I am (or maybe more accurately was) what is known in modern parlance as a ‘glass child.’ For anyone not familiar with the term, it means the sibling of a child with chronic illness/disability, made popular in a TED talk by Alicia Maples in 2011.
I think it’s a beautiful thing that you can share that you’re scared. I was a young carer to my mum as a teen. I also became hyper independent as a result. I’m now a carer to my son who has a learning disability and part of what I’ve always struggled with is how dependent that makes us on systems - the former young carer in me rages at this. I have a non-disabled child too and I really dislike the term ‘glass child’. It feels very judgemental and I don’t feel it reflects what it’s really like for her (plus I hate euphemisms anyway). I prefer to call her a young carer. It’s made her life very complex and far from easy. It’s a term I’ve encouraged her to use herself, to explain to people why our situation is not the same as others and why she needs more flexibility and understanding. But on the flip side - the absolute best people I know grew up with a disabled sibling ❤️
Oh, Jennie, this post made me cry, too. I'm writing this through tears, so it's just as well I can touch-type. Thank you, Mrs Gill! What a beautiful and heartfelt piece this was. I don't know what I was expecting, when I started reading it, but it wasn't what I got. You're refreshingly honest and it touches with a lot of us, even if we don't have the same background and lives. Susan sounds like a gorgeous person - her sense of fun came through in your descriptions of her. I love that she hides her crayons from her carers and takes great delight in that! I have never of the expression "glass child" before, but it's struck such a chord with me. It's helping me to view things from someone else's perspective. I'm the youngest of six, so I've been largely shielded from a lot of life's harder stages, including with my family. It was my eldest brother, for instance, who was responsible for organising my dad's funeral ten years ago. My role in proceedings was minimal. And even back then I remember how much my oldest brother did for us even when he was a child himself - including getting us all registered at school, since neither of my parents spoke English at the time. So I am sending you - and him - as much love and virtual support as I can. There are tough years ahead for all of us, but we can all take some comfort in knowing that we are not alone. Thank you for showing us a part of your world that I didn't know about, and for letting us get to know Susan even a little bit. She is very special, as are you. Iqbal X
This is so beautiful, Jennie. And Susan sounds wonderful - I chuckled at her hiding her crayons. My kind of women. I often think that the price we pay for loving with our whole heart is that we carry the weight of that love. The responsibility and uncertainty and the desire to keep that person protected and shielded - and that is scary stuff. Particularly when you are in a position when to do this is less than straightforward. I send you love and courage. xx
Oh ‘the price we pay for living with our whole heart is that we carry the weight of that love’ hit me RIGHT in the feelings. Thank you gorgeous woman x
This is beautiful Jennie, and Susan sounds brilliant. I can’t pretend to know how it feels to be in your place, but it’s a privilege to access those feelings through your writing ❤️
Goodness, I had no idea. Obviously I wouldn’t. Susan is not what you were talking about on the writing retreat we shared. What an incredible post, a humbling message for those reading. For me.
I know a little about being a carer as the last three years I’ve helped get my uncle the care he needed and then last year, moved into a Care Home as his epilepsy left him falling frequently and living alone was no longer an option. I continue to take him to hospital appointments and visit him weekly and watch his dementia steal him away bit by bit.
BUT…
He is not my sister. I did not grow up living with him. (In fact, he scared me a little when I was young, god knows why. I thought it weird he lived with his parents when he was 40, and never married, but then the thoughts of an eight year old don’t always come from a place of sense do they)
My heart goes out to you. Day by day is THE only way to get through, and being able to share your thoughts along the way must help a little bit? xxx
I have a few friends who have two children, one of whom has a long term disability. I'd never heard of the term 'glass child' before. I can imagine how overwhelming it must be to know you'll be responsible for her one day but it sounds like you've got it. Like anything that feels insurmountable, it helps to just focus on one step at a time.
This is so beautifully written. I wouldn’t expect anything else. It so honest. I understand how these terms can be so upsetting. Someone says something and all of a sudden that becomes the term used, without any thought about situations, no size fits all and the impact on the child.
I can understand the fear you have. You clearly have a loving and close relationship between you, that is the most important thing ❤️❤️❤️
This is so beautiful Jenny, your honesty is heart aching and I can imagine how scared you feel, it is a big responsibility. I hope with the responsibility it gives you lots of joy too, as Susan sounds so loving and fun. X
Such a beautiful, poignant post, Jennie. Thank you for telling us all about your gorgeous sister… she sounds great! And your honesty is always precious.
There is a glass child in my extended family, and I’m always wondering about their emotional and psychological landscape. Even though their sibling is currently well, there seems to be an ongoing imbalance within the family dynamic which has concerned me for years. But we are geographically distanced, and it’s not my place to intervene.
I’m also reminded of a woman I used to know, who was set to inherit a considerable fortune, but also the responsibility for her sibling, who was unable to live independently. Interestingly, she viewed the money as a burden that would need to be carefully managed, although she wouldn’t need to worry about finances in relation to her sibling. It was a complex and difficult situation nevertheless, and her feelings around it all were quite tangled.
The search for (as opposed to the finding of) the arc makes sense, because that’s how (we) writers find and make meaning… The Jungian psychotherapist in me sees The Glass Child as an archetypal image and your experience is the story. Again, thank you for sharing…
Bold, open and truly beautiful while also brave and pragmatic.
I love your midas touch - turning every problem into a fact - making the best of it. And your sister has always been a legend in my blended/de-blended/re-mixed family's life - as have you.
The paperwork is the worst of life in all forms of need. Disability living allowance claims, Pips and all the associated shite exhaust all who care. Insane interventions made by teams working under worthy titles like 'dignity for life' who are governed purely by tick-box spreadsheets on-line and 'intervene - just running a spot check' made a near murderer of me while my mum woke up to a reasonably content groundhog day under my and my children's care.
The best and equally the worst is that you really can't know what will be tomorrow - and that makes today much less of a box of frogs.
Sending love. And if ever you want to scream and shout, cry or kill an administrator, ring me up.
There’s such a beautiful vulnerability in this post. Susan and you are blessed to have each other, and I know that whatever you need to support her is in you, even if you don’t know what it is yet. Your fierce love for her shines through and maybe that is enough.
I think it’s a beautiful thing that you can share that you’re scared. I was a young carer to my mum as a teen. I also became hyper independent as a result. I’m now a carer to my son who has a learning disability and part of what I’ve always struggled with is how dependent that makes us on systems - the former young carer in me rages at this. I have a non-disabled child too and I really dislike the term ‘glass child’. It feels very judgemental and I don’t feel it reflects what it’s really like for her (plus I hate euphemisms anyway). I prefer to call her a young carer. It’s made her life very complex and far from easy. It’s a term I’ve encouraged her to use herself, to explain to people why our situation is not the same as others and why she needs more flexibility and understanding. But on the flip side - the absolute best people I know grew up with a disabled sibling ❤️
Oh thank you so much for your kindness and for sharing this Penny. That is A LOT of caring responsibility.
I didn’t talk about the rage, I have felt that too, but more so my mum I think, and I know I have more of that ahead of me.
But I agree about ‘the best people’ (even if that puts me in that category!) as my goodness do you learn compassion and acceptance.
Oh, Jennie, this post made me cry, too. I'm writing this through tears, so it's just as well I can touch-type. Thank you, Mrs Gill! What a beautiful and heartfelt piece this was. I don't know what I was expecting, when I started reading it, but it wasn't what I got. You're refreshingly honest and it touches with a lot of us, even if we don't have the same background and lives. Susan sounds like a gorgeous person - her sense of fun came through in your descriptions of her. I love that she hides her crayons from her carers and takes great delight in that! I have never of the expression "glass child" before, but it's struck such a chord with me. It's helping me to view things from someone else's perspective. I'm the youngest of six, so I've been largely shielded from a lot of life's harder stages, including with my family. It was my eldest brother, for instance, who was responsible for organising my dad's funeral ten years ago. My role in proceedings was minimal. And even back then I remember how much my oldest brother did for us even when he was a child himself - including getting us all registered at school, since neither of my parents spoke English at the time. So I am sending you - and him - as much love and virtual support as I can. There are tough years ahead for all of us, but we can all take some comfort in knowing that we are not alone. Thank you for showing us a part of your world that I didn't know about, and for letting us get to know Susan even a little bit. She is very special, as are you. Iqbal X
Oh Iqbal, I cried while I was writing it and now I am crying at your BEAUTIFUL and heartfelt response. Thank you, thank you, so much 🙏
Such a vulnerable post, thank you for sharing your experience.
I noticed your comment- ‘it’s all about susan’.
It is of course about susan, and what she needs, and it’s also about seeing you and your needs too.
Not either-or, but both-and.
Much love xx
Thank you Jo, I do need to remember that x
This is so beautiful, Jennie. And Susan sounds wonderful - I chuckled at her hiding her crayons. My kind of women. I often think that the price we pay for loving with our whole heart is that we carry the weight of that love. The responsibility and uncertainty and the desire to keep that person protected and shielded - and that is scary stuff. Particularly when you are in a position when to do this is less than straightforward. I send you love and courage. xx
Oh ‘the price we pay for living with our whole heart is that we carry the weight of that love’ hit me RIGHT in the feelings. Thank you gorgeous woman x
What a beautiful piece. Sending both of you love.
😍 thank you Alison xx
This post made me cry, I‘m still crying. Thank you for sharing this. You sister sounds wonderful and you do too. Xx
Oh thank you so much Susan. I dunno about me, but Susan definitely is 😊 x
This is beautiful Jennie, and Susan sounds brilliant. I can’t pretend to know how it feels to be in your place, but it’s a privilege to access those feelings through your writing ❤️
❤️
Goodness, I had no idea. Obviously I wouldn’t. Susan is not what you were talking about on the writing retreat we shared. What an incredible post, a humbling message for those reading. For me.
I know a little about being a carer as the last three years I’ve helped get my uncle the care he needed and then last year, moved into a Care Home as his epilepsy left him falling frequently and living alone was no longer an option. I continue to take him to hospital appointments and visit him weekly and watch his dementia steal him away bit by bit.
BUT…
He is not my sister. I did not grow up living with him. (In fact, he scared me a little when I was young, god knows why. I thought it weird he lived with his parents when he was 40, and never married, but then the thoughts of an eight year old don’t always come from a place of sense do they)
My heart goes out to you. Day by day is THE only way to get through, and being able to share your thoughts along the way must help a little bit? xxx
Thank you lovely Kate x
I have a few friends who have two children, one of whom has a long term disability. I'd never heard of the term 'glass child' before. I can imagine how overwhelming it must be to know you'll be responsible for her one day but it sounds like you've got it. Like anything that feels insurmountable, it helps to just focus on one step at a time.
This is so beautifully written. I wouldn’t expect anything else. It so honest. I understand how these terms can be so upsetting. Someone says something and all of a sudden that becomes the term used, without any thought about situations, no size fits all and the impact on the child.
I can understand the fear you have. You clearly have a loving and close relationship between you, that is the most important thing ❤️❤️❤️
Thanks so much Jo
This is so beautiful Jenny, your honesty is heart aching and I can imagine how scared you feel, it is a big responsibility. I hope with the responsibility it gives you lots of joy too, as Susan sounds so loving and fun. X
Such a beautiful, poignant post, Jennie. Thank you for telling us all about your gorgeous sister… she sounds great! And your honesty is always precious.
There is a glass child in my extended family, and I’m always wondering about their emotional and psychological landscape. Even though their sibling is currently well, there seems to be an ongoing imbalance within the family dynamic which has concerned me for years. But we are geographically distanced, and it’s not my place to intervene.
I’m also reminded of a woman I used to know, who was set to inherit a considerable fortune, but also the responsibility for her sibling, who was unable to live independently. Interestingly, she viewed the money as a burden that would need to be carefully managed, although she wouldn’t need to worry about finances in relation to her sibling. It was a complex and difficult situation nevertheless, and her feelings around it all were quite tangled.
The search for (as opposed to the finding of) the arc makes sense, because that’s how (we) writers find and make meaning… The Jungian psychotherapist in me sees The Glass Child as an archetypal image and your experience is the story. Again, thank you for sharing…
✍🏻 xx
Oh thank you for such a beautiful response to this. It means a lot x
Bold, open and truly beautiful while also brave and pragmatic.
I love your midas touch - turning every problem into a fact - making the best of it. And your sister has always been a legend in my blended/de-blended/re-mixed family's life - as have you.
The paperwork is the worst of life in all forms of need. Disability living allowance claims, Pips and all the associated shite exhaust all who care. Insane interventions made by teams working under worthy titles like 'dignity for life' who are governed purely by tick-box spreadsheets on-line and 'intervene - just running a spot check' made a near murderer of me while my mum woke up to a reasonably content groundhog day under my and my children's care.
The best and equally the worst is that you really can't know what will be tomorrow - and that makes today much less of a box of frogs.
Sending love. And if ever you want to scream and shout, cry or kill an administrator, ring me up.
C xx
So much love Cherry x
So appreciate the honesty of your writing. X
Thank you so much Sue
There’s such a beautiful vulnerability in this post. Susan and you are blessed to have each other, and I know that whatever you need to support her is in you, even if you don’t know what it is yet. Your fierce love for her shines through and maybe that is enough.
Thank you for sharing x
Thank you for this Emma x
Honest and beautiful writing. Taking on responsibility for siblings is a huge task that comes with a multiplicity of emotions.