I’ve always wanted to sign up for your course and look forward to the treehouse talk tomorrow as well.
As I step out of the rubble of the most traumatic year of my life, I finally understand that I’m worth the investment NOW and not down the road when everyone else is looked after. This mindset is not one of ‘me first’, but rather ’me too’. From one mother to another,
may the wind blow the dust away,
the sun wrap us in warmth,
the salt water heal our wounds, and
may the path forward be intentional and meandering 💙
Wow. This beautiful self-proclamation brought me to tears. I feel such solidarity in your words and commitment. How lucky I am to navigate this spring healing journey with you! See you tomorrow night!
This speaks to me on so many levels! I want to come back to it and have a longer, closer look at those pieces! I think as parents, we do so much more than we realize and it is captured in moments like those photographs. That is where we need to focus. Thank you! We all have this so much more than we realize. We can’t protect them from everything and that actually is not the bigger plan. We all have those mountains to climb and we wouldn’t become who we are without them. You are so right when you point out all the people that are a part of the paintings and the bigger picture in general. We are all meant to be. Sending love and hugs. Parenting is hard and rewarding and you soooo have it!
Wow! Did I need Rachel's words and yours today! While I listened to Rachel's piece I came across the same thinking as you. " We can't protect them from everything and that is not actually the bigger plan." My friend once told me, "We can't steal their struggle." I think as a person working through her own trauma and healing, sometimes we want to just say I don't want you to go through this, yet look at us as you say... " We have all these mountains to climb, and we wouldn't become who we are without them." We don't know what their mountains will be, but though our journey as Rachel speaks of and models we can use it to be there for them. We can be the model and the guide because we have been through it! Thanks for your beautiful words of honesty that connected with me so deeply today!
"We can't steal their struggle." Wow. I just love that perspective. It has been a hard road for me watching my daughter go through anorexia. But I feel strengthened by this, and by talking with other parents watching their children go through similar difficulties. Thank you for sharing.
What a beautifully raw and honest post. That exhibition is amazing and a real testament to the young people who are confronting the injustices and traumas in their lives.
Our family suffered a huge loss and trauma in 2013 and it has changed our family forever, shaken and cracked the very foundations of who we were/are. The guilt and blame was almost paralysing and has taken a long time to ease, but I do try to remind myself that I did the best I could at the time with what I knew and understood.
Thank you for sharing your stories with us, Rachel. They help to make us stop and reflect.
I am so sorry to know what you and your family have experienced. Your words make me wish I could reach through this screen and hug you. Thank you for working to offer yourself the grace and acceptance you are so worthy of. You make me want to continue trying as well. Hand in hand, we shall.
Wow!! I know I’m going to have to read this again. man there is so much truth, so much emotion, so much depth and so much more here. I’m so glad to know Avery is reclaiming her beautiful light and using that in such a positive way. I’m so glad you are experience some healing from the horrible trauma. I’m so thankful for your thought provoking words here and the art you shared. You were obviously so meant to be in that place at that time and experience the amazing pieces of these students’ heart. The pics of you and your girls send out so much warmth and love…reminders of times with my girls at that age. And this piece is full of other reminders for me too! Grateful for you and your words. I’ll be there with my hand in yours tonight!💗
First - what time is the zoom meet up tomorrow? I would like to be there.
Second, your quote "let's not forget those who were present in their pain" convicted me today. I thought about how so few of us really do that and what a treasure it is to find those who do.
One of the things I'm trying to work on is self forgiveness at all the ways I believe I have "failed" my children. When I was severely depressed, I knew it affected them. I knew it hurt them deeply. I knew it when I was suffering through it and I hated myself at the time for my inability to be emotionally available to them.
Sometimes I feel like I know too much about child development and attachment theory and trauma, based on my education in counseling.
But in reading what you wrote today, I realized that you're right - it truly is futile for me to blame myself for everything that happens to my kids. When something is my fault, I can repair and reconnect with them, which I am learning to do. But not everything is within my control to prevent.
That, to me, is one of the greatest heartaches I have as a mom - that I can't prevent my kids from experiencing betrayal and rejection and even possibly trauma. I can only be a safe landing place for them when hurts happen.
Hi Jeannie! The Zoom gathering is at 8pm Eastern tonight! I would so love if you could be there (even part of it would be a treat for me!)
Thank you for sharing how my words brought some comfort to your own experience with parental blame. It helped me so much to read your vulnerable third paragraph. I have had my own periods of depression when I was unavailable to my children - but in reading your words, I felt compassion for you, which in turn, became more compassion for my past self who was just trying her best to make it to the next day. Thank you for this.
Jeannie, I know your life is full and you could be doing so many wonderful things with your time and energy - but the fact you choose to spend them here with me is everything. These exchanges we share in this loving space fuel me. Writing into a void is hard. Thank you for never letting me feel like I am alone.
Rachel, I can make it at 8 PM tonight! I might be slightly late, as Felicity and I are getting a haircut at 6:30 PM and probably won't be home until 8 sharp. But I can hop on after that.
Just so you know, this is a reciprocal feeling you described in your response. I can't articulate exactly what it's like to be a writer in Fort Wayne, Indiana - with no other writers in my community, no writers guild or group here that I have been able to plug into (one exists but is not very active) - and try to live a creative life without support. To be sharing this space with you fuels my creative energy. It buoys my drooping spirit. Hearing that what I share with you from the heart does the same for you truly fills me with joy.
I concur with what you said about extending compassion for another person and then realizing that you have been that person, or that you can relate to their struggles - and after you realize that, you give yourself the compassion you didn't at the time of your darkness.
What a gift for us to be able to do that for each other! I am so grateful to have found you and connect with you, especially on Substack.
Jeannie - I feel so much kinship with your words. I’m struggling with my own depression caused by the stress of our child enduring continuous medical trauma from birth and SA trauma from experiences three years ago. At nearly seventeen, Kai is slowly healing, but I also realize the medical trauma will be compounded throughout life due to medical issues. I’m hoping the coping skills Kai is learning will help mitigate it, though. I have felt so much guilt throughout Kai’s life wondering if I could have prevented the health issues, the sexual abuse. My head says I can’t protect Kai from everything, my heart says I should as Kai’s mother. It’s hard to find the balance between the reality of not being able to keep harm from your children despite all you do, and doing everything you can to protect them. All I can do is be there, teach Kai and Rylan (our other child, one by heart we’ve informally adopted) to protect themselves, to cope with the hard situations in life, and to always be a safe place to come to for love, support and advice as needed. I’m keeping you in my thoughts and prayers. It sounds like you are an incredible mama who is human, but a good one. 💜
Erin, thank you so much for sharing this. All of it. It's a lot. What our children suffer, we suffer in the heart. I think that's only natural, given the stakes of loving another human. What you said here, about being present to your kids and guiding them through the hardships they have faced and will face, that's the key. That's the point, I think, of love.
For some reason, many of us have learned differently: that being a good parent means raising humans who are "normal" (whatever that means), don't have any real issues or problems, and seem well adjusted, successful, happy, etc. The reality is that everyone is touched by loss and suffering. No one can escape it. So what do we do with that?
I thought a lot about that after our daughter, Sarah, was born 11 years ago. We didn't know when I was pregnant with her, but she has a rare genetic condition called Apert syndrome that affects the development of the skull, face, fingers, and toes (primarily). So we knew right away that Sarah would look different, that she would likely deal with comments and stares from people who don't understand how to love a person who isn't like them.
That's when I realized that my role as a mom wasn't to protect my children from pain. It was to guide them through it somehow, to accompany them, to listen, to walk and journey whatever they walked and journeyed. That's hard. It's much easier to try to insulate ourselves and our families from the very real struggles that people face than to say, together, "Hey, we're not alone. We are here for each other, no matter what."
I think this also has a lot to do with letting go of what we can't control, which is most of life, anyway. Just admitting that most of what our kids go through is beyond what we can manage or prevent. We can teach them good skills about how to be discerning in relationships, how to set and maintain emotional and physical boundaries to navigate this world safely, how to grow when mistakes happen, how to repair relationships when misunderstandings occur. But we can't predict or prevent those things from happening, and that is terrifying to a parent.
So, in my experience, we lean in. We yield to whatever life brings us, and we cope with honesty, forgiveness, and compassion. If my kids grow up to be kind and compassionate humans, then I will feel I have done my job well.
Jeannie - thank you for the beautiful, kind response. Kai was born with two rare syndromes and has undergone many surgeries and procedures. Kai was born Caylen (she/her) but came out as transgender after the sexual assaults. Kai said it’s safer to be male than female. However, that may be slowly changing. But, I’m still here to love and support my child regardless. Kai developed a trauma based alter system (rare form of DID) which most people don’t in. Kai also lost most of his teeth due to years of antibiotics which destroyed them. The amount of ridicule Kai has received has been just awful. We’re working on getting dentures and eventually implants for Kai. But, insurance doesn’t cover it. I know how people can be so cruel about someone who looks different. Also, about kids who they don’t see as “normal”. I’m sure your sweet Sarah has dealt with more than Kai, which hurts my heart. I’m so glad she has you and that you are the beautiful, strong mama that you are!
Thanks for what you shared. It breaks my heart to hear what you and Kai have been through. I agree - it is incredibly cruel to witness and be affected by the reactions of people who don't understand how to be human, how to be kind.
Before I continue, I want to say that it's important for each of us to acknowledge that what we experience isn't necessarily more or less than someone else. What you and your family and Kai have been through is painful, very much so. I wouldn't say that what Sarah has endured is worse, especially since she is still very young and hasn't yet thought about identity in a broader sense as Kai has. What Sarah has been through is hard, and what Kai has been through is also hard.
I guess I just feel like hard is hard, no matter what shapes or forms it takes. And we all have our own definition of what is hard. That's why it matters to me to be able to come together with others who are brave enough to share their hard (like you) and say, hey, we're together. I can be strong for you when you can't find strength for yourself. I can speak kindness and compassion to you when you are burnt out and weary.
That's truly all I've wanted to do with the work I do in writing and speaking.
There's so much to unravel with Kai's life: his appearance due to loss of teeth, the psychological DID diagnosis, the trauma healing, and yes, the insurance battles. (Dental insurance is the WORST for coverage - we know this well with Sarah's teeth. I'm sorry you are dealing with this.)
Above all, Erin, you are loving Kai through it. That's what will bring him healing. No matter what else transpires in his life, it's your love that is shining a light, acting as a beacon so that he knows he is safe, knows he is accepted and loved no matter who he is or what has happened to him. You are his healing hope.
As I reflected on your question/prompt at the end...I actually had the first thought of "Yes, myself." I have been there for myself through this journey. I show up for myself every day and choose to then show up for others. I choose to take my experiences to now turn them into productivity with my writing and photography, and hopefully more with some ideas of bringing people together in community. I feel like this journey has taught me that art, creativity is the best expression for what we are feeling because it is there for others to see and maybe feel a little too. I have an idea to bring young people together to do just that, express themselves with freedom of what is really showing up for them, and truly listen not judge. Our kids have powerful stories to tell and they tell it through honesty. I probably could have spent a whole afternoon with you in front of those billboards. So powerful! I saved them in my brave/inspiration notes on my phone!
I wish you’d been there with me, Cory! You would have appreciated the messages and helped me see more beautiful details I probably missed. You are a gift.
Although I'm not a mother yet, this story resonates, I feel your pain and have seen it in my own lovely amazing mother. It's one of the biggest fears I have for becoming a mother myself, knowing you will never be without worries because of the deep love for your children, knowing bad things will happen, moments of deep pain and sorrow. But that is part of life, and I'm sure the love you get in return is something incomparable.
Your daughter sounds like a fierce and strong person, and with that level of support, she must feel the same about you.
This is the first time I read your work Rachel, but I will definitely read more.
I’m so deeply touched by your beautiful comment, Maria. I have come to believe our most precious commodity is our attention. You gave me this gift and even took it a step further to leave an imprint of goodness that will forever remain. Holding it tenderly. Thank you.
Thank you for sharing that artwork and your experience. Someone shared a quote with me recently - something along the line of “don’t let the disappointments of yesterday stop you from the possibilities of tomorrow.” Also, as a parent of a young adult I find the challenge is always there to keep close or let go.
Oh my gosh! You're right about the heart shape we make in the last picture!!!! This is so special. Thank you, Donna. Please know I am holding you, your youngest child, and your whole family close to my heart as you navigate a difficult year with love, patience, strength, and hope. You are all of those things and more.
Last night I received some disappointing news from my son — he is unexpectedly being deployed (again) and he needs my help with pet care. It involves things that won’t be easy, but I’m there for him. Thank you for reminding me of my value.
I am so sorry, Sandy. This sounds like quite a commitment. How generous of you to step forward and offer your support. I am sure this is bringing enormous relief to your son at this time. I hope there is unexpected joy awaiting you as you take on this role.
Rachel, the shift you made from looking at this horrific experience through the lens of loss and mourning to one of seeing the courage in your daughter to overcome what happened to her is incredible. I know it took a long time to get here for you. I hope one day if anything horrific happens to me or a loved one, I can remember what you wrote here.
Gosh, Tom. Reading your words made me feel strong, which is something I have never associated with that period of my life. What a gift to see myself though YOUR lens today. I am deeply grateful for the gift of your time, attention, and encouragement.
My heart goes out to you and your daughter. Our sixteen year old was born with two rare syndromes. Kai has endured so much medical trauma in those sixteen short years. Then, three years ago, Kai was sexually assaulted by a friend’s father, which led to so much more suffering. Today I carry so much guilt for it all. Could I have prevented the birth defects? Could we have prevented the assaults? Kai now not only has to deal with all the medical issues, medical trauma, ADHD, ASD, SPD, bipolar disorder, anxiety, depression and all it entails; but, also, the trauma based DID, cutting, suicidal ideation, body dysphoria and gender dysphoria. As parents, seeing your child suffer from birth to save their life is terrible and traumatic. Seeing them suffer at the hands of others just for gratification is horrific, bringing about a rage I never knew I could feel. I’m trying so hard to help our child heal, and to heal my own wounds. It’s a journey I’m not sure I’ll survive some days. But, I’m trying, as is Kai.
Dear Erin, I’m deeply sorry for the pain and trauma your daughter has endured throughout her young life. I weep knowing all that she has experienced and how deeply this has affected you too. My words feel grossly inadequate but I will say thank you.. thank you for bravely sharing your feelings so this community can assure you that you are not alone. You are not alone. We are here and you are loved.
Thank you so much, Rachel. I really just want you and others to know you aren’t alone. Sometimes when you and your child go through experiences that are beyond understanding, it feels like you are so isolated and no one understands. Some people are very judgmental and make you think you are a terrible parent and don’t realize that sometimes there are no good choices, and that you can’t always protect your child from the horrors in life. I just want other parents and children to know they aren’t alone, that they have others who understand how difficult their journey is and that they aren’t walking this road alone.
Oh Rachel this reclamation is so raw and gorgeous and it gave me a glimpse back into a time when I remembered learning to hold joy and sorrow at the same time.
One daughter was so very ill in the hospital and of course so much revolved around her. It was another daughter’s high school graduation, and there was something in me that would not allow this milestone to go on without celebration. I had a friend go to the hospital and be with my girlie there and I gathered my family and planned a Huge party for my other girlie. Before the party I had my family hold hands, we circled and acknowledged someone would be missing from this celebration AND we claimed this day for my girl who was celebrating. I called a friend who came hours before the party to accompany me in holding my joy and sorrow. We chopped and cried and danced in the kitchen and made food for over 100 people who would be coming to share in my daughter’s graduation. I kept my phone handy in case the hospital called as my other girl was in between states of serious and not . Then I stepped into the joy that surrounded us that day and I was present to it all. My girl glowed and this momma learned that you can hold joy and sorrow at the same time, even in the same moment. As my girl in the hospital found healing I learned how to take back things that her catastrophic illness stole from me and my family. I re-claimed simple things like going for a 15 min walk without my phone in my hand. I learned to take back time to tend to my sweet self not with pedicures or salt scrubs but by sitting on a swing and breathing, just being became enough. To re-teach my self I was worthy of my own tender care and re-remembering how balancing on curbs, blowing bubbles and eating tangerine popsicles brought me joy. The hard and heart-aching of life does not stop but the way I speak love into them does. For I now know it’s all about the AND, both can be held and handled, our sorrows and our joys. We need the sweet spot of the joy to buoy us during our spaces of sorrow. I have learned there is room for joy always. It is the joy that allows us our greatest grace in living our hurting and heart-wrenching, it is where Hope holds us tight and tethers us to faith that somehow, someway we will find a forward.
So proud of you Rachel for fighting to find your own joy amidst the sorrow, standing beside you as we continue to transform our scars into shiny stars that serve others.
“… and there was something in me that would not allow this milestone to go on without celebration.”
As you know, my older daughter suffered mightily when her sister was in severe distress and I did not know until years after that I missed some chances to celebrate her. I was proud of her for finding the words to tell us how that felt and to apologize. We have healed so much from Natalie’s brave admission and I do things differently now. Your comment made me feel so proud of you for recognizing what needed to happen and how you asked for help in order to make it happen. Debby, I learn from you. I am inspired by you. I can be me with you. This is everything. Deep exhale.
“And I do things differently now.” Yes love we have learned from each other how to live by our book. We move from a space grounded in heart full knowing. Trusting in our sweet selves, in our knowing the way though all others may say “ don’t go there we know it is the only way for us, through, following our hearts in the process. Soul Sisters who share in handling the unholdable and yet we know deep in our bones Love Wins❤️Love wins and we continue to hold the Hope high. You help me color myself in with colors of my choosing and strokes I am deciding, thank you for companioning, it is pure gift Rachel. Breathing beside you.❤️
I’ve always wanted to sign up for your course and look forward to the treehouse talk tomorrow as well.
As I step out of the rubble of the most traumatic year of my life, I finally understand that I’m worth the investment NOW and not down the road when everyone else is looked after. This mindset is not one of ‘me first’, but rather ’me too’. From one mother to another,
may the wind blow the dust away,
the sun wrap us in warmth,
the salt water heal our wounds, and
may the path forward be intentional and meandering 💙
Wow. This beautiful self-proclamation brought me to tears. I feel such solidarity in your words and commitment. How lucky I am to navigate this spring healing journey with you! See you tomorrow night!
This speaks to me on so many levels! I want to come back to it and have a longer, closer look at those pieces! I think as parents, we do so much more than we realize and it is captured in moments like those photographs. That is where we need to focus. Thank you! We all have this so much more than we realize. We can’t protect them from everything and that actually is not the bigger plan. We all have those mountains to climb and we wouldn’t become who we are without them. You are so right when you point out all the people that are a part of the paintings and the bigger picture in general. We are all meant to be. Sending love and hugs. Parenting is hard and rewarding and you soooo have it!
"I think as parents, we do so much more than we realize and it is captured in moments like those photographs. That is where we need to focus."
YES! YES! YES! This is exactly what I needed too!!!
Wow! Did I need Rachel's words and yours today! While I listened to Rachel's piece I came across the same thinking as you. " We can't protect them from everything and that is not actually the bigger plan." My friend once told me, "We can't steal their struggle." I think as a person working through her own trauma and healing, sometimes we want to just say I don't want you to go through this, yet look at us as you say... " We have all these mountains to climb, and we wouldn't become who we are without them." We don't know what their mountains will be, but though our journey as Rachel speaks of and models we can use it to be there for them. We can be the model and the guide because we have been through it! Thanks for your beautiful words of honesty that connected with me so deeply today!
"We can't steal their struggle." Wow. I just love that perspective. It has been a hard road for me watching my daughter go through anorexia. But I feel strengthened by this, and by talking with other parents watching their children go through similar difficulties. Thank you for sharing.
What a beautifully raw and honest post. That exhibition is amazing and a real testament to the young people who are confronting the injustices and traumas in their lives.
Our family suffered a huge loss and trauma in 2013 and it has changed our family forever, shaken and cracked the very foundations of who we were/are. The guilt and blame was almost paralysing and has taken a long time to ease, but I do try to remind myself that I did the best I could at the time with what I knew and understood.
Thank you for sharing your stories with us, Rachel. They help to make us stop and reflect.
I am so sorry to know what you and your family have experienced. Your words make me wish I could reach through this screen and hug you. Thank you for working to offer yourself the grace and acceptance you are so worthy of. You make me want to continue trying as well. Hand in hand, we shall.
Wow!! I know I’m going to have to read this again. man there is so much truth, so much emotion, so much depth and so much more here. I’m so glad to know Avery is reclaiming her beautiful light and using that in such a positive way. I’m so glad you are experience some healing from the horrible trauma. I’m so thankful for your thought provoking words here and the art you shared. You were obviously so meant to be in that place at that time and experience the amazing pieces of these students’ heart. The pics of you and your girls send out so much warmth and love…reminders of times with my girls at that age. And this piece is full of other reminders for me too! Grateful for you and your words. I’ll be there with my hand in yours tonight!💗
Thank you, love. Treasuring your words today.
Hi Rachel,
First - what time is the zoom meet up tomorrow? I would like to be there.
Second, your quote "let's not forget those who were present in their pain" convicted me today. I thought about how so few of us really do that and what a treasure it is to find those who do.
One of the things I'm trying to work on is self forgiveness at all the ways I believe I have "failed" my children. When I was severely depressed, I knew it affected them. I knew it hurt them deeply. I knew it when I was suffering through it and I hated myself at the time for my inability to be emotionally available to them.
Sometimes I feel like I know too much about child development and attachment theory and trauma, based on my education in counseling.
But in reading what you wrote today, I realized that you're right - it truly is futile for me to blame myself for everything that happens to my kids. When something is my fault, I can repair and reconnect with them, which I am learning to do. But not everything is within my control to prevent.
That, to me, is one of the greatest heartaches I have as a mom - that I can't prevent my kids from experiencing betrayal and rejection and even possibly trauma. I can only be a safe landing place for them when hurts happen.
Hi Jeannie! The Zoom gathering is at 8pm Eastern tonight! I would so love if you could be there (even part of it would be a treat for me!)
Thank you for sharing how my words brought some comfort to your own experience with parental blame. It helped me so much to read your vulnerable third paragraph. I have had my own periods of depression when I was unavailable to my children - but in reading your words, I felt compassion for you, which in turn, became more compassion for my past self who was just trying her best to make it to the next day. Thank you for this.
Jeannie, I know your life is full and you could be doing so many wonderful things with your time and energy - but the fact you choose to spend them here with me is everything. These exchanges we share in this loving space fuel me. Writing into a void is hard. Thank you for never letting me feel like I am alone.
Rachel, I can make it at 8 PM tonight! I might be slightly late, as Felicity and I are getting a haircut at 6:30 PM and probably won't be home until 8 sharp. But I can hop on after that.
Just so you know, this is a reciprocal feeling you described in your response. I can't articulate exactly what it's like to be a writer in Fort Wayne, Indiana - with no other writers in my community, no writers guild or group here that I have been able to plug into (one exists but is not very active) - and try to live a creative life without support. To be sharing this space with you fuels my creative energy. It buoys my drooping spirit. Hearing that what I share with you from the heart does the same for you truly fills me with joy.
I concur with what you said about extending compassion for another person and then realizing that you have been that person, or that you can relate to their struggles - and after you realize that, you give yourself the compassion you didn't at the time of your darkness.
What a gift for us to be able to do that for each other! I am so grateful to have found you and connect with you, especially on Substack.
See you tonight.
Jeannie - I feel so much kinship with your words. I’m struggling with my own depression caused by the stress of our child enduring continuous medical trauma from birth and SA trauma from experiences three years ago. At nearly seventeen, Kai is slowly healing, but I also realize the medical trauma will be compounded throughout life due to medical issues. I’m hoping the coping skills Kai is learning will help mitigate it, though. I have felt so much guilt throughout Kai’s life wondering if I could have prevented the health issues, the sexual abuse. My head says I can’t protect Kai from everything, my heart says I should as Kai’s mother. It’s hard to find the balance between the reality of not being able to keep harm from your children despite all you do, and doing everything you can to protect them. All I can do is be there, teach Kai and Rylan (our other child, one by heart we’ve informally adopted) to protect themselves, to cope with the hard situations in life, and to always be a safe place to come to for love, support and advice as needed. I’m keeping you in my thoughts and prayers. It sounds like you are an incredible mama who is human, but a good one. 💜
Erin, thank you so much for sharing this. All of it. It's a lot. What our children suffer, we suffer in the heart. I think that's only natural, given the stakes of loving another human. What you said here, about being present to your kids and guiding them through the hardships they have faced and will face, that's the key. That's the point, I think, of love.
For some reason, many of us have learned differently: that being a good parent means raising humans who are "normal" (whatever that means), don't have any real issues or problems, and seem well adjusted, successful, happy, etc. The reality is that everyone is touched by loss and suffering. No one can escape it. So what do we do with that?
I thought a lot about that after our daughter, Sarah, was born 11 years ago. We didn't know when I was pregnant with her, but she has a rare genetic condition called Apert syndrome that affects the development of the skull, face, fingers, and toes (primarily). So we knew right away that Sarah would look different, that she would likely deal with comments and stares from people who don't understand how to love a person who isn't like them.
That's when I realized that my role as a mom wasn't to protect my children from pain. It was to guide them through it somehow, to accompany them, to listen, to walk and journey whatever they walked and journeyed. That's hard. It's much easier to try to insulate ourselves and our families from the very real struggles that people face than to say, together, "Hey, we're not alone. We are here for each other, no matter what."
I think this also has a lot to do with letting go of what we can't control, which is most of life, anyway. Just admitting that most of what our kids go through is beyond what we can manage or prevent. We can teach them good skills about how to be discerning in relationships, how to set and maintain emotional and physical boundaries to navigate this world safely, how to grow when mistakes happen, how to repair relationships when misunderstandings occur. But we can't predict or prevent those things from happening, and that is terrifying to a parent.
So, in my experience, we lean in. We yield to whatever life brings us, and we cope with honesty, forgiveness, and compassion. If my kids grow up to be kind and compassionate humans, then I will feel I have done my job well.
Peace, hugs, and prayers to you, as well.
Jeannie - thank you for the beautiful, kind response. Kai was born with two rare syndromes and has undergone many surgeries and procedures. Kai was born Caylen (she/her) but came out as transgender after the sexual assaults. Kai said it’s safer to be male than female. However, that may be slowly changing. But, I’m still here to love and support my child regardless. Kai developed a trauma based alter system (rare form of DID) which most people don’t in. Kai also lost most of his teeth due to years of antibiotics which destroyed them. The amount of ridicule Kai has received has been just awful. We’re working on getting dentures and eventually implants for Kai. But, insurance doesn’t cover it. I know how people can be so cruel about someone who looks different. Also, about kids who they don’t see as “normal”. I’m sure your sweet Sarah has dealt with more than Kai, which hurts my heart. I’m so glad she has you and that you are the beautiful, strong mama that you are!
Hi Erin,
Thanks for what you shared. It breaks my heart to hear what you and Kai have been through. I agree - it is incredibly cruel to witness and be affected by the reactions of people who don't understand how to be human, how to be kind.
Before I continue, I want to say that it's important for each of us to acknowledge that what we experience isn't necessarily more or less than someone else. What you and your family and Kai have been through is painful, very much so. I wouldn't say that what Sarah has endured is worse, especially since she is still very young and hasn't yet thought about identity in a broader sense as Kai has. What Sarah has been through is hard, and what Kai has been through is also hard.
I guess I just feel like hard is hard, no matter what shapes or forms it takes. And we all have our own definition of what is hard. That's why it matters to me to be able to come together with others who are brave enough to share their hard (like you) and say, hey, we're together. I can be strong for you when you can't find strength for yourself. I can speak kindness and compassion to you when you are burnt out and weary.
That's truly all I've wanted to do with the work I do in writing and speaking.
There's so much to unravel with Kai's life: his appearance due to loss of teeth, the psychological DID diagnosis, the trauma healing, and yes, the insurance battles. (Dental insurance is the WORST for coverage - we know this well with Sarah's teeth. I'm sorry you are dealing with this.)
Above all, Erin, you are loving Kai through it. That's what will bring him healing. No matter what else transpires in his life, it's your love that is shining a light, acting as a beacon so that he knows he is safe, knows he is accepted and loved no matter who he is or what has happened to him. You are his healing hope.
As I reflected on your question/prompt at the end...I actually had the first thought of "Yes, myself." I have been there for myself through this journey. I show up for myself every day and choose to then show up for others. I choose to take my experiences to now turn them into productivity with my writing and photography, and hopefully more with some ideas of bringing people together in community. I feel like this journey has taught me that art, creativity is the best expression for what we are feeling because it is there for others to see and maybe feel a little too. I have an idea to bring young people together to do just that, express themselves with freedom of what is really showing up for them, and truly listen not judge. Our kids have powerful stories to tell and they tell it through honesty. I probably could have spent a whole afternoon with you in front of those billboards. So powerful! I saved them in my brave/inspiration notes on my phone!
I wish you’d been there with me, Cory! You would have appreciated the messages and helped me see more beautiful details I probably missed. You are a gift.
Although I'm not a mother yet, this story resonates, I feel your pain and have seen it in my own lovely amazing mother. It's one of the biggest fears I have for becoming a mother myself, knowing you will never be without worries because of the deep love for your children, knowing bad things will happen, moments of deep pain and sorrow. But that is part of life, and I'm sure the love you get in return is something incomparable.
Your daughter sounds like a fierce and strong person, and with that level of support, she must feel the same about you.
This is the first time I read your work Rachel, but I will definitely read more.
I’m so deeply touched by your beautiful comment, Maria. I have come to believe our most precious commodity is our attention. You gave me this gift and even took it a step further to leave an imprint of goodness that will forever remain. Holding it tenderly. Thank you.
Thank you for sharing that artwork and your experience. Someone shared a quote with me recently - something along the line of “don’t let the disappointments of yesterday stop you from the possibilities of tomorrow.” Also, as a parent of a young adult I find the challenge is always there to keep close or let go.
That’s a powerful quote, Ginger. Thank you for taking time to share it and let us know that you are right here with us.
Such a timely post! Going through a tough year with our youngest this year.
That picture of the three of you looks like the shape of a HEART ❤️
What a beautiful treasure.
I’m so sorry Avery has had such a hard time. I hope things continue to get easier for her. 🙏🏻
Oh my gosh! You're right about the heart shape we make in the last picture!!!! This is so special. Thank you, Donna. Please know I am holding you, your youngest child, and your whole family close to my heart as you navigate a difficult year with love, patience, strength, and hope. You are all of those things and more.
Thank you so much. We will get through it. We have survived much worse. xo
Last night I received some disappointing news from my son — he is unexpectedly being deployed (again) and he needs my help with pet care. It involves things that won’t be easy, but I’m there for him. Thank you for reminding me of my value.
I am so sorry, Sandy. This sounds like quite a commitment. How generous of you to step forward and offer your support. I am sure this is bringing enormous relief to your son at this time. I hope there is unexpected joy awaiting you as you take on this role.
Thank you for sharing this, Rachel. It means more to me than you know at this time.
Thank you, Elizabeth. My hand in yours.
Rachel, the shift you made from looking at this horrific experience through the lens of loss and mourning to one of seeing the courage in your daughter to overcome what happened to her is incredible. I know it took a long time to get here for you. I hope one day if anything horrific happens to me or a loved one, I can remember what you wrote here.
Gosh, Tom. Reading your words made me feel strong, which is something I have never associated with that period of my life. What a gift to see myself though YOUR lens today. I am deeply grateful for the gift of your time, attention, and encouragement.
My heart goes out to you and your daughter. Our sixteen year old was born with two rare syndromes. Kai has endured so much medical trauma in those sixteen short years. Then, three years ago, Kai was sexually assaulted by a friend’s father, which led to so much more suffering. Today I carry so much guilt for it all. Could I have prevented the birth defects? Could we have prevented the assaults? Kai now not only has to deal with all the medical issues, medical trauma, ADHD, ASD, SPD, bipolar disorder, anxiety, depression and all it entails; but, also, the trauma based DID, cutting, suicidal ideation, body dysphoria and gender dysphoria. As parents, seeing your child suffer from birth to save their life is terrible and traumatic. Seeing them suffer at the hands of others just for gratification is horrific, bringing about a rage I never knew I could feel. I’m trying so hard to help our child heal, and to heal my own wounds. It’s a journey I’m not sure I’ll survive some days. But, I’m trying, as is Kai.
Dear Erin, I’m deeply sorry for the pain and trauma your daughter has endured throughout her young life. I weep knowing all that she has experienced and how deeply this has affected you too. My words feel grossly inadequate but I will say thank you.. thank you for bravely sharing your feelings so this community can assure you that you are not alone. You are not alone. We are here and you are loved.
Thank you so much, Rachel. I really just want you and others to know you aren’t alone. Sometimes when you and your child go through experiences that are beyond understanding, it feels like you are so isolated and no one understands. Some people are very judgmental and make you think you are a terrible parent and don’t realize that sometimes there are no good choices, and that you can’t always protect your child from the horrors in life. I just want other parents and children to know they aren’t alone, that they have others who understand how difficult their journey is and that they aren’t walking this road alone.
🤝❤️ thank you with my whole heart
Wow! Their art, and you’re art- so impactful!
Autocorrect- Dangit! YOUR ART!
I should be able to be there !!
This makes me SOOO HAPPY! Can't wait to see you tonight!
Oh Rachel this reclamation is so raw and gorgeous and it gave me a glimpse back into a time when I remembered learning to hold joy and sorrow at the same time.
One daughter was so very ill in the hospital and of course so much revolved around her. It was another daughter’s high school graduation, and there was something in me that would not allow this milestone to go on without celebration. I had a friend go to the hospital and be with my girlie there and I gathered my family and planned a Huge party for my other girlie. Before the party I had my family hold hands, we circled and acknowledged someone would be missing from this celebration AND we claimed this day for my girl who was celebrating. I called a friend who came hours before the party to accompany me in holding my joy and sorrow. We chopped and cried and danced in the kitchen and made food for over 100 people who would be coming to share in my daughter’s graduation. I kept my phone handy in case the hospital called as my other girl was in between states of serious and not . Then I stepped into the joy that surrounded us that day and I was present to it all. My girl glowed and this momma learned that you can hold joy and sorrow at the same time, even in the same moment. As my girl in the hospital found healing I learned how to take back things that her catastrophic illness stole from me and my family. I re-claimed simple things like going for a 15 min walk without my phone in my hand. I learned to take back time to tend to my sweet self not with pedicures or salt scrubs but by sitting on a swing and breathing, just being became enough. To re-teach my self I was worthy of my own tender care and re-remembering how balancing on curbs, blowing bubbles and eating tangerine popsicles brought me joy. The hard and heart-aching of life does not stop but the way I speak love into them does. For I now know it’s all about the AND, both can be held and handled, our sorrows and our joys. We need the sweet spot of the joy to buoy us during our spaces of sorrow. I have learned there is room for joy always. It is the joy that allows us our greatest grace in living our hurting and heart-wrenching, it is where Hope holds us tight and tethers us to faith that somehow, someway we will find a forward.
So proud of you Rachel for fighting to find your own joy amidst the sorrow, standing beside you as we continue to transform our scars into shiny stars that serve others.
“… and there was something in me that would not allow this milestone to go on without celebration.”
As you know, my older daughter suffered mightily when her sister was in severe distress and I did not know until years after that I missed some chances to celebrate her. I was proud of her for finding the words to tell us how that felt and to apologize. We have healed so much from Natalie’s brave admission and I do things differently now. Your comment made me feel so proud of you for recognizing what needed to happen and how you asked for help in order to make it happen. Debby, I learn from you. I am inspired by you. I can be me with you. This is everything. Deep exhale.
“And I do things differently now.” Yes love we have learned from each other how to live by our book. We move from a space grounded in heart full knowing. Trusting in our sweet selves, in our knowing the way though all others may say “ don’t go there we know it is the only way for us, through, following our hearts in the process. Soul Sisters who share in handling the unholdable and yet we know deep in our bones Love Wins❤️Love wins and we continue to hold the Hope high. You help me color myself in with colors of my choosing and strokes I am deciding, thank you for companioning, it is pure gift Rachel. Breathing beside you.❤️