thanks for writing about grief and being open about an ongoing pain of loving a child with disability, I was wondering where your weekly's had gone and glad to see a piece by you again :) I think this is a really brave piece
Wowzers. I’ve been in the feels lately myself for different reasons and reading this was a gut punch this morning. My friend—thank you for the most intimate share of words. Em may not be able to express those words but you expressed for her powerfully. ❤️
This sentence raised some thoughts as well. You say:
“This is something people don’t talk about having a kid with a disability: you often don’t have the time or capacity to really feel things because you’re in survival mode almost constantly.”
It made me think of the world we live in—certainly since Covid—but all the other crazy too. We are constantly in survival mode. It reflects in the spikes in our collective mental illness and self-medication. Who can have deep thoughts our feelings about how we’re treating ourselves and others when we’re always on guard and defending. 🤷🏻♂️
Totally agree that many of us have been in survival mode for far too long. The main difference I've noticed is that a lot of people are opting into it and can opt out whenever they want to. Usually it's because something comes to a head and they're at their breaking point or they start ruining relationships or any other number of other catalysts. The point is that they can—maybe not easily, but they can—choose to engage with the world differently. But parents of kids with a disability often don't have a choice in the matter. They need to be on high alert almost constantly or their child might suffer (and in extreme cases they might die). It's hard to sit with this fact and even harder for those parents to express it to others since they usually don't get what they need from the response they receive.
'...the universe’s way of punishing me for something else I did...'
I feel that it's not healthy for us to think in this particular way in general. We shouldn't try to justify incidents and tragedies in our lives like this.
More power to you for all your efforts thus far, Lyle. Hope things work out better for your daughter.
Hearing. you read this at the Closing Ceremony was so powerful. And I do mean power - it took tremendous power to write so honestly, so bravely. Thank you for sharing it and for helping us understand your world.
As I often say, if we can be a witness for you, I hope it helps, even if it’s just a tiny fraction of a fraction of alleviation from the constant grief-soaked vigilance you endure each day. You are in a safe space to share, any time. As the quote goes: it’s not the cards you’re dealt but how you play the hand. Never punish yourself if you can’t win this round. You’re doing the best you can with the cards you got. A bad day, hour, or moment can’t take away from the fact that you’re an amazing dad ❤️
I love your honesty, Lyle. This piece invites us to sit with you and feel what it’s like to be in your shoes. It’s so poignant. I know joy and beauty are also ever-present in your life with Em because of other pieces you’ve written, and I admire that you’re also willing to share your loss and sadness. I also love the seamless way you slipped in a promo for Foster Foundations, and your ending is great!
It is so good to hear from you (or read you). I know how hard writing this must have been. As I read, I kept feeling that echo of grief and then you just put it out there. Talking about grief is difficult and I am struck by that because it is so universal. I've found that grieving has reduced my brain capacity in exactly the way Cave describes and that you have felt. I sometimes wonder if/when I will feel the fog recede. I have faith that it will even though I know the pain of loss will sort of ebb and flow for the rest of my life.
Your losses are ones that cut deep. And while I know you have also felt much joy in your journey with Em, It's not surprising that you are grieving and it's not surprising that you have struggled to put it down. Our language has the words but we lack some essential ingredient in our current society that allows us to feel comfortable expressing it or others to feel comfortable hearing it. It might be because the pain of another's loss only reminds us of what we have lost or will lose. Here is what I think is the best thing -- exactly what you've been doing for years now on the page. If I were to meet you in person, and I hadn't read any of your work, I would like to say, "Tell me about Em. Tell me a story." There are no words I can say, but I can listen and take in the joy and light and sorrow that flash across your face as you tell me about this girl you love and the life she has shaped for you. I know I would walk away richer and it would not require anything of me but an ear.
When people express sympathy to me over the death of my brother, my most recent loss, I just nod and feel all the feelings roiling around inside me. I feel their caring but also their helplessness and hesitation. I think if someone said, "tell me about him" or "tell me a story about you both" that would allow me to connect with them and my own grief so much more easily and it would be easier on them too. They might not feel so awkward. There is no prescription for getting through it faster or easier. In fact, there is no leaving it behind. There is only learning to live with all the heaviness and the lightness and it is so much easier if we can just, every once in a while, talk and listen without trying to fix.
I know I've written too much above and too much about myself. I guess your words found me on a day when I was thinking about some of these things. In sharing your experience you've given a gift. I wish you respite, peace, restoration. I thank you.
"If I were to meet you in person, and I hadn't read any of your work, I would like to say, 'Tell me about Em. Tell me a story.' There are no words I can say, but I can listen and take in the joy and light and sorrow that flash across your face as you tell me about this girl you love and the life she has shaped for you. I know I would walk away richer and it would not require anything of me but an ear."
It's great advice and something I wasn't very good at for most of my life.
thanks for writing about grief and being open about an ongoing pain of loving a child with disability, I was wondering where your weekly's had gone and glad to see a piece by you again :) I think this is a really brave piece
Thank you! ❤️
Wowzers. I’ve been in the feels lately myself for different reasons and reading this was a gut punch this morning. My friend—thank you for the most intimate share of words. Em may not be able to express those words but you expressed for her powerfully. ❤️
This sentence raised some thoughts as well. You say:
“This is something people don’t talk about having a kid with a disability: you often don’t have the time or capacity to really feel things because you’re in survival mode almost constantly.”
It made me think of the world we live in—certainly since Covid—but all the other crazy too. We are constantly in survival mode. It reflects in the spikes in our collective mental illness and self-medication. Who can have deep thoughts our feelings about how we’re treating ourselves and others when we’re always on guard and defending. 🤷🏻♂️
Love ya Lyle.
Totally agree that many of us have been in survival mode for far too long. The main difference I've noticed is that a lot of people are opting into it and can opt out whenever they want to. Usually it's because something comes to a head and they're at their breaking point or they start ruining relationships or any other number of other catalysts. The point is that they can—maybe not easily, but they can—choose to engage with the world differently. But parents of kids with a disability often don't have a choice in the matter. They need to be on high alert almost constantly or their child might suffer (and in extreme cases they might die). It's hard to sit with this fact and even harder for those parents to express it to others since they usually don't get what they need from the response they receive.
God bless Em and Allison and you.
❤️
'...the universe’s way of punishing me for something else I did...'
I feel that it's not healthy for us to think in this particular way in general. We shouldn't try to justify incidents and tragedies in our lives like this.
More power to you for all your efforts thus far, Lyle. Hope things work out better for your daughter.
Yes, I'm glad I don't go there, but I know some people do and that makes their situation even more difficult to deal with.
Thank you, Raveen!
Thank you Lyle, I hope your writing gives you more and more positivity as you provide us with exactly that. Happy Father's Day to an incredible Dad.
Thank you, Chandler! Hope we get to hit the course soon here
Thank you for this.
Thank you for reading, Ben!
Hearing. you read this at the Closing Ceremony was so powerful. And I do mean power - it took tremendous power to write so honestly, so bravely. Thank you for sharing it and for helping us understand your world.
Thank you, Jude ❤️
As I often say, if we can be a witness for you, I hope it helps, even if it’s just a tiny fraction of a fraction of alleviation from the constant grief-soaked vigilance you endure each day. You are in a safe space to share, any time. As the quote goes: it’s not the cards you’re dealt but how you play the hand. Never punish yourself if you can’t win this round. You’re doing the best you can with the cards you got. A bad day, hour, or moment can’t take away from the fact that you’re an amazing dad ❤️
Thank you so much for the heartfelt comment. I needed that today ❤️
I love your honesty, Lyle. This piece invites us to sit with you and feel what it’s like to be in your shoes. It’s so poignant. I know joy and beauty are also ever-present in your life with Em because of other pieces you’ve written, and I admire that you’re also willing to share your loss and sadness. I also love the seamless way you slipped in a promo for Foster Foundations, and your ending is great!
Thank you so much, Marian! And thank you for witnessing me read it aloud at the Closing Ceremony earlier today ❤️
It is so good to hear from you (or read you). I know how hard writing this must have been. As I read, I kept feeling that echo of grief and then you just put it out there. Talking about grief is difficult and I am struck by that because it is so universal. I've found that grieving has reduced my brain capacity in exactly the way Cave describes and that you have felt. I sometimes wonder if/when I will feel the fog recede. I have faith that it will even though I know the pain of loss will sort of ebb and flow for the rest of my life.
Your losses are ones that cut deep. And while I know you have also felt much joy in your journey with Em, It's not surprising that you are grieving and it's not surprising that you have struggled to put it down. Our language has the words but we lack some essential ingredient in our current society that allows us to feel comfortable expressing it or others to feel comfortable hearing it. It might be because the pain of another's loss only reminds us of what we have lost or will lose. Here is what I think is the best thing -- exactly what you've been doing for years now on the page. If I were to meet you in person, and I hadn't read any of your work, I would like to say, "Tell me about Em. Tell me a story." There are no words I can say, but I can listen and take in the joy and light and sorrow that flash across your face as you tell me about this girl you love and the life she has shaped for you. I know I would walk away richer and it would not require anything of me but an ear.
When people express sympathy to me over the death of my brother, my most recent loss, I just nod and feel all the feelings roiling around inside me. I feel their caring but also their helplessness and hesitation. I think if someone said, "tell me about him" or "tell me a story about you both" that would allow me to connect with them and my own grief so much more easily and it would be easier on them too. They might not feel so awkward. There is no prescription for getting through it faster or easier. In fact, there is no leaving it behind. There is only learning to live with all the heaviness and the lightness and it is so much easier if we can just, every once in a while, talk and listen without trying to fix.
I know I've written too much above and too much about myself. I guess your words found me on a day when I was thinking about some of these things. In sharing your experience you've given a gift. I wish you respite, peace, restoration. I thank you.
Thank you so much, Betty!
I love this:
"If I were to meet you in person, and I hadn't read any of your work, I would like to say, 'Tell me about Em. Tell me a story.' There are no words I can say, but I can listen and take in the joy and light and sorrow that flash across your face as you tell me about this girl you love and the life she has shaped for you. I know I would walk away richer and it would not require anything of me but an ear."
It's great advice and something I wasn't very good at for most of my life.