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 lyenochka
I'm impressed at your diligence. Were you on that ride through the fire? You say that you were "upset to learn of this" so you learned about his pain and biting himself through someone else? I'm so glad that Jonathan's uncle was able to write a letter to affirm your expert and loving care over all those years.
reply by the author on 28-Mar-2024
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I'm impressed at your diligence. Were you on that ride through the fire? You say that you were "upset to learn of this" so you learned about his pain and biting himself through someone else? I'm so glad that Jonathan's uncle was able to write a letter to affirm your expert and loving care over all those years.
Comment Written 28-Mar-2024
reply by the author on 28-Mar-2024
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The driver told me later. I couldn?t have gone, as he lived an hour from me, and I wouldn?t have been able to get home again, (and my car wouldn?t have been permitted to go as it was not essential travel).
Thank you for reviewing . I appreciate it a lot, especially as I believe it had expired.
Wendy
Comment from Spitfire
A six for such a detailed recall of the events and writing with such clarity. You would make a wonderful nurse. You fought hard to be his legal guardian. Congratulations on confronting the bureaucracy and winning!
I can see the argument for tube feeding to get his weight up, but I see your point too.
On to the next chapter...
reply by the author on 28-Mar-2024
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A six for such a detailed recall of the events and writing with such clarity. You would make a wonderful nurse. You fought hard to be his legal guardian. Congratulations on confronting the bureaucracy and winning!
I can see the argument for tube feeding to get his weight up, but I see your point too.
On to the next chapter...
Comment Written 27-Mar-2024
reply by the author on 28-Mar-2024
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Thank you Shari. Yes, you are right. He needed to increase his weight - but he was refusing to eat more than the minimum because of the unpleasant puréed food they insisted on giving him. They refused to give him foods he would enjoy. If they had listened to me from the beginning he would not have lost weight. But too late now. It was a hard battle and the winning of guardianship was good and necessary, but couldn't change this outcome, unfortunately. I appreciate your thoughtful and caring review, and also the lovely six stars - many thanks!! I am glad you are following his life story.
Wendy
Comment from LJbutterfly
Your clear and detailed descriptions of the proceedings of the Guardianship Tribunal, and your thoughts about the panel members allowed us to thoroughly understand your stressful experiences. The CEO never expected you to be as well prepared for the tribunal as you were. I was so glad guardianship was awarded to you. PEG tube feeding sounds like a procedure with more benefits for the agency than for Jonathan. I hope everything else goes 'right' for Jonathan.
reply by the author on 26-Mar-2024
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Your clear and detailed descriptions of the proceedings of the Guardianship Tribunal, and your thoughts about the panel members allowed us to thoroughly understand your stressful experiences. The CEO never expected you to be as well prepared for the tribunal as you were. I was so glad guardianship was awarded to you. PEG tube feeding sounds like a procedure with more benefits for the agency than for Jonathan. I hope everything else goes 'right' for Jonathan.
Comment Written 25-Mar-2024
reply by the author on 26-Mar-2024
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Yes, I agree. I don?t think many people would choose for their loved ones to be tube-fed, or for themselves either. Thank you for a lovely review, very understanding and caring.
Wendy
Comment from karenina
Oh, Wendy. It's such a sad state of affairs when the "powers that be" intentionally create an adversarial relationship by thwarting your efforts at every turn to express not only what would be best for Jonathan medically~~but the delicate balance between sustaining the body while crushing the spirit.
I was so happy to read that you triumphed in the legal decision -- and not at all surprised that the CEO would immediately try to flim-flam you into NOT coming back in six months, by outright lying to you.
The tension and stress of the fire -- poor Jonathan resorting to biting his arm, brought me to tears.
If only more medical authorities stopped to acknowledge the importance of the "family/love" connnection as important to the patient we'd all be light years from this PEG subterfuge and intentional disregard for the wish you expressed for Jonathan to be encouraged to continue to eat, thereby keeping his jaw strong, and to give him what joy there is in truly existing, as opposed to their "view" of reducing liability and to hell with his quality of life.
You're amazing. Jonathan needed amazing. Easy to see how God put you together!
Thank you again for honestly sharing the good, the bad, and the ugly of the care of our most needy disabled citizens.
This will make an incredible book!
Karenina
reply by the author on 26-Mar-2024
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Oh, Wendy. It's such a sad state of affairs when the "powers that be" intentionally create an adversarial relationship by thwarting your efforts at every turn to express not only what would be best for Jonathan medically~~but the delicate balance between sustaining the body while crushing the spirit.
I was so happy to read that you triumphed in the legal decision -- and not at all surprised that the CEO would immediately try to flim-flam you into NOT coming back in six months, by outright lying to you.
The tension and stress of the fire -- poor Jonathan resorting to biting his arm, brought me to tears.
If only more medical authorities stopped to acknowledge the importance of the "family/love" connnection as important to the patient we'd all be light years from this PEG subterfuge and intentional disregard for the wish you expressed for Jonathan to be encouraged to continue to eat, thereby keeping his jaw strong, and to give him what joy there is in truly existing, as opposed to their "view" of reducing liability and to hell with his quality of life.
You're amazing. Jonathan needed amazing. Easy to see how God put you together!
Thank you again for honestly sharing the good, the bad, and the ugly of the care of our most needy disabled citizens.
This will make an incredible book!
Karenina
Comment Written 25-Mar-2024
reply by the author on 26-Mar-2024
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That is the perfect expression - the balance between sustaining the body and crushing the spirit. Your caring background has given you excellent insight into the situation (eg your fourth paragraph). How I wish his health team had had someone like you! Yes, it was all about keeping him alive at any cost, to avoid liability. I had never had trouble keeping him interested in eating, and they couldn?t understand that it was the sloppy purées they insisted on him having that was the problem.
Thank you so much for a wonderful review, and for the six precious stars. Your encouraging words are sustaining me.
Wendy
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And your honest accounting of Jonathan's life and challenges is inspiring me!
Comment from Verna Cole Mitchell
It's good that the committee recognized somewhat the matters you had to deal with. You are right that the CEO had a great deal to answer for. I can't imagine that he thought you would just accept his suggestion and lose your authority. I wonder if Jonathan realizes what a difference you and your family have made in his life.
reply by the author on 26-Mar-2024
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It's good that the committee recognized somewhat the matters you had to deal with. You are right that the CEO had a great deal to answer for. I can't imagine that he thought you would just accept his suggestion and lose your authority. I wonder if Jonathan realizes what a difference you and your family have made in his life.
Comment Written 25-Mar-2024
reply by the author on 26-Mar-2024
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Thank you, Verna, for this lovely and understanding review. J probably doesn?t realise. But I know he loves me, even though he can?t express it.
Wendy
Comment from kahpot
Excellent news on some levels, though tube feeding became necessary they still seem to be doing this for the wrong reasons, I am glad to read that you now have more control over decisions regarding Johnathon, a wonderful and promising read, very well written****kahpot
reply by the author on 25-Mar-2024
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Excellent news on some levels, though tube feeding became necessary they still seem to be doing this for the wrong reasons, I am glad to read that you now have more control over decisions regarding Johnathon, a wonderful and promising read, very well written****kahpot
Comment Written 25-Mar-2024
reply by the author on 25-Mar-2024
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Thank you so much for your super review. Yes the tribunal came too late - the tube -feeding had become a necessity as he was simply eating only the bare minimum of what they insisted on giving him. Sad. Thanks again.
Wendy
Comment from patcelaw
Necessary, well written story about Jonathan's care, and I wish you the very best with all of your writing. I know that you care a lot about this young man and the things you said he's been through. Have a good day and may God bless you. Patricia
reply by the author on 24-Mar-2024
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Necessary, well written story about Jonathan's care, and I wish you the very best with all of your writing. I know that you care a lot about this young man and the things you said he's been through. Have a good day and may God bless you. Patricia
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much Patricia. Your review shows your caring and compassionate nature. I appreciate your support.
Wendy
Comment from royowen
At least you've won a moral victory with the court decisions outcome, so now one wonders where ir goes from here, whether they are ultra kind and thoughtful in their caring regime still remains a moot question, beautifully written Wendy, blessings Roy
reply by the author on 24-Mar-2024
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At least you've won a moral victory with the court decisions outcome, so now one wonders where ir goes from here, whether they are ultra kind and thoughtful in their caring regime still remains a moot question, beautifully written Wendy, blessings Roy
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you very much, Roy. Yes, the victory came a bit too late for this situation. We will see whether it is useful later on ....
Wendy
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That's sad
Comment from Paul McFarland
What a helpless situation. I can't imagine what state of mind Jonathan must have been in. I hope medical technology advances enough, in the future, such that nobody will have to go through what Jonathan has experienced.
reply by the author on 24-Mar-2024
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What a helpless situation. I can't imagine what state of mind Jonathan must have been in. I hope medical technology advances enough, in the future, such that nobody will have to go through what Jonathan has experienced.
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you Paul. Yes, he is a strong character, and has persevered through a lot of very difficult times. I appreciate your continuing with his story.
Wendy
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Thank you very much Paul for your caring and insightful review. He understood much more than he was given credit for.
Wendy
Comment from Jesse James Doty
It sounds like you got what you wanted. Guardianship of Jonathon will help you make the right decisions for his care from now on.
Although it comes with more responsibility it gives you the authority to decide what is best for him rather than having someone who doesn't care decide for you.
This is heartfelt and well-written.
Jesse
reply by the author on 24-Mar-2024
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It sounds like you got what you wanted. Guardianship of Jonathon will help you make the right decisions for his care from now on.
Although it comes with more responsibility it gives you the authority to decide what is best for him rather than having someone who doesn't care decide for you.
This is heartfelt and well-written.
Jesse
Comment Written 24-Mar-2024
reply by the author on 24-Mar-2024
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Thank you Jesse. Yes, guardianship was important legally, because now I have the right to insist on my decisions. I believe my decisions before were the right ones, but I could not insist upon them being respected and put into practice. Thanks again, I appreciate your nice comments.
Wendy
Wendy
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You were right all along and now you can get your way. Only you know what is best for him.
Keep the faith and hope alive.
Jesse