Your post is very moving. It would be easy to just see the negative but I see you count your blessings.
I understand what it’s like to care fire a loved one whose health is failing. My husband and three of our six adult children have a rare multisystemic neurological wasting disease and I witness their decline. No one believed me when I said there was something wrong with our two youngest children, the first diagnoses didn’t come till the youngest was 23, then we all go tested. I have had to educate myself to be their advocate because most Drs have never come across this disease before and don’t understand the dangers of anaesthesia, some medication and many other treatments, so I have to tactfully draw their attention to the research. Having done the research, I know what comes next and try to stay one step ahead. Not easy. Have you ever tried juggling eels?
I am a Writing for Well-being Practitioner. I hope you find writing therapeutic. Using a journal has been helpful to me and engaging with posts like yours, is likewise. Most of all I enjoy writing poetry, somehow, a poem can encapsulate a multitude of feelings and experiences.
Thank you for sharing. Warm wishes to you and yours.
Karen, your words are so touching, and I’m grateful you shared your story here. It takes immense strength to be an advocate, especially in such uncharted territory with a condition so rare. I can’t even imagine the courage it takes to keep going, staying one step ahead, and facing the challenges you do. Thank you for bringing your kindness and insight to this space. Poetry truly does capture feelings that can be too big for regular words—I hope it continues to be a healing outlet for you. Sending warmth and strength to you and your family 💕🙏
i was isolated from my grandparents because i grew up abroad and came back too late. so one of my biggest fears is this: watching my parents fade with illness. but your words here gave me so much strength and hope, that it will be alright in the end, that it won't be all sadness and pain, that there will still be grace and love and smiles <3 much love to you and your beautiful family, Mohika! thank you for sharing your strength with us!
Oh Mahin! Yes, one can only hope and prepare and live life as gracefully, joyously as possible after one realizes it's temporary nature. I'm so sorry your circumstances were such that you were not able to spend time with your grandparents. Our fears magnify the reality. Thank you for sharing one of yours with me. I feel blessed you're here and that I could help in a little way :)
Sorry to hear this all but the way you showed your love for him will give him strength to fight against Parkinson. My papa is caught with the same disease but in early stage. Universe may heal him.
Thank you so much for sharing that with me. I’m sorry to hear about your papa, and I hope the universe brings him strength and healing. It’s hard to watch someone you love go through something like this, but the love and support you’re giving him means everything. I believe it really does make a difference. Sending love and hope your way, for both you and your papa. 💛
I don’t think I can top what others have said. Your post this week is a wonderful piece of enduring love towards your Dadu. We have a very dear friend who has Parkinson’s, and like your grandfather was against any help, but mainly the “stick” as it would show him up even more. God bless you and your family and may the support Dadu gets from you all give him. much happiness. 🙏
Oh Sally! This means so much to me. You being here, reading, and sharing your experience. Today my grandmom broke down (we all take turns and we never know whose turn it’ll be). Grief is natural. We are taking good care of him. As best as we can. But this disease is cruel, unforgiving, and restless. We pray, we hug, we try to keep him comfortable and happy. I wish grace for your friend who suffers, and lots of strength for all of you 🌸
You write with such sincere and raw vulnerability, Mo. Your poem shares all of that. Beautiful and heart wrenching all at once...yes, isn't this just how life is. If only we could have the beauty, the love, and leave out the rest. My heart is with you, Mo...with your Dadu and your whole family. Your Dadu is so blessed to have such a granddaughter who is so empathetic to his great struggles and wraps him in her love to comfort him through them. Such a love in your family to be there for each other so completely. It is all there in your photos, and yes the candid ones are most definitely the best! Everyone's love and happiness is brilliantly reflected in them. Holding you all in heart and prayer. Lots of extra love going your way, dearest Mo. ~Wendy💜🙏💞
Thank you soul friend. I have needed extra love and support this week. It means so much to me that you're here and you hold space for people you love, even strangers. I wish you the very best of weeks 💜
Extra love, prayer, and support going steadily your way! If you are like me, writing is one of the best therapies for trying times. It helps us pull up the curtain of trouble and let the light shine in. Peace filled and bright days writing, dear soul friend. 💜🙏
A very arresting essay, Mohika! We cannot argue with or contest life, we can only live it. We are born, gain, maintain, and then slowly start to lose. As it was precarious in the beginning, so it will be towards the end. With these things, we let ourselves be guided to what there will be.
Yes Patrick. You sum it well. I feel held in your presence in this space. Thank you for making time to read & share your wisdom with me. I appreciate & value it so much 🍀🌷
"This is a part of his story, and ours. A story that, despite its sadness, is still being written. With every struggle, there’s an undercurrent of love, of gratitude, and yes, hope."---such powerful words of grace, acceptance, and love, dear Mohika! My grandmother had Parkinson's so I overstand what you and your family are experiencing. Sending love and hugs to all 🩵🫂
And about the photos...I definitely prefer "real life" photos as opposed to staged ones. I smiled at the one of you sitting to the left of Dadu on the couch...so many happy smiles and good vibes. I could feel them in the photo.
Thank you for continuing to share your light and your stories! You brighten every Wednesday here on Substack, Mohika! 🌈🌈✨✨✨
What a beautiful, deeply felt, and true tribute to your grandfather who inspires even as life slowly fades away. My sister suffered from Parkinson’s and I know how the pain of losing mingles with the joy of having, Mo. Thank you for sharing this with us.
writing this essay has got me closer to people from all walks of life who share similar grief. it’s the greatest relief, Paul. I wish your family healing and love, and your sister’s soul safe passage everywhere🌷
Dear Mo, dear Dadu, dear all of you, dearest family... there’s so much love in each of you. Your humanity reaches far, all the way to where I am. Your love for each other arrives strong, serene, embracing, soothing, and moving. Thank you so much for your love for life, for each other, and for sharing the precious hearts that you are.
Yes Forrest, we're tethered by invisible sparkling love across borders, all barriers of human construct. Feeling blessed you receive it. I do too! Hope your kids are giggling away and there's warm meals wherever you are💫
I am happy to be the first to like your post. It meets me where I am with my own family love and sadness. I can find hope in it. Thank you for being open and willing to go so deep.
I prefer impromptu photos.
Your post is very moving. It would be easy to just see the negative but I see you count your blessings.
I understand what it’s like to care fire a loved one whose health is failing. My husband and three of our six adult children have a rare multisystemic neurological wasting disease and I witness their decline. No one believed me when I said there was something wrong with our two youngest children, the first diagnoses didn’t come till the youngest was 23, then we all go tested. I have had to educate myself to be their advocate because most Drs have never come across this disease before and don’t understand the dangers of anaesthesia, some medication and many other treatments, so I have to tactfully draw their attention to the research. Having done the research, I know what comes next and try to stay one step ahead. Not easy. Have you ever tried juggling eels?
I am a Writing for Well-being Practitioner. I hope you find writing therapeutic. Using a journal has been helpful to me and engaging with posts like yours, is likewise. Most of all I enjoy writing poetry, somehow, a poem can encapsulate a multitude of feelings and experiences.
Thank you for sharing. Warm wishes to you and yours.
Karen, your words are so touching, and I’m grateful you shared your story here. It takes immense strength to be an advocate, especially in such uncharted territory with a condition so rare. I can’t even imagine the courage it takes to keep going, staying one step ahead, and facing the challenges you do. Thank you for bringing your kindness and insight to this space. Poetry truly does capture feelings that can be too big for regular words—I hope it continues to be a healing outlet for you. Sending warmth and strength to you and your family 💕🙏
i was isolated from my grandparents because i grew up abroad and came back too late. so one of my biggest fears is this: watching my parents fade with illness. but your words here gave me so much strength and hope, that it will be alright in the end, that it won't be all sadness and pain, that there will still be grace and love and smiles <3 much love to you and your beautiful family, Mohika! thank you for sharing your strength with us!
Oh Mahin! Yes, one can only hope and prepare and live life as gracefully, joyously as possible after one realizes it's temporary nature. I'm so sorry your circumstances were such that you were not able to spend time with your grandparents. Our fears magnify the reality. Thank you for sharing one of yours with me. I feel blessed you're here and that I could help in a little way :)
Sorry to hear this all but the way you showed your love for him will give him strength to fight against Parkinson. My papa is caught with the same disease but in early stage. Universe may heal him.
Thank you so much for sharing that with me. I’m sorry to hear about your papa, and I hope the universe brings him strength and healing. It’s hard to watch someone you love go through something like this, but the love and support you’re giving him means everything. I believe it really does make a difference. Sending love and hope your way, for both you and your papa. 💛
I don’t think I can top what others have said. Your post this week is a wonderful piece of enduring love towards your Dadu. We have a very dear friend who has Parkinson’s, and like your grandfather was against any help, but mainly the “stick” as it would show him up even more. God bless you and your family and may the support Dadu gets from you all give him. much happiness. 🙏
Oh Sally! This means so much to me. You being here, reading, and sharing your experience. Today my grandmom broke down (we all take turns and we never know whose turn it’ll be). Grief is natural. We are taking good care of him. As best as we can. But this disease is cruel, unforgiving, and restless. We pray, we hug, we try to keep him comfortable and happy. I wish grace for your friend who suffers, and lots of strength for all of you 🌸
You are lucky to have him. Sending you and your grandpa love and healing light ✨
Indeed! So blessed!
You write with such sincere and raw vulnerability, Mo. Your poem shares all of that. Beautiful and heart wrenching all at once...yes, isn't this just how life is. If only we could have the beauty, the love, and leave out the rest. My heart is with you, Mo...with your Dadu and your whole family. Your Dadu is so blessed to have such a granddaughter who is so empathetic to his great struggles and wraps him in her love to comfort him through them. Such a love in your family to be there for each other so completely. It is all there in your photos, and yes the candid ones are most definitely the best! Everyone's love and happiness is brilliantly reflected in them. Holding you all in heart and prayer. Lots of extra love going your way, dearest Mo. ~Wendy💜🙏💞
Thank you soul friend. I have needed extra love and support this week. It means so much to me that you're here and you hold space for people you love, even strangers. I wish you the very best of weeks 💜
Extra love, prayer, and support going steadily your way! If you are like me, writing is one of the best therapies for trying times. It helps us pull up the curtain of trouble and let the light shine in. Peace filled and bright days writing, dear soul friend. 💜🙏
Beautiful. Courageous. Inspiring. THANK YOU.
Most welcome, Jonathan! I’m so happy you’re here :)
A very arresting essay, Mohika! We cannot argue with or contest life, we can only live it. We are born, gain, maintain, and then slowly start to lose. As it was precarious in the beginning, so it will be towards the end. With these things, we let ourselves be guided to what there will be.
Yes Patrick. You sum it well. I feel held in your presence in this space. Thank you for making time to read & share your wisdom with me. I appreciate & value it so much 🍀🌷
Sending you and your grandpa love and light 🫶🏾.
Thank you dear Harun, we need it 🍀🌷
"This is a part of his story, and ours. A story that, despite its sadness, is still being written. With every struggle, there’s an undercurrent of love, of gratitude, and yes, hope."---such powerful words of grace, acceptance, and love, dear Mohika! My grandmother had Parkinson's so I overstand what you and your family are experiencing. Sending love and hugs to all 🩵🫂
And about the photos...I definitely prefer "real life" photos as opposed to staged ones. I smiled at the one of you sitting to the left of Dadu on the couch...so many happy smiles and good vibes. I could feel them in the photo.
Thank you for continuing to share your light and your stories! You brighten every Wednesday here on Substack, Mohika! 🌈🌈✨✨✨
Hehehhe i’m giggling in happy tears Deanna! Tickled you remember the days I post!
What a beautiful, deeply felt, and true tribute to your grandfather who inspires even as life slowly fades away. My sister suffered from Parkinson’s and I know how the pain of losing mingles with the joy of having, Mo. Thank you for sharing this with us.
writing this essay has got me closer to people from all walks of life who share similar grief. it’s the greatest relief, Paul. I wish your family healing and love, and your sister’s soul safe passage everywhere🌷
Thank you, Mo.
Dear Mo, dear Dadu, dear all of you, dearest family... there’s so much love in each of you. Your humanity reaches far, all the way to where I am. Your love for each other arrives strong, serene, embracing, soothing, and moving. Thank you so much for your love for life, for each other, and for sharing the precious hearts that you are.
Embracing you all with all my heart.
Yes Forrest, we're tethered by invisible sparkling love across borders, all barriers of human construct. Feeling blessed you receive it. I do too! Hope your kids are giggling away and there's warm meals wherever you are💫
So many touching moments shared. Thank you for this. 💫
Hello Trudi! Thank YOU for making time today to hear me out. I feel safe & loved. I hope you have a blessed day 💫
And you, Mohika ☺️
I am happy to be the first to like your post. It meets me where I am with my own family love and sadness. I can find hope in it. Thank you for being open and willing to go so deep.
I feel soft relief to see you here, Marilyn. Thank you for seeing me and appreciating my work here. You are so loved.
I feel soft relief too. And I am so grateful.
I love how you see this! Thank you!