Opinions please

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I'm really after your opinions on whether IABU, I really don't think I am, exH thinks its "none of my business".

Slight back story, exH has never "parented" our children, all decisions have always been mine, we divorced four years ago, he moved back to his parents, DC and I lived on our own, I have since met someone else and we have gone on to have another child and all good. I do not have a good relationship with exH, he sees the DC (his choice) for a few hours every Sunday. He told me a couple of weeks ago, he is happy being a part-time dad as it gives his time with his girlfriend and her children

Anyway, 8 years ago, exH dear brother (who I thought the world of) was diagnosed with MND and sadly, he lost his battle six months later. The most horrendous and debilitating condition. ExH (one of a twin) has now announced to me that his twin brother has also now been diagnosed with the same condition, it has now been deemed hereditary. I am very shocked (and terrified) for my own children, rightly so? He asked me not to tell the DC (DS is 12, DD 8) or anyone else. I agreed, I need to process the information and assumed exH was being tested, as he said he was. He then decided, he won't have the test, which I feel slightly pissed about. Although I understand he is probably terrified, again rightly so, I'm not sure at this stage whether I want to know whether my DC also carry the gene - does this make sense? So we agreed, that until we had time to process this diagnosis, the DC would not be told.

Until, of course, yesterday. He decided to tell them, without any word of warning or discussion with me. He has taken that decision upon himself and I am so angry. He may be their dad, but he has chosen to have very limited contact with them, he takes no interest in their education, hobbies, nothing. And yet, he feels he is justified in telling them this major, possibly life-changing information, and its none of my business??

Not only that, since he has taken it on himself to tell our DC, he should also be telling the mother of his eldest son, and also the former wife of his eldest brother, whom has DC with before he passed away.

Sorry, long-winded I know.......

So, AIBU to be fuming that he took that decision away from me? And AIBU that I'm terrified for my DC??

So many emotions right now.

Thanks for reading.

YANBU

There isn't anything you can do re. him telling them, just pick up the pieces. You already knew he was a tit so there is no surprise there. Don't waste energy being angry with him, concentrate on dealing with your DC.

I'd be looking into a test for the DC as soon as possible.

He's a massively irresponsible dick. He doesn't have a close relationship with his own children but decides to give them potentially worrying news. It's the sort of thing that needs a plan in place so you/ other trusted adults are prepared for questions and emotional issues.
Of course you'll be concerned for your dc. Can you contact your gp to discuss the best steps to take?

And yes. Ignore him and his memememe over this. Focus on your dc.

I understand what you are saying about testing DC, but even if the result was positive and they carried the gene, there isn't much that can be done at this stage or at all?

Maybe I'm burying my head in the sand, but at this stage, I'm just not sure I want to know? Its just such a horrible condition, it terrifies me. ExH has tried palming it off with "they will be ok". But its hereditary? He has no knowledge of that.

I don't know enough about it to know whether an early diagnoses would help. You need to find out though. Contact your GP or MN charity/organisation. If there is any advantage medically, psychologically or practically to having an early diagnoses then you owe to your children to get your head out of the sand.

Totally agree, unfortunately there is no cure at this stage for MND, although a small minority live for many years with the condition, life expectancy beyond 5 years is rare.

I'm so sorry you're going through this. I think the first step is testing. Inheriting the faulty gene doesn't mean MND is inevitable but a negative result would give you massive relief.

The best thing would be for your ex-husband to be tested as if he's negative your children will certainly be.

Is your ex's twin identical or fraternal? Identical will mean he is affected for certain and therefore your children must be tested.

I would not want my children to have that gene and not know about it. It has far reaching implications for their own families and plans as they get older.

Nope identical.

I agree what you are saying about not wanting your children to have the gene and not know about it, but at 12 and 8, I don't want them to know the fear of that. Does that make sense? I don't know what to do or how to feel, I just know they are my babies and the fear of them having to live with this is pulling me apart emotionally.

Whilst at the same time the anger of him taking this decision out of my hands, has left me seething

My husband had tests for mnd a couple of years ago. thankfully they were negative but I completely relate to how you are feeling about your children. What exactly do they know? Do they know there is a chance they will develop it? Did they see their uncle and have an awareness of what mnd looks like? Are they likely to be worrying and fretting about what may be.

You know your children best. in some ways knowing about something as a child and growing up with the knowledge can be far less stressful than a big reveal as an adult. I don't think you can deny it if they have been told.

It is so hard to know if you you should have the knowledge now if the. have the gene.
personally I think having the knowledge that they may have it is as stressful as knowing for definite.

Science is developing all the time. Cures and medications are becoming so much more complex. The difference in treatment of hiv in the last 20 years is immense. Things may be very very different for your children if they develop mnd as there will new discoveries as to how to treat.

I am so, so sorry you are having to cope with this. It is all consuming and exhausting. Sending a very big hug. and a shoulder to lean on or cry on. x

Also there is absolutely no way your son should have to deal with the reactions of adults . Either your ex husband needs to contact them, or, and it sounds like he is a waste of space, you will need to go order to protect your son. It is far too big for a child to cope with and your ex should be ashamed for putting him in that position.

I'm sorry that he's done this. He's a monumental jackass, but you know that already 🙁 Ignore his absolute cuntfuckery about it not being any of your business. His health (in as far as it affects your DC) & your kids health is absolutely your business.

I wonder why he told them?

Do they know you already knew?

How have they reacted?

Sadly, it's too late to put any cats back in bags, so you need to move forward. You are going to worry about IF they have the gene or not, you know what the likely outcome is if they do - you can't unknow any of that. So really, you are better off to find out. If they're clear then no more worrying, if they aren't there might be trials, or future treatment they're eligible for, support groups etc & they might just make different life choices.

Of course he's been a monumental fuckwit telling them like that, but try to remember he hasn't caused the actual situation that you do, in fact, need to deal with. It wasn't sensible to pretend it didn't exist.

I hope you get them tested & they are both clear x

He didn't tell them that it could affect them later on, just that their uncle has the same condition that killed their other uncle. However, DS is 12 and very bright, will investigate anything he doesn't understand so he will work it out for himself if I don't discuss it. I just feel they, especially DD, are too young, it will terrify them.

I do actually believe he told them to spite me. He has previous for this. He has an older son with an ex, but has never met him (that's a whole different story!) I tried to get him to have a relationship with said son, but he wasn't/isn't interested, therefore, we agreed that our DC didn't need to be aware at young ages. However, when we split up he decided to tell DS in front of me about how he has another son, that I had somehow prevented him from having a relationship That was all to spite me and I had to deal with the fallout from that. DD still doesn't know.

He is a spiteful man