Jonathan's Story
Viewing comments for Chapter 24 "The good, the bad, and the sad"Our fostering journey with a severely disabled boy
24 total reviews
Comment from T B Botts
Hello Wendy,
it sounds like there were victories and defeats. I don't know that I would have been able to withstand the constant stress. I'm so glad that God gave you a heart for Jonathon and you had the determination to carry through on his behalf. Well done gal.
Have a blessed evening.
Tom
reply by the author on 24-Mar-2024
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Hello Wendy,
it sounds like there were victories and defeats. I don't know that I would have been able to withstand the constant stress. I'm so glad that God gave you a heart for Jonathon and you had the determination to carry through on his behalf. Well done gal.
Have a blessed evening.
Tom
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much, Tom. Yes, it was mixed. I now had full authority, but it was too late, and they would have still done the wrong thing behind my back. A very thoughtful and caring review,
Wendy
Comment from barbara.wilkey
WOW! They were not completely honest with you about the tube feeding, somehow, I am not surprised. It is good that you have total legal care over Jonathan. At least something good came from it.
reply by the author on 24-Mar-2024
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WOW! They were not completely honest with you about the tube feeding, somehow, I am not surprised. It is good that you have total legal care over Jonathan. At least something good came from it.
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much, Barbara. Lovely review. Yes, it was a good result, but too late for that situation, unfortunately.
Wendy
Comment from Mrs. KT
Hello, Wendy,
What a harrowing chapter that I found incredibly interesting but very disturbing.
I honestly don't know how you found the courage and strength to carry on as you did. And I feel the same about your beloved Jonathan.
You both were incredibly heroic...My heart aches for both of you.
Below, please find two areas that may need your attention:
*The panel always consists of a lawyer, a professional person who has experience of the treatment of people with a disability, and a community member who has (lived experience of a disability.) The words/phrase within the parentheses do not flow well together... unless I am misunderstanding their intent, and if I am, please accept my apologies!
*The disability service had little to support their case except that I was "not responsible", in delaying needed approval for tube-feeding, and that "such people as Jonathan usually aspirated and died because of swallowing difficulties,"(.") They would have emphasized that...
Thank you for sharing, Wendy!
Fondly,
diane
reply by the author on 24-Mar-2024
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Hello, Wendy,
What a harrowing chapter that I found incredibly interesting but very disturbing.
I honestly don't know how you found the courage and strength to carry on as you did. And I feel the same about your beloved Jonathan.
You both were incredibly heroic...My heart aches for both of you.
Below, please find two areas that may need your attention:
*The panel always consists of a lawyer, a professional person who has experience of the treatment of people with a disability, and a community member who has (lived experience of a disability.) The words/phrase within the parentheses do not flow well together... unless I am misunderstanding their intent, and if I am, please accept my apologies!
*The disability service had little to support their case except that I was "not responsible", in delaying needed approval for tube-feeding, and that "such people as Jonathan usually aspirated and died because of swallowing difficulties,"(.") They would have emphasized that...
Thank you for sharing, Wendy!
Fondly,
diane
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you, Diane, for this lovely review and six stars. I can't express how encouraging you are, but I greatly value it, along with your insightful input. Thank yo too for the fixes - the first is a new modern expression, which everyone here uses all the time ("lived experience") but I understand what you mean so I have changed it to "... who has personal experience of living with a disability" and I do think it reads much better now. As for the comma ... grr ... careless reading on my part (about five times!). Also fixed.
Thank you ... for everything.
Wendy
Comment from GWHARGIS
I'm glad you and Konathan won, but it honestly sounded like a hallow victory. They would of course have a couple of more hoops that they had to jump through. Poor kid, though he was gaining much needed weight, he lost his enjoyment of food. Another riveting installment. Gretchen
reply by the author on 24-Mar-2024
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I'm glad you and Konathan won, but it honestly sounded like a hallow victory. They would of course have a couple of more hoops that they had to jump through. Poor kid, though he was gaining much needed weight, he lost his enjoyment of food. Another riveting installment. Gretchen
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you so much, Gretchen, for this thoughtful review, and also for the valued six stars. You are right, it was a hollow victory, too late for this situation, and behind my back they would have reverted to giving him puréed food. Many thanks for staying with my story - real life is very hard sometimes, to read about, as well as to live through.
Wendy
Comment from BethShelby
I've certainly learned a lot from reading this. I wish everyone who deal with those in this condition would read it. If they really care about those they treat, this should make a difference. I'm glad you won the board.
reply by the author on 24-Mar-2024
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I've certainly learned a lot from reading this. I wish everyone who deal with those in this condition would read it. If they really care about those they treat, this should make a difference. I'm glad you won the board.
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much. I am glad it has been informative; I know it makes for depressing reading at times. I appreciate (and value) your continuation.
Wendy
Comment from Wayne Fowler
Well written, of course.
Congratulations on the exciting win, albeit somewhat diminished by subsequent realities of the tube-feeding process.
And the ordeal of the drive home! What a nightmare. We followed the news of Australia's fires. They were horrible!
I confess ignorance, but isn't tube-feeding reversible at some point?
Best wishes.
reply by the author on 24-Mar-2024
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Well written, of course.
Congratulations on the exciting win, albeit somewhat diminished by subsequent realities of the tube-feeding process.
And the ordeal of the drive home! What a nightmare. We followed the news of Australia's fires. They were horrible!
I confess ignorance, but isn't tube-feeding reversible at some point?
Best wishes.
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much, Wayne, for this excellent review. You are right, it can be reversible. I have a friend who had jaw surgery for cancer. He was tube fed for a while, (and still is at times), but he can eat normally again, and mostly does, but has difficulty if food is too hard to chew. He has lost a lot of jaw and mouth muscle strength , so can?t manage things like steak or pizza, needs softer foods. Jonathan lost too much jaw strength, and can?t eat well enough to maintain his weight. Thank you again for your interest, and for continuing to follow.
Wendy
Comment from Jim Wile
Congratulations on winning the case, Wendy. I only wish the results had been more satisfying for all involved, especially Jonathan.
In an ideal world, that CEO should have learned a lesson from this and realized the ways of his organization were not in the best interests of its patients, but it seems like this individual is beyond hope in that regard.
I sincerely hope you get this story published so that others can see what problems are rife within this organization with that CEO as the head. He sets the tone of the place, and that tone is rotten and has filtered down throughout the management but not so much the immediate caregivers who for the most part seem decent. They need a clean sweep at that place.
I fear what's coming for Jonathan with that group in charge. I hope he can hold on long enough until something is done about it.
reply by the author on 24-Mar-2024
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Congratulations on winning the case, Wendy. I only wish the results had been more satisfying for all involved, especially Jonathan.
In an ideal world, that CEO should have learned a lesson from this and realized the ways of his organization were not in the best interests of its patients, but it seems like this individual is beyond hope in that regard.
I sincerely hope you get this story published so that others can see what problems are rife within this organization with that CEO as the head. He sets the tone of the place, and that tone is rotten and has filtered down throughout the management but not so much the immediate caregivers who for the most part seem decent. They need a clean sweep at that place.
I fear what's coming for Jonathan with that group in charge. I hope he can hold on long enough until something is done about it.
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much for this very thoughtful and caring review. Yes, the results were too late to benefit J in this situation, but, they have been used since. There were and are some good things in between all the dramas .... Thanks too for your great encouragement.
Wendy
Comment from Rachelle Allen
Wow. This feels like a victory on paper only, doesn't it? He's still having to be tube-fed (and that comment about his STILL maybe aspirating? I was absolutely INCENSED by that one! Everything would have been handled so differently if you'd been given THAT information earlier!! Freakin oy! You handled yourself with such diplomacy after learning that. Myself, I'd have gone into Immediate Scorched Earth.)
Still, I applaud your tenacity that resulted in the victory. And I'm sure you're right, that the gift from his father definitely had an impact. He came through for you just when you needed him most, but it's because you'd been so full of love and caring and compassion and diligence for his son that he was willing to put himself into the fray, I'm sure. He recognized your contribution and followed suit with the way he could contribute, as well.
Oh, and that CEO: Don't worry about re-filing after six months. What a CON ARTIST that guy is!! An absolute snake in the grass, isn't he?
Jonathan is such an amazing person. What a bulldozer! Like his father, he sees what your investment is in him, and he matches it for YOU. You're an inspiration to so many, Wendy, myself included, as I read this remarkable story.
Fantastic job, yet again. Can't wait for the next chapter. xoxo
reply by the author on 24-Mar-2024
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Wow. This feels like a victory on paper only, doesn't it? He's still having to be tube-fed (and that comment about his STILL maybe aspirating? I was absolutely INCENSED by that one! Everything would have been handled so differently if you'd been given THAT information earlier!! Freakin oy! You handled yourself with such diplomacy after learning that. Myself, I'd have gone into Immediate Scorched Earth.)
Still, I applaud your tenacity that resulted in the victory. And I'm sure you're right, that the gift from his father definitely had an impact. He came through for you just when you needed him most, but it's because you'd been so full of love and caring and compassion and diligence for his son that he was willing to put himself into the fray, I'm sure. He recognized your contribution and followed suit with the way he could contribute, as well.
Oh, and that CEO: Don't worry about re-filing after six months. What a CON ARTIST that guy is!! An absolute snake in the grass, isn't he?
Jonathan is such an amazing person. What a bulldozer! Like his father, he sees what your investment is in him, and he matches it for YOU. You're an inspiration to so many, Wendy, myself included, as I read this remarkable story.
Fantastic job, yet again. Can't wait for the next chapter. xoxo
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much Rachelle - and for the six stars as well, which continue to offer both support and encouragement to keep going. The CEO was a sly and manipulative man, and yes, the victory was too late really for that situation. He'd already lost most of the muscle tone and eating skills he had, over the last little while, and really didn't care to try too hard, probably because of what they were offering.
Yes, he is a tough person, and his strength of character kept me going. He had will-power and ability to make clear choices. Thank you again for such a lovely review.
Wendy
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It's such an exceptional book, Wendy. xoxo
Comment from Tom Horonzy
Check those boxes.
We have the proof.
"We did not malpractice.
Caring for the boy.
It is our priority. And she ...
Is not a professional.
Still, via court orders,
she is in control
Growllll.
Absurd."
Poor child.
Ever enduring.
Never knowing
if he is hungry or not
So we feed.
24/7
Sorry for the experience can never be said frequently enough.
You are a saint.
reply by the author on 24-Mar-2024
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Check those boxes.
We have the proof.
"We did not malpractice.
Caring for the boy.
It is our priority. And she ...
Is not a professional.
Still, via court orders,
she is in control
Growllll.
Absurd."
Poor child.
Ever enduring.
Never knowing
if he is hungry or not
So we feed.
24/7
Sorry for the experience can never be said frequently enough.
You are a saint.
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you Tom. What a great summary you have given! Yes, he has had a difficult life, for sure. I appreciate your thoughtful and kind review.
Wendy
Comment from Begin Again
I simply can't express my sorrow for Jonathan and your family...I was happy you won, but did you? It seems that the people have a mindset of I know better than you and regardless of what they are asked to do, they resort to their own ways.
The fire was insane and I can't even imagine how horrific it was for Jonathan. Sent shivers through me.
Very well written as always.
Smiles and hugs, Carol
reply by the author on 24-Mar-2024
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I simply can't express my sorrow for Jonathan and your family...I was happy you won, but did you? It seems that the people have a mindset of I know better than you and regardless of what they are asked to do, they resort to their own ways.
The fire was insane and I can't even imagine how horrific it was for Jonathan. Sent shivers through me.
Very well written as always.
Smiles and hugs, Carol
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you Carol. In many ways it was a token victory especially at that time, but sine then I am using it for his good - and they know I am still here, still watching, still noting everything. I even require their communications via email, not just phone calls, so there can be no misinterpretation ... and I have records. Thank you for such a lovely and caring review.
Wendy
Wendy