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Forum
-> Children's Health
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amother
OP
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 Mon, Jan 29 2024, 7:47 pm
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Does anyone here have a child with a degenerative condition? Life-threatening or life-altering? How/when do you speak to that child about it? What about the older siblings?
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amother
Ginger
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Mon, Jan 29 2024, 7:49 pm
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I have a sibling like that. There was never an official talk. It was just something we naturally saw. This is an obvious condition though.
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amother
OP
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Mon, Jan 29 2024, 7:52 pm
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Was it difficult for you that way?
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amother
OP
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Mon, Jan 29 2024, 7:56 pm
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I am also worried to talk about it with other people in case my kids hear it from another source....
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amother
Ginger
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Mon, Jan 29 2024, 7:57 pm
| amother OP wrote: | | Was it difficult for you that way? |
No was very natural. They're a bit older than me.
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amother
OP
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Mon, Jan 29 2024, 8:01 pm
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Oh, I see. This is regarding our youngest, with my other children not so much older.
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amother
Starflower
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Mon, Jan 29 2024, 8:01 pm
Reach out to professionals.
Chai lifeline has a camp with some children that have degenerative diseases, Camp Simcha Special. The campers find being with children like them very supportive. Chai lifeline should have professionals trained with this population.
Chazak
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amother
Ginger
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Mon, Jan 29 2024, 8:03 pm
| amother OP wrote: | | Oh, I see. This is regarding our youngest, with my other children not so much older. |
What age range are your kids?
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amother
OP
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Mon, Jan 29 2024, 8:05 pm
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My older kids range from 8 through 13.
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amother
OP
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Mon, Jan 29 2024, 8:07 pm
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Our youngest has an obvious handicap now, which the other kids know about. But they don't know that it's just a piece of the whole condition and that there will be additional developing issues
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amother
Crimson
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Mon, Jan 29 2024, 8:13 pm
| amother OP wrote: | | Our youngest has an obvious handicap now, which the other kids know about. But they don't know that it's just a piece of the whole condition and that there will be additional developing issues |
Definitely reach out for professional support( you can probably use it anyways? This must be so hard!). My guess would be that it’s better for the older kids to be told the truth- maybe not t all the details. Otherwise it can be scary to watch the changes etc.
Sharing can be something like- you know shimmy has a condition that makes him xyz (intellectually delayed? Wheelchair bound etc). In most kids with this condition they also slowly lose more koach and it gets worse. We daven to hashem that shimmy should always be comfortable and have the best life even with his condition. I want you to know and also know that if you have any questions or other ppl ask you, you can always ask me.
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amother
Forsythia
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Thu, Feb 01 2024, 10:38 pm
No advice op, but as medical mom, just sending lots of hugs. Hashem should give you lots of koach. Must be so heartbreaking to go through this... I hope you can get some irl advice. Perhaps reach out to yahalom to put you in touch with other moms that deal with this?
Wishing you refuahs and yeshuas
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amother
OP
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Thu, Feb 01 2024, 11:50 pm
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We have an appointment with a retina specialist next week to see if dc vision has started to change. Davening hard that it has remained the same!
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amother
Forsythia
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Fri, Feb 02 2024, 2:13 am
| amother OP wrote: | | We have an appointment with a retina specialist next week to see if dc vision has started to change. Davening hard that it has remained the same! |
We will have you in mind!
Besuros toves
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