complex feelings are part of being human.
I never liked the expression, "Only a face a mother could love," and I hate the ideals of beauty that our society fosters. And the best of us fall into that trap of judging a book by its cover.
I love how you and Sarah love each other. All we can each do is be the best parent possible to our kids and hope for the best.
You’re right, Beth—”a face only a mother could love” is a perfect springboard into the conversation surrounding beauty culture. I am co-hosting a Live with my friend Mansi on this topic on Friday, June 27th. You gave me an inspiration on how we could begin. Thank you!
I've been listening to Walter Isaacson's biography of Einstein. Your comments about being a cradle Catholic and being angry with God and your spiritual director's response about questions and answers made me think of this...
"The important thing is to never stop questioning. Never lose a holy curiosity." ~Albert Einstein
YES! Teri Leigh, I love that—”holy curiosity.” That is spot on. I just love you, friend, and everything you teach me. Seriously—every single time I read something you share or we talk, I learn something new.
from a zoomed out perspective, I wonder if Sarah and her Apert syndrome is all about opening you up beyond the "cradle Catholic" into a "holy curiosity" about all the mystical things about life.
YES, Teri Leigh, that’s such a great insight. So clarifying. I hadn’t thought about that before—”from cradle Catholic to holy curiosity” might actually be a title for an essay. :) THANK YOU!
Such a beautiful and profound piece Jeannie. The world needs more of your stories, in just the way you write. I can see the love manifesting its way out of Sarah in the pictures you share. 🙏
Interestingly, I wrote a piece last year by almost the same title as your perspective, I have come to see with the eyes of my heart. In case you’re interested, here it is.
Just read this, James, as I am catching up on Substack today! I really enjoyed our conversation. It was so enriching just to connect with you, James. We’ll have to do it again later this fall.
Jeannie, the pleasure was totally mine! Such a great conversations and to think EMDR was what brought us together in the first place! I look forward to being deeply in touch.
Jeannie, so incredibly beautiful, strong, honest and open. I loved this: ‘I have come to see with the eyes of my heart now.
I am drawn to Sarah’s natural ability to love.’ My younger sister was born with a facial difference due to neurofibrmatosis. I never saw the ‘unacceptable’ differences some children and adults would point out when I was out together with my mom & siblings. She was just my cute and sometimes annoying sister, 6 years younger than me. And I know the reason I only saw beauty in my sister’s face (and still do) is because of my mother and the way she loved my little sister and handled respectfully but firmly the questions or taunts that came my sister’s way. Having a sibling with a physical difference and unconventional beauty has helped me to be more compassionate towards all of our beautiful differences. My late mother’s greatest legacy, 💗thank you for choosing to write about Sarah (and for her participation so generously on your videos!) because we all need that understanding and compassion.
Wow, Amy, I feel incredibly grateful you shared all of that here. I didn’t know you grew up with a sister who has a facial difference. It’s good to hear your vantage point as a sibling, because I often wonder what my other kids might think or feel growing up alongside Sarah. Much as you wrote here, they seem to just see Sarah—nothing more, nothing less. She is who she is to them, no different than any other person. It’s only when Sarah shares with the family that someone called her a monster or witch that my other kids will start to cry. They know her. They SEE her. And they love her.
Those questions people ask... Sometimes people come across as if they are entitled to details of your life, or in this case, your daughter's life.
Once again, I so relate to this. I started my blog (also Word Press for same reason) after my cancer diagnosis. Different darkness, but my path out was also writing. From the beginning, I vowed to sugarcoat nothing, share realities, and offer inclusiveness and validation. That's what I still try to do here on Substack. I've expanded what topics I write about now, but that's how my writing (on the internet anyway) began.
Thank you for sharing about your ongoing writing journey. And I love the photo, too.
Nancy, I really appreciate this. It’s so good to be with someone like you who has the emotional intelligence to recognize the value and power of naming her darkness and putting it on the page. That’s a huge step very few people get to, in my experience as a former grief writer.
You are the absolute BEST, Jeannie Ewing. When I was a genetic counselor, a mother like you, one who could access the hurt and horror along with the hope and humanity would have been invaluable for other families going through a new diagnosis. That's how I often feel here, like I'm going through a new diagnosis of life, and I am so grateful to have you leading the way.
You’re such a gem, Jess, and truthfully, if we had had a genetic counselor like you when Sarah was first born, I have full confidence that I wouldn’t have felt so lonely, so overwhelmed, so lost. You are such a gift.
Now that I have my own daughter, I realize how important it is to have that one person that gives you permission to feel however you feel about a diagnosis. At the time, I just hope I showed up for those families. And I’m grateful that I get the chance to show up for people like you now. 🧡
I have no doubt that you did show up, Jess. I can’t wait to chat with you again this fall! I really enjoyed our conversation last month. You are truly a gem.
Likewise! I find that conversations like ours give me energy, ignore my creative spirit, and remind me how much more to life there is than our day to day AND, how much generosity of spirit we can spread in our day to day.
Yes, Jess! I would love to chat with you again sometime and share some of the creative insights and gems that have been floating in my head since I returned from the conference. I know you would have so many substantive offerings in these topics.
Thank you, Jeannie, for finding the courage to share your stories. It is immensely helpful. And you're so very young, which to me, shows incredible strength of character, facing these challenges head on.
Perhaps I should say, I know a little of your journey, a tiny little corner.
Eileen, how beautiful to read your words today after a long but fruitful day. I don’t feel young, I guess, because I am midlife. So in truth, I am not young. At the same time, I have been called an old soul since I was probably twelve! So it’s just there, inside me—wisdom, maybe? Insight? I don’t exactly know.
Thanks for your words. It takes courage to write about how one feels and how one reacts to others. Well done young lady. I Agree with Janet Lehr - keep writing!!!
I can only imagine those days before the birth of the blog, and the maelstrom of thoughts and feelings of dizzying proportions. I can only say that if writing saved you and helped you move forward in a world which no longer made perfect orderly sense to you, then writing is your calling. I have found that when I honestly seek an answer, it will come. And when I seek to understand that answer, I will… eventually. Thank you for another in your series of beautiful essays.
Yes, I’m still seeking at least some guidance on my memoir getting published, and nothing comes…yet. But I will wait. Thank you, Heather. I do believe it is a calling, too.
Oops! Hit Enter too quickly. I meant to say what an adorable picture of your girls! I love Sarah's hair pulled back with bow. It spotlights her beautiful smile. As always, your work is outstanding.
Jeannie, you are an example for other mothers to follow when dealing with "child-born diseases." I have also expressed my anger with God for a different reason dealing with health. You are right about how writing does help. Caregiving for a loved one enhances our love for them. You are an example of that.
Thanks for saying that, Sammie. Sounds like you have your own story, as well. I am curious about how writing helped you through your own caregiving journey?
"Only love creates.” this is so apt and beautiful. I do believe we need each other's words and stories. I'm glad to have found yours and vice versa. Life is random; I feel that love is the only real answer to the question why...💜
I’m grateful for you, Julie. You subscribed to my Substack when I was a newbie here, and it matters so much to me that you have stuck around. Thank you for supporting my creative work. I can’t wait to get your book! Wish I could find a home for mine…that’s kinda why I feel pretty low today after attending my first writing conference in ten years.
Back at you! I'm sure your book will find a home too. A matter of time. Its definitely a harder landscape out there, even just in terms of publishing articles. Maybe part of the frustration comes from having been so successful early on 🤔
Yes, that makes sense, Julie. Part of my frustration is that I used to be a fairly successful Catholic author, and I walked away from all of it. I lost my freelance income, speaking income, etc. I mean, it was intentional, but now I am frustrated with myself that I am essentially starting over.
"I have come to see with the eyes of my heart now.
I am drawn to Sarah’s natural ability to love."
Beautiful Jeannie. It's interesting how anger often gets a bad rap. Anger, rage, vengance are uncomfortable emotions, deeply so. For me I've discovered that anger and rage are both "hot", full of fire and by contrast vengeance is cold, full of ice. While vengeance is something we can feel, I believe it is not something intended for us to own. Conversely, anger is. As humans, we can learn a lot through anger. It is a fire that can temper, purify, and strengthen. They are all qualities that add value to who we are. Fire can also destroy when out of control. How incredible that you have used your writing to express, own, sort through, make sense of, the experiences of life including the anger and rage you felt against your God and be brought to a place where "I have come to see with the eyes of my heart now." Phenomenal. Thank you for sharing.
Wow, Melanie, I have never heard that before, but that’s beautiful—that anger is a “hot” emotion, while vengeance (and, by extension, I will add bitterness and resentment here) are “cold.” You are right that the hot emotions can stir into flame something good, constructive. Thank you. I needed to read that today.
Thank you for sharing
I’m enjoying reading your posts
How could anyone not be interested in pure, loving , charming and sweet Sarah
Hi Sarah
You are lovely
☺️
Thanks, Sandy.
You’re welcome sweetheart
🤗
Keep writing Jeannie! Your voice means so much!
Thank you so much, Janet!
Hi Jeannie,
I so appreciate your honesty, as always, in your writing. I also understand how a person can get angry at God, too. I've had anger toward God my being a good person and for getting cancer anyway. Luckily, I no longer feel that way. We are all human and are so entitled to our feelings; complex feelings are part of being human.
I never liked the expression, "Only a face a mother could love," and I hate the ideals of beauty that our society fosters. And the best of us fall into that trap of judging a book by its cover.
I love how you and Sarah love each other. All we can each do is be the best parent possible to our kids and hope for the best.
You’re right, Beth—”a face only a mother could love” is a perfect springboard into the conversation surrounding beauty culture. I am co-hosting a Live with my friend Mansi on this topic on Friday, June 27th. You gave me an inspiration on how we could begin. Thank you!
I've been listening to Walter Isaacson's biography of Einstein. Your comments about being a cradle Catholic and being angry with God and your spiritual director's response about questions and answers made me think of this...
"The important thing is to never stop questioning. Never lose a holy curiosity." ~Albert Einstein
YES! Teri Leigh, I love that—”holy curiosity.” That is spot on. I just love you, friend, and everything you teach me. Seriously—every single time I read something you share or we talk, I learn something new.
from a zoomed out perspective, I wonder if Sarah and her Apert syndrome is all about opening you up beyond the "cradle Catholic" into a "holy curiosity" about all the mystical things about life.
YES, Teri Leigh, that’s such a great insight. So clarifying. I hadn’t thought about that before—”from cradle Catholic to holy curiosity” might actually be a title for an essay. :) THANK YOU!
Such a beautiful and profound piece Jeannie. The world needs more of your stories, in just the way you write. I can see the love manifesting its way out of Sarah in the pictures you share. 🙏
Interestingly, I wrote a piece last year by almost the same title as your perspective, I have come to see with the eyes of my heart. In case you’re interested, here it is.
https://open.substack.com/pub/onmoneyandmeaning/p/peter-and-linda-biehl-story-of-forgiveness?r=3bqj2&utm_medium=ios
I look forward to connecting tomorrow.
Just read this, James, as I am catching up on Substack today! I really enjoyed our conversation. It was so enriching just to connect with you, James. We’ll have to do it again later this fall.
Jeannie, the pleasure was totally mine! Such a great conversations and to think EMDR was what brought us together in the first place! I look forward to being deeply in touch.
Same, James. Let’s circle back in the fall for another conversation if you’d like. My kids will be in school then.
Jeannie, so incredibly beautiful, strong, honest and open. I loved this: ‘I have come to see with the eyes of my heart now.
I am drawn to Sarah’s natural ability to love.’ My younger sister was born with a facial difference due to neurofibrmatosis. I never saw the ‘unacceptable’ differences some children and adults would point out when I was out together with my mom & siblings. She was just my cute and sometimes annoying sister, 6 years younger than me. And I know the reason I only saw beauty in my sister’s face (and still do) is because of my mother and the way she loved my little sister and handled respectfully but firmly the questions or taunts that came my sister’s way. Having a sibling with a physical difference and unconventional beauty has helped me to be more compassionate towards all of our beautiful differences. My late mother’s greatest legacy, 💗thank you for choosing to write about Sarah (and for her participation so generously on your videos!) because we all need that understanding and compassion.
Wow, Amy, I feel incredibly grateful you shared all of that here. I didn’t know you grew up with a sister who has a facial difference. It’s good to hear your vantage point as a sibling, because I often wonder what my other kids might think or feel growing up alongside Sarah. Much as you wrote here, they seem to just see Sarah—nothing more, nothing less. She is who she is to them, no different than any other person. It’s only when Sarah shares with the family that someone called her a monster or witch that my other kids will start to cry. They know her. They SEE her. And they love her.
Hi Jeannie,
Those questions people ask... Sometimes people come across as if they are entitled to details of your life, or in this case, your daughter's life.
Once again, I so relate to this. I started my blog (also Word Press for same reason) after my cancer diagnosis. Different darkness, but my path out was also writing. From the beginning, I vowed to sugarcoat nothing, share realities, and offer inclusiveness and validation. That's what I still try to do here on Substack. I've expanded what topics I write about now, but that's how my writing (on the internet anyway) began.
Thank you for sharing about your ongoing writing journey. And I love the photo, too.
Nancy, I really appreciate this. It’s so good to be with someone like you who has the emotional intelligence to recognize the value and power of naming her darkness and putting it on the page. That’s a huge step very few people get to, in my experience as a former grief writer.
You are the absolute BEST, Jeannie Ewing. When I was a genetic counselor, a mother like you, one who could access the hurt and horror along with the hope and humanity would have been invaluable for other families going through a new diagnosis. That's how I often feel here, like I'm going through a new diagnosis of life, and I am so grateful to have you leading the way.
You’re such a gem, Jess, and truthfully, if we had had a genetic counselor like you when Sarah was first born, I have full confidence that I wouldn’t have felt so lonely, so overwhelmed, so lost. You are such a gift.
Now that I have my own daughter, I realize how important it is to have that one person that gives you permission to feel however you feel about a diagnosis. At the time, I just hope I showed up for those families. And I’m grateful that I get the chance to show up for people like you now. 🧡
I have no doubt that you did show up, Jess. I can’t wait to chat with you again this fall! I really enjoyed our conversation last month. You are truly a gem.
Likewise! I find that conversations like ours give me energy, ignore my creative spirit, and remind me how much more to life there is than our day to day AND, how much generosity of spirit we can spread in our day to day.
Yes, Jess! I would love to chat with you again sometime and share some of the creative insights and gems that have been floating in my head since I returned from the conference. I know you would have so many substantive offerings in these topics.
Let’s do it!
Thank you, Jeannie, for finding the courage to share your stories. It is immensely helpful. And you're so very young, which to me, shows incredible strength of character, facing these challenges head on.
Perhaps I should say, I know a little of your journey, a tiny little corner.
Keep writing.
Your words fall in the right places.
With love.
Eileen, how beautiful to read your words today after a long but fruitful day. I don’t feel young, I guess, because I am midlife. So in truth, I am not young. At the same time, I have been called an old soul since I was probably twelve! So it’s just there, inside me—wisdom, maybe? Insight? I don’t exactly know.
Thanks for your words. It takes courage to write about how one feels and how one reacts to others. Well done young lady. I Agree with Janet Lehr - keep writing!!!
Thanks, Roberta!
I can only imagine those days before the birth of the blog, and the maelstrom of thoughts and feelings of dizzying proportions. I can only say that if writing saved you and helped you move forward in a world which no longer made perfect orderly sense to you, then writing is your calling. I have found that when I honestly seek an answer, it will come. And when I seek to understand that answer, I will… eventually. Thank you for another in your series of beautiful essays.
Yes, I’m still seeking at least some guidance on my memoir getting published, and nothing comes…yet. But I will wait. Thank you, Heather. I do believe it is a calling, too.
Oops! Hit Enter too quickly. I meant to say what an adorable picture of your girls! I love Sarah's hair pulled back with bow. It spotlights her beautiful smile. As always, your work is outstanding.
Thanks, Becky! I appreciate hearing that.
What an adorable picture of you
Jeannie, you are an example for other mothers to follow when dealing with "child-born diseases." I have also expressed my anger with God for a different reason dealing with health. You are right about how writing does help. Caregiving for a loved one enhances our love for them. You are an example of that.
Thanks for saying that, Sammie. Sounds like you have your own story, as well. I am curious about how writing helped you through your own caregiving journey?
"Only love creates.” this is so apt and beautiful. I do believe we need each other's words and stories. I'm glad to have found yours and vice versa. Life is random; I feel that love is the only real answer to the question why...💜
I’m grateful for you, Julie. You subscribed to my Substack when I was a newbie here, and it matters so much to me that you have stuck around. Thank you for supporting my creative work. I can’t wait to get your book! Wish I could find a home for mine…that’s kinda why I feel pretty low today after attending my first writing conference in ten years.
Back at you! I'm sure your book will find a home too. A matter of time. Its definitely a harder landscape out there, even just in terms of publishing articles. Maybe part of the frustration comes from having been so successful early on 🤔
Yes, that makes sense, Julie. Part of my frustration is that I used to be a fairly successful Catholic author, and I walked away from all of it. I lost my freelance income, speaking income, etc. I mean, it was intentional, but now I am frustrated with myself that I am essentially starting over.
And freelancing is so much harder these days, I'm finding!
I am finding the same thing, Julie. UGH