Honestly. You can't force them.
They may never have problems with NF if they have it and it may not be till they have children that they are forced to face the facts of this generic disorder. Some people don't want to be faced with things that confront their own mortality. You gave them the facts, encouraged them to be testing and since they are adults that's all that can be done.
I guess thats were I am at with it. I just know its also probably not a decision they really made for themselves, it would have come from their dad whose always been weird about them being treated or diagnosed with anything but they are the ones that will have to deal with the fall out if they don't get diagnosed, Its hard because if you just google it they make NF sound so mild when we all now how serious it is and how much it impacts us. I'm the kind of mum in general that lets teens and adults make their own decisions, this shouldn't be any different. I agree with everything you are saying about mortality. When I explained to my family and friends how I wont have normal life expectancy they just don't want to hear it at all. I wasn't expecting that, but I know I buried my head in the sand for a long time too so its understandable that others will do the same.
I totally understand that. I'm very sorry that your ex alienated the children against you and is convincing them genetic testing isn't needed. Just keeps being supportive when you are in contact.
If they haven’t had any visible signs or issues by the time they’re adults I can understand why they wouldn’t want to get tested. I got diagnosed as a baby or young child and it’s been obvious my whole life. Whereas I probably wouldn’t get tested for an illness a parent or grandparent had that I have no signs of. I can understand your frustration.
They have lots of cafe au lait spots, back pain problems a hunch and moles that look related to NF1 also diagnosed with adhd, its all there and i've explained how they are symptoms of nf, I mentioned it to my 25 year old, but haven't made much out of it because they dont have symptoms like my youngest
that is so much to deal with all in a short span of time. first and foremost, make sure you have the help and care you need to take care of yourself. you’re not “the sick mom”. you’re a human dealing with health challenges and that’s perfectly alright. take care of you.
in separation/divorce situations, the dynamics are tricky because of so many entangled emotions. you want the best for your kids, and are forward-thinking for their future, but they may not be in a place to receive that information or help. and that’s okay too.
the best you can do is be your loving self, don’t succumb to the mind/emotional games common in post-divorce. your ex may be playing it up, your kids may be “siding” with him- but you are in the long game… meaning avoid comparison. set healthy boundaries, stay your own course. be there if and when your kids need advice or help regarding their health. sending lots of love and hoping for a healthy relationship
with your kids as time goes on.
Honestly. You can't force them. They may never have problems with NF if they have it and it may not be till they have children that they are forced to face the facts of this generic disorder. Some people don't want to be faced with things that confront their own mortality. You gave them the facts, encouraged them to be testing and since they are adults that's all that can be done.
I guess thats were I am at with it. I just know its also probably not a decision they really made for themselves, it would have come from their dad whose always been weird about them being treated or diagnosed with anything but they are the ones that will have to deal with the fall out if they don't get diagnosed, Its hard because if you just google it they make NF sound so mild when we all now how serious it is and how much it impacts us. I'm the kind of mum in general that lets teens and adults make their own decisions, this shouldn't be any different. I agree with everything you are saying about mortality. When I explained to my family and friends how I wont have normal life expectancy they just don't want to hear it at all. I wasn't expecting that, but I know I buried my head in the sand for a long time too so its understandable that others will do the same.
I totally understand that. I'm very sorry that your ex alienated the children against you and is convincing them genetic testing isn't needed. Just keeps being supportive when you are in contact.
thank you for the advice much appreciated and reassuring
If they haven’t had any visible signs or issues by the time they’re adults I can understand why they wouldn’t want to get tested. I got diagnosed as a baby or young child and it’s been obvious my whole life. Whereas I probably wouldn’t get tested for an illness a parent or grandparent had that I have no signs of. I can understand your frustration.
My father didn’t show signs until he was about 30. I started showing signs since birth.
They have lots of cafe au lait spots, back pain problems a hunch and moles that look related to NF1 also diagnosed with adhd, its all there and i've explained how they are symptoms of nf, I mentioned it to my 25 year old, but haven't made much out of it because they dont have symptoms like my youngest
that is so much to deal with all in a short span of time. first and foremost, make sure you have the help and care you need to take care of yourself. you’re not “the sick mom”. you’re a human dealing with health challenges and that’s perfectly alright. take care of you. in separation/divorce situations, the dynamics are tricky because of so many entangled emotions. you want the best for your kids, and are forward-thinking for their future, but they may not be in a place to receive that information or help. and that’s okay too. the best you can do is be your loving self, don’t succumb to the mind/emotional games common in post-divorce. your ex may be playing it up, your kids may be “siding” with him- but you are in the long game… meaning avoid comparison. set healthy boundaries, stay your own course. be there if and when your kids need advice or help regarding their health. sending lots of love and hoping for a healthy relationship with your kids as time goes on.
<3 thank you
What’s the test to confirm if you have it?