Idk how I missed this in February, but I'm sure glad you shared it with me on the Jukebox Chris! Presence over perfection 🙏 YES. For true perfection is in every moment - Amor Fati 🤍.
Thank you, Chris, for your deeply moving letter and for sharing your journey so far with Bray Bray. It moved me. Bray Bray's smile radiates loving light. It is immeasurable.❤️
The moment when defiance slowly turns into acceptance is one of the hardest and most transformative parts of the journey. Your words about grieving the life we imagined while learning to embrace the life that is here feel very true..
Thank you for sharing this. Caring for my dad with Alzheimer’s was incredibly hard, and there were times I felt like I wasn’t doing enough — even when I was giving everything I had. Some days were full of connection and pride, others of exhaustion and grief. Reading this reminds me that just showing up with love and effort is enough, even on the hardest days.
Thank you for sharing your own piece of your caregiving journey. Presence is more important than perfection, and God bless you for showing up for your Dad during that time.
Thank you for sharing Chris. Reading your story was in part a difficult read.. it resonated so much!! but it was also a little ah yes..this is why we share our stories! I am sure it was difficult to write (I’ve been there 😜) but I can feel your enlightenment and honesty about yourself and your feelings coming through. We so often plow through forgetting ourselves in the process. Well done for expressing this so beautifully.
Thank you so much Haley. I had never put the full journey together quite like this and so it was enlightening for me just to write it all out and see how far we’ve come as a family.
When we’re deep in caregiving, navigating the issue/crisis, it’s so easy to plough through without processing the impact it has on us … I guess, often, because we’re already pivoting into the next issue/crisis. Chris' words explain his mindset shift so well.
Learning how each caregiver has explained their journey to their younger self in these letters has been a real gift to us as readers. They reveal so much about us, the perfectly imperfect humans doing the caregiving!
You are a wonderful cheerleader to your younger self and to all the other caregivers. Thank you for sharing your wisdom and the magic of Bray Bray! The photos of him are great and display his light.
Wow, thank you Chris for sharing your journey. The poem at the end is so powerful. He calls you ‘Dad’ in his own way. He knows you more than you realise. He sounds like an absolute blessing to be around. May the three of you continue to enjoy the journey together, to face the challenges and soak up the beauty of each moment.
Thank you so much Sally. Bray Bray definitely has his own way of letting us know he’s with us. We are blessed with every laugh, every smile, every reach of his hands.
My heart was always with Bray Bray, but reading this…it was so heartfelt, so touching. So emotional, my heart goes with you Chris and Melanie as well. Your names are what resilience means.
Chris, as with everything you share, there is such deep emotional resonance in the purity of your voice - the raw honesty, the confessional yet tender nature with which you write. I walked with you, from Bray Bray's infancy to today, and as I did, I remembered the similar pathway we walked with Sarah. There is such rage (I think you used the word fury) with practitioners who really have no bedside manner and deliver news in such a callous, cruel way.
You asked the question, "How could a doctor so brilliantly take care of my son while so flippantly talk to me?" or some variation of that, and it really struck me as a universality I have experienced dealing with health care, both as a system but also the people within the system who are not trained to understand or sit with complexity and allow the humanity of painful moments with their patients to simply be.
That's hard. And it's also rare.
I've thought a lot about the things you write that pertain to Bray Bray and you learning a new way to communicate, outside of verbal forms. Reflecting on that, particularly with a friend of mine who is struggling with radiation-related aphasia, I told her one day that I knew someone (you, but I didn't mention you by name) who is raising a son who can't communicate verbally, yet there is a way to still convey a new type of language with the people you love. I'm not sure if I'm saying this the way I want to right now, because it feels a bit awkward the way I'm writing it.
Essentially, what I mean is this: Witnessing you with Bray Bray is teaching me that love doesn't need a spoken language, just a shared heart. And that there are times when words can tarnish what we really mean to convey to someone we love. Maybe shared space and silence matters more than verbosity. Maybe there's a deeper love at play when we learn how to understand each other beyond what we say. That's what I'm learning from you.
Victoria, this was so incredible. Thank you for sharing Chris and his voice and all the generous ways you introduce us to other caregivers!
Thanks, Jeannie. I hear you. What you describe is akin to how caregivers connect with loved ones who have dementia as well; non-verbal communication, music, and other sensory interactions with food, familiar smells, soft textiles, and touching hands, connect to- and 'speak' feelings that can connect us.
I think every long-term caregiver forms a special language with those they care for, I know I have. xo
Jeannie, I can’t thank you enough for your empathy, support, and our growing friendship. I have definitely felt that rage, and I still have that defiance in me, but also that added self-awareness and positive embracing of Bray Bray as he is.
I also agree that you can be present and show love without spoken words. There’s a reason why body language is well-researched and studied, because our actions and reactions in those silent moments matter.
Bray Bray continues to teach me how big those non-verbose moments are. In fact, they mean everything to us as we take care of him and he communicates with us in his own way.
Idk how I missed this in February, but I'm sure glad you shared it with me on the Jukebox Chris! Presence over perfection 🙏 YES. For true perfection is in every moment - Amor Fati 🤍.
Thank you MJ, “Don’t Look Back in Anger… at least not today…”
Thank you, Victoria. ❤️
Thank you, Chris, for your deeply moving letter and for sharing your journey so far with Bray Bray. It moved me. Bray Bray's smile radiates loving light. It is immeasurable.❤️
Thank you so much Jane.
Such a beautiful moving emotional (I'm in tears) tribute of pure unconditional love.💕✨️
Blessed you Chris and your family.
Thank you so much Debra!
Beautiful.
Thank you Kristin
As a caregiver myself, this resonated deeply..
The moment when defiance slowly turns into acceptance is one of the hardest and most transformative parts of the journey. Your words about grieving the life we imagined while learning to embrace the life that is here feel very true..
Thank you for sharing Bray Bray’s light with us..
Thank you so much for reading and for your empathy. It has definitely been a long road to get to this point.
Thank you everyone for reading and for such a great discussion!
Just wonderful Chris. You are such a a force!
Awww thanks Jess!
Thank you for sharing this. Caring for my dad with Alzheimer’s was incredibly hard, and there were times I felt like I wasn’t doing enough — even when I was giving everything I had. Some days were full of connection and pride, others of exhaustion and grief. Reading this reminds me that just showing up with love and effort is enough, even on the hardest days.
Thank you for sharing your own piece of your caregiving journey. Presence is more important than perfection, and God bless you for showing up for your Dad during that time.
Chris, as always, brining tears to our eyes!
The following passage is so deep and so true for many people, but almost everyone forgets about it...
"...his path doesn’t have to hit every milestone to still be fulfilling..."
Thank you for sharing your words again!
That’s one of my favourites, too, Marina!
Awww thanks so much Marina, really appreciate you!
Thanks once again for sharing your story Chris!
It's yet once again, resonating on the "next" level.
Thank you Aaqiel.
Thank you Chris - for always sharing your story in your own unique way (it’s truly inspiring).
Appreciate you!
Thank you for sharing Chris. Reading your story was in part a difficult read.. it resonated so much!! but it was also a little ah yes..this is why we share our stories! I am sure it was difficult to write (I’ve been there 😜) but I can feel your enlightenment and honesty about yourself and your feelings coming through. We so often plow through forgetting ourselves in the process. Well done for expressing this so beautifully.
Thank you so much Haley. I had never put the full journey together quite like this and so it was enlightening for me just to write it all out and see how far we’ve come as a family.
Great point, Haley!
When we’re deep in caregiving, navigating the issue/crisis, it’s so easy to plough through without processing the impact it has on us … I guess, often, because we’re already pivoting into the next issue/crisis. Chris' words explain his mindset shift so well.
Learning how each caregiver has explained their journey to their younger self in these letters has been a real gift to us as readers. They reveal so much about us, the perfectly imperfect humans doing the caregiving!
You are a wonderful cheerleader to your younger self and to all the other caregivers. Thank you for sharing your wisdom and the magic of Bray Bray! The photos of him are great and display his light.
Thank you Julie!
Wow, thank you Chris for sharing your journey. The poem at the end is so powerful. He calls you ‘Dad’ in his own way. He knows you more than you realise. He sounds like an absolute blessing to be around. May the three of you continue to enjoy the journey together, to face the challenges and soak up the beauty of each moment.
so special.
Agreed!
Thank you so much Sally. Bray Bray definitely has his own way of letting us know he’s with us. We are blessed with every laugh, every smile, every reach of his hands.
My heart was always with Bray Bray, but reading this…it was so heartfelt, so touching. So emotional, my heart goes with you Chris and Melanie as well. Your names are what resilience means.
Thanks Victoria
Appreciate you Marcela!
Chris, as with everything you share, there is such deep emotional resonance in the purity of your voice - the raw honesty, the confessional yet tender nature with which you write. I walked with you, from Bray Bray's infancy to today, and as I did, I remembered the similar pathway we walked with Sarah. There is such rage (I think you used the word fury) with practitioners who really have no bedside manner and deliver news in such a callous, cruel way.
You asked the question, "How could a doctor so brilliantly take care of my son while so flippantly talk to me?" or some variation of that, and it really struck me as a universality I have experienced dealing with health care, both as a system but also the people within the system who are not trained to understand or sit with complexity and allow the humanity of painful moments with their patients to simply be.
That's hard. And it's also rare.
I've thought a lot about the things you write that pertain to Bray Bray and you learning a new way to communicate, outside of verbal forms. Reflecting on that, particularly with a friend of mine who is struggling with radiation-related aphasia, I told her one day that I knew someone (you, but I didn't mention you by name) who is raising a son who can't communicate verbally, yet there is a way to still convey a new type of language with the people you love. I'm not sure if I'm saying this the way I want to right now, because it feels a bit awkward the way I'm writing it.
Essentially, what I mean is this: Witnessing you with Bray Bray is teaching me that love doesn't need a spoken language, just a shared heart. And that there are times when words can tarnish what we really mean to convey to someone we love. Maybe shared space and silence matters more than verbosity. Maybe there's a deeper love at play when we learn how to understand each other beyond what we say. That's what I'm learning from you.
Victoria, this was so incredible. Thank you for sharing Chris and his voice and all the generous ways you introduce us to other caregivers!
Thanks, Jeannie. I hear you. What you describe is akin to how caregivers connect with loved ones who have dementia as well; non-verbal communication, music, and other sensory interactions with food, familiar smells, soft textiles, and touching hands, connect to- and 'speak' feelings that can connect us.
I think every long-term caregiver forms a special language with those they care for, I know I have. xo
I think you’re right, Victoria. There is a love beyond words for sure.
Jeannie, I can’t thank you enough for your empathy, support, and our growing friendship. I have definitely felt that rage, and I still have that defiance in me, but also that added self-awareness and positive embracing of Bray Bray as he is.
I also agree that you can be present and show love without spoken words. There’s a reason why body language is well-researched and studied, because our actions and reactions in those silent moments matter.
Bray Bray continues to teach me how big those non-verbose moments are. In fact, they mean everything to us as we take care of him and he communicates with us in his own way.