Don't know what to do, please help!(59 Posts)
This may be a bit off topic to go in aibu, however if mods can think of a better place, feel free to move it there.
My husband and I are both classified as severely disabled-although to be fair neither of us view ourselves as having disabilities and we do our best to live our lives to the full.
I have bipolar and my husband has a very severe form of a genetic blindness called retinitis pigmentosa or rp. Rp normally causes blindness in the late teens or early twenties but my husbands form is so bad he was registered blind at 10 months and now has no vision.
As rp is hereditary any children we have get a 50/50 chance of the disease. We already have one son who at 19 months is showing no signs of visual impairment and the doctors say it is now very unlikely he has the faulty gene.
Only problem is husband now wants child number 2. I don't. It is not just the risk of blindness. It is the fact I would have a 30% chance of a bipolar relapse and at 37 I feel too old. Also I run a business and work 90 hour weeks-it is a labour of love and the reality is if I had a child I would have to leave home and go live in my office for 3 months or so as a baby would slow me down (and yes I know may people may think that is a disgrace but I am a workaholic).
I cannot have an abortion or IVF with prenatal diagnosis for religious reasons.
What should I do?
I think the advice will probably be unanimous; you don't want another child, so don't have one! It really is that simple.
All I can advise is talk and talk and talk to your DH. Whatever your reasons or his, there is disagreement so you have to talk it through until you reach agreement. If you don't reach agreement, nothing changes.
You have valid reasons from your OP to not want another child. To be honest, you don't NEED a valid reason, I am not having any more children because I don't want anymore children!
I hope you and your DH can come to an understanding with each other.
If you dont want baby no.2 then stand your ground. Even without the medical probabilities, no woman should be forced to conceive a child she doesnt want.
Your dh may want a second child more than he wants to stay with you and only have one child, but this is no reason to force yourself to do something you dont want to do.
You should not have a child that you don't want.
That is unfair to you and it's bloody unfair to the child.
It's one of those awful, awful situations where there's no middle ground. You can't have half a child, or a child on weekends! It's either a child or no child.
You are not being unreasonable to not want a child. He is not being unreasonable to want one.
However, I think it is better to not choose to try to conceive a child when both parents don't want one than to choose to try to conceive a child when both parents didn't want one.
And, ultimately, it's your body and if you don't wish to carry another child - nobody has the right to try to make you.
But I can't stress enough that none of that means I think that your husband is unreasonable to want another child. I know what it's like to want another child when the other person doesn't. It's really painful.
Your body, your choice. It really is as black and white as that. I sympathise with your H, but that is as far as it goes for me.
Health-wise you have a number of concerns. You don't say how old your DH is but even if you conceived tonight you'd still be 37/38 when your baby arrived, so at least 55 by the time your youngest reached 18. Nothing wrong with that of course but by then additional health issues may have arisen.
Is your DH worried about your DS being a 'lonely only'? Does he come from a large family himself? Being an only child doesn't mean your son will grow up to be solitary or insular.
At the moment you have a work-life balance that works for you. It makes sense to see what you have and how another baby would change things.
That makes me wonder - please don't take this the wrong way, is the question of another baby actually DH's way of anchoring you to the home, does he feel you are throwing yourself too much into working?
You are right my husband comes from a big family (he is one of 6) and my MIL had her youngest child at 41. Having said that I feel my MILs parenting leaves a lot to be desired. When her youngest got in with a bad crowd she threw him onto the streets at 15 (he was TWOC-ing cars and truanting). He now lives with his severely schizophrenic dad who is unable to care for him and can be very violent and unpredictable.
My issues with having another child are as follows:
1. I hate having sex and have managed to avoid it for 6 months. Do not want to start again. I work too hard and am too tired and/or busy for it.
2. I am in my opinion too long in the tooth to become a mum again.
3. If I want a baby I will have to come off lamotrigine an excellent bipolar and epilepsy medication that keeps me really stable. There is a risk I will relapse and go totally loco without it.
4. If I have a baby I have a 30% chance of post natal psychosis (you may have read cases of this in the papers when women become so delusional they stab their own children). This would not happen to me as I would be tightly monitored and placed in Wythenshawe mother and baby psych ward. I have been in that dump once before (after having my son) and would rather do 2 months in Strangeways than that place. (My BIL and SIL have had a lot of experience being at Her Maj's Pleasure and they both agree it is a worse place than prison).
5. I LOVE my business and am a total workaholic. I have a highly addictive personality which caused me to throw away years of my life on hard drugs. Now I work. A lot and it gives me that buzz drugs used to give me. The reality is if I had another child I would probably just leave and live at the office for a few months as I do not like being distracted. I am aware this makes me a crap mum but I cannot stop working as I get very bad withdrawal symptoms if I stop.
6. I do not want to saddle a child with a disability. Although my husband coped brilliantly with his blindness not everyone does and is father in law really struggles day to day to cope.
7. This 50 50 chance of blindness actually reminds me of playing "red or black". We have gambled once with our first child and been incredibly lucky to have a healthy boy. All good gamblers quit when they are ahead and that is what I want to do.
My biggest problem is when I see my husband with my son. He is a loving doting dad and I know being a dad is a wonderful experience for him. I feel very cruel taking away that right.
Until recently I was going to have IVF with prenatal screening but having recently found God am now unable to have this.
Just do not know what to do.
I can understand you not wanting a baby for the reasons you have given around the bi polar. For the RP though, I'm not sure its as clear cut as 50/50. My sil had genetic tests/counselling as we have RP in our family, and the risk for her children was actually very low.
But if you think another baby is going to exacerbate your bi polar, then maybe its less selfish to stick with one and be a good parent, rather than having a really hard time and struggling to cope with two.
Completely understand why you don't want to have another pregnancy/baby - have you considered adoption as a possibility?
If you do want to explore further, can you talk to your priest / vicar / rabbi / imam? I know many religious people do manage to combine a belief in G-d with an acceptance of prenatal screening.
Do you think this baby idea is about sex? Does he feel rejected by you or is the no sex from now on something that you are both agreed on and happy about?
I'm just wondering if, perhaps partly, maybe subconsciously, this is his way of bringing sex back into the relationship, iyswim.
Of course, if this is something you both agreed, then forget I asked It's just with you saying you managed to avoid it, I wondered if there was a lack of communication about it that might be causing him to suggest this?
I think you are just going to have to be very honest. You never want another baby, (or sex) it's just not going to happen, you love him very much but you understand if this is not something that he wants in a relationship, etc etc.
Your DH is a 'loving doting' father, (that shouldn't make you compare yourself and call yourself a 'crap' mum, btw), he can be so for DS, he doesn't need to expand his family with you to enjoy fatherhood.
It is a big decision and you have thought it through and been very candid here. As the other posters have said and I agree, it is your body your choice. Talk it over with DH, be as honest as you have been here. There may be other reasons for DH suggesting another baby, is he trying to evaluate what you currently have together and look at the future?
Emmon I'm not surprised you don't fancy sex as you're on lamotrigine. So am I for epilepsy. I also take topiramate, also for epilepsy and migraine. Although I believe topiramate is also used as a treatment in mental health. These meds kill your sex drive.
Women do concieve on AED's but the advice is to take very high dose of folic acid. That's a general comment. I respect your medical condition is different and you have been advised otherwise.
All your reasons for not having a baby seem to me the right option. Your are going to have to make your husband see sense.
I cannot adopt. As a bipolar sufferer and recovered drug addict I have already had one run in with the SS. It was them who placed me in the mother and baby dump. I was not unwell but they deemed it necessary for my parenting to be formally assessed for 2 months before I was allowed to have my son in the community.
Having SS involvement was one of the most unnecessary, humiliating and degrading experiences of my life. When I was placed in the dump (mum and baby psych ward) I was not allowed to touch or hold my son without having a nurse within arms length of me for the first two weeks. Obviously having bipolar makes you Myra Hindley doesn't it! Once they trusted I would not go loco and drop kick my son like a rugby ball I then had to pass a formal assessment of whether I had the capability to push a pram near roads! FGS I have a double first from Cambridge and both a car and a motorbike driving licence. However being bipolar means I am such a hafta I cannot be let loose near a main road!
Eventually the SS got bored and decided to leave me alone claiming that I parented to a high standard but the damage was done. It had a massive effect on my bonding with my son and I genuinely believe it has caused me permanent psychological damage.
I have spoken to my priest about prenatal screening and he told me in no uncertain terms it would be a sinful act. The way it works is about 8 embryos would be created and all tested for the RP. Around half would test positive and they would be destroyed. Of the others all but one would get frozen and one would be implanted. On a personal level I have to say I am very uncomfortable with this as I would basically be creating 8 or so tiny people and then condemning the disabled ones to death. Even if the Catholic Church was to allow this I cannot on moral grounds. I used to think it was OK but have changed my mind.
There are different genetic patterns of RP transmission. Unfortunately ours is autosomal dominant so it is 50/50. Your SIL's form will be autosomal recessive which is far less likely to get passed on to children.
Oooh I love topamax. They took it off me as it was raising my mood too much and making me too thin.
Am now too fat but doctors do not seem so bothered about that!
Message withdrawn at poster's request.
Emmon were you on real topamax. I loved that side effect. Dropped to a size 12. But had my dose lowered and it came off licence. Weight crept up. Now on original dose but using generic topiramate
cheap scape government policy. Now fatter than I was originally, size 18. Also on citalpram for depression, its not that great.
Sorry for going off topic.
Emmon, fair enough. I think you have made the decision that is right for you. Hope you and your DH can come together on it.
Yes real topamax. I loved it but had difficultly finding words. It was like lots of my vocabulary was on the tip of my tongue.
I get very annoyed I am on bipolar meds which cause a lot of weight gain (lamotrigine does not but my quetiapine does) and I am not being given a gastric band on the NHS. I have to pay for it.
My husband does OK as a dad but sometimes I feel he could do more. he is a couch potato and spends his days watching Bargain Hunt and Deal or No Deal on TV rather than interacting with him.
I have already made it clear that if we have another child the parenting will fall to him. I do not want to do it.
Message withdrawn at poster's request.
There are different genetic patterns of RP transmission. Unfortunately ours is autosomal dominant so it is 50/50. Your SIL's form will be autosomal recessive which is far less likely to get passed on to children.
Thats interesting. At the risk of sounding ignorant, how do you know yours is autosomal dominant? Would this just be tested by the pattern in the family, or something more?
At the moment he does all of my son's nappy changes and dresses him but I feel he is sometimes negligent in his care for him. He just sits there glued to daytime TV and does not seem to interact with him that much. When I ask him what my son has had for lunch he sometimes says "crisps". Sometimes he just microwaves a sausage roll and then just dumps it on his high chair feeding tray.
Last week I wanted to spend £50 of my wages on a toy and he did not want my son to have it as it was a waste of money.
Emmon, frankly, if you're asking for objective opinions, you haven't mentioned one good reason for having another child (not baby, child) other than your DP 'wants one'. And your last post where you said 'My husband does OK as a dad but sometimes I feel he could do more. he is a couch potato and spends his days watching Bargain Hunt and Deal or No Deal on TV rather than interacting with him.' empahsises the fact that no, you shouldn't have another.
I taught genetics at Cambridge Uni. There are 3 main types of genetic inheritance, autosomal dom, auto recessive and sex linked.
we have 2 copies of all of our genes called alleles-one from mum and one from dad. In auto rec diseases BOTH have to be faulty to get the illness. In auto dom only one needs to be defective.
Sex linked is just because the X chromosome is bigger than the Y. This means women who are XX need 2 faulty genes but men who are XY only need one as the Y cannot compensate for a faulty X.
what type of inheritance can be calculated by looking at a detailed family tree.
he could do more and I am constantly nagging about this.
i want him to go to a soft play or a sure start children's ctr group but he cannot be arsed.
Thats really interesting Emmon. Thank you. The reason I asked is because my dh also has RP, as do two of his sisters. His third sister has normal sight, the one that had the tests done. Their parents were cousins, and I assumed they both carried the faulty gene which made the risk higher, Dh and I have two children, male and female, no sight issues. We went ahead and had children without testing, because we knew we could deal with it either way. But I have no idea whether ours is dominent or recessive. I would assume then that it would be dominent because of the family tree, and because dh is male? Sorry, I'm derailing your thread. Tell me to bugger off if you want to
no not at all!
I need to go out now as have to be on site for a few hours but I will look at what you have written and try to work out the pattern of inheritance. a
Thank you so much. Its greatly appreciated.
As females in the family have got the disorder it cannot be sex linked. That leaves autosomal recessive (AR) and autosomal dominant(AD). Whether or not an illness is AR or AD depends on what the faulty gene actually does. Every gene in our body (other than those on the sex chromosomes) exists in a pair-one of the pair is from mum and one from dad. What is meant by AR is BOTH the pair have to be faulty to cause the illness. With AD only one of the pair needs the fault for someone to get ill.
A good example of AR is cystic fibrosis. The faulty gene codes for a salt transporting protein which fails to work resulting in very salty sweat and sticky mucus which bungs up the lungs causing breathing problems. In this situation if only one of the pair of genes (alleles) is faulty the person is OK as the other gene makes the salt transporters. It is only when both genes are faulty and none of these salt transporters get made that the illness results.
With AD diseases one copy of the faulty gene normally produces a protein which disrupts cell structure or function. The presence of one healthy copy does not stop the illness occurring.
Obviously all relatives share genes. This goes beyond just the basics such as hair and eye colour. In fact a lot of our behviour and temperament is geneticlally determined (although environment clearly also contributes here). First degree relatives are parents/children and brothers/sisters. We share 50% of genes with our first degree relatives. Second degree relatives are our aunties and uncles. We share 25% genetic material with them. Cousins are third degree relatives. They share 12.5% (or one -eighth) of genes.
When cousins have children this can cause problems. As they share genes they are likely to share autosomal recessive defects. Both the related parents will not be unwell as they only have one copy of the defective gene each. However when they have children there is a 1 in 4 chance that a child will get both bad copies and be unwell. Unfortunately in your husbands family there has been some bad luck as 3 out of 4 children have inherited both copies of the faulty gene when statistically only one out of 4 should have got it. Your husband will have 2 bad copies of the gene.
As you and your husband are not blood related, and as you have no history of blindness in your biological relatives, the chances you happen to have exactly one copy of the same defective gene is very very small. Therefore with your children, 50% will have one copy of the bad gene and 50% will have no bad copies. However with an AR disease one copy of the faulty gene will not cause illness, but will make that child a carrier of the condition. So based on the statistics, half your children are carriers and half are totally unaffected.
The implications of this is that there is always a chance in the future that one of your children could have a child with RP if they have children with another carrier. Chances are this person will have a history of RP in the family. However even if they do have RP in the family this does not automatically mean there is a risk as there are over 100 genes which can cause RP. Everyone affected in the same family will have the same gene, but 2 different affected families usually have a different faulty gene.
So basically if you have more children it is highly unlikely they will have RP. With your children 50% have no increased risk of having children with the condition, but the other 50% being carriers need to be careful if they choose to have children with someone else who has RP in the family.
Thanks so much for taking the time out to write all that. I've learnt far more in the ten minutes reading that than, well I have in a life time. We did vaguely ask the consultant what the chances were when I was about 30 weeks pg with dd, but he couldn't really tell us. Your post had made things a lot clearer. Thanks again, I really appreciate it.
Emmon, going off topic here, but I found your explanation to TheChao fascinating. There's one thing I didn't understand, though. If TheChao's DH has two bad copies of the gene and TheChao probably has no bad copies, why is it that 50% of the children are likely to have no bad copies? Can't DH only pass on bad copies? Sorry if that's a really silly question, I find scientific ideas difficult to grasp.
As to your question, I think you've set out a very clear rationale for not having any more children, and in something like this where there's no possible compromise, your carefully reasoned desire not to should trump your husband's desire to have another child, so YANBU.
Actually, Emmon, putting both you and your H's disabilities to one side, your H doesn't sound fit to look after your existing child, let alone bring another one into the mix
Why does your husband want another child? He's not especially interested in parenting the current child, it would clearly be immensely difficult for you and at the risk of your own health. Do you know what it is that outweighs all of that for him?
actually you are right there...oops. yes all children will be carriers. doh!
although the ss were happy with my husband and felt no neglect was occurring i just feel he should do more for our son he sits watching tv a lot and our son just entertains himself, normally by putting his hands in the dogs water bowl. i have raised this with my husband but he has no insight into the fact this is not great parenting. i think a lot of it relates to the fact he was brought up like this, when MIL looks after him she just dumps a shed load of quavers on his high chair table and seems to think this is acceptable nutrition.
i guess i am just as guilty of being selfish as all i do is work, but at least i am bringing money into the family and if i stopped working we would have to exist on benefits. although i am a crap mum in the sense i am a workaholic at least i do provide materially for him.
there is a dads group at our local childrens ctr and a few times i have physically driven him and our son there and have picked them up later. i can understand he may not want to attend other sessions as it is nearly always mums who go to these groups.
on a positive note at least he is not beating or verbally abusing our son, but things could be a lot better and it drives me up the wall.
i just feel i have turned into my gran, a bipolar sufferer who constantly works running a business. i feel sad i cannot be a better mum and feel that if there were 2 children i would be even worse.
he has just let my son play on the front step and he has fallen and has blood all over his nose. this is the second week running this has happened. i am sick to the back bloomin teeth of this and cannot understand why he cannot look after my son responsibly.
Children that age do fall over a lot, but it doesn't sound like a very sensible place to play! If you're working 90 hours a week your DH is probably exhausted from being sole carer. Are you happy this way? Do you want to spend more time with your son?
It's a mistake to have a child if you really don't want one. Perhaps the menopause fairy will step in, perhaps the minipill could be taken secretly too.
Don't have another baby that you don't want
Do focus on the one you have got
Your post is very close to home for me for various reasons.
My mum has RP and started to go blind at about 5 years old, and dad is registered blind. I think there may have been a great aunt with poor eyesight, but apart from that no one else in the family appears to have inherited RP. I have two children (adults) and a sibling has one child. Having children is a risk I was prepared to take and thankfully none of the grandchildren have RP. We took the risk because, having lived with it all my life, blindness wasn't a worst case scenario to me. My parents very sucessfully bought up three children of their own and my mum coped well. However I know she would love to see and it does cause some frustration.
My mil also has severe mental health issues and had this when I met my husband. There was always a slight chance that this was genetic too.
Fear could have stopped us having children and I'm so pleased that we made the decision we did and that the outcome was positive.
Having said all this, my nephew is an only child and he is a very happy, well adjusted child. Apart from the RP and bipolar you have perfectly vailid reasons for not wanting another child. Hope you can sort it out between you.
To complicate the genetic issue, my mum's grandparents were first cousins. I've sometimes wondered if that made her Rp more likely. We've never had genetic counselling, so don't understand it very well.
It is bloody 921 in the evening and my 19month old son is still up, toddling around. Has taken my can of fanta and poured it all over me. Has hidden the TV remote. has bashed my laptop up.
Husband has been told CLEARLY to put him in bed by 7.
I cannot cope at all. Have had a crappy day anyway and have no clue what a toddler is doing up past 9.
Have spent all evening working (other than coming on here a few times)
Am a crap mum. Probably I do not know how to bring up a child as was severely abused myself.
Number 2 is not happening. It would if I could trust husband doolittle to look after number 1 but he does not do jack.
I'm sorry to be blunt, but I don't know why you are even askign for advice on having another child when it sounds like you have some serious issues already in raising the child you do have.
You work 90 hour weeks and your husband is neglecting your son.
You're not happy with the situation so what are you going to do about it? I assume with those hours you are making good money, can you get a nanny or au pair in? Put him in nursery?
You really need to do something. He's 19 months, it's not going to get any easier anytime soon.
I think it sounds like you need to be a bit more involved. If you're home, why is it just about 'telling' your husband what time the toddler needs to be in bed? My toddler doesn't go to bed till 9, he sleeps till 8.30, it's what works for us as a family. Do you have any outside support from family/friends or a HV? It sounds like you're all struggling.
What dreamingbohemian said. Think she put it mildly actually.
To be honest, you hardly sound fit to cope with the child you have never mind even consider another. So why are you finding it hard to say no? You could just go and have your tubes tied and forget about it.
Also I find the criticism of your husband's efforts when you are out working your 90h weeks and probably haven't a bloody clue what is going on to be pretty objectionable.
You poor thing, the child took your fanta? Your dh doesn't do jack? Well what the hell are YOU doing actually?
In fact this has really riled me. Putting your condition aside and just speaking about your parenting credentials. Yes I think you are a crap mum. Entirely selfish and quick to pass the parental buck onto your husband. He sounds worse than useless too. Why don't you turn your addictive personality onto your son? Why not be an addicted to doing the absolute best you can for him? Put his needs first which include both parents. You "told your husband to put him to bed" why not assign some of your 90 hours work time to do it your bloody self. Do not even consider having another child, illness or no illness. You are self centred and not even to able to provide basic care to the one you have. Goodness help him having to neglectful parents who use their conditions as an excuse. There are so many disabled people put there who would love to have your abilities yet do a better job with less. You really need to take a long hard look at yourself and do not even consider another child.
It's unbelievable, isn't it?
"My biggest problem is when I see my husband with my son. He is a loving doting dad and I know being a dad is a wonderful experience for him."
That seems to have changed in the last few posts..
Get off the internet and sort your child out. He barely knows you from the sounds of it.
Poor bloody kid.
You have said you were abused yourself OP and your MIL's notion of parenting left a lot to be desired. You have been very candid and I hope you return here. You are a very intelligent person and I don't want to sound patronising.
I understand you were upset at being assessed by social services in regard to your parenting ability. Your last few posts regarding your son and his father's care of him are worrying. At the very least could you and your husband review arrangements for looking after DS? On a practical level a 19 month old is a handful. Please consider his needs and as someone suggested, perhaps allocate part of his care to a nanny or au pair or fix up a childminder, better for stimulation and socialisation than £50 toys.
Any able bodied adult in sole care of a child gets tired, frustrated, worn down.
I realise working such long hours must be exhausting for you but H will also be taxed. Do you spend much time with DS or do you see H as totally in charge of childcare? You said you see yourself turning into your grandmother for whom work was a driving force, a form of escape.
You were adamant about not wanting a 2nd child. It is so sad that early bonding with DS was severely hampered. If you distance yourself from DS does your H pick up all the slack? I'm not talking about late bedtimes and television, I'm not getting at you but latterly there are some concerning aspects of this thread.
Hi Emmon, is it possible you could get a nanny to take the strain off of you and dh? Some people cope with not being able to see far better than others. My dh is pretty good, yet one of his sisters really struggles with it all. Also of my best friends has rapid cycle bipolar, and she ended up walking out on her children, a decision (?) she desperately regrets these days. Things are a bit harder for you than they might be for the majority. I'm thinking about her experience as I talk to you. Recognise its not your fault. If you can afford some help it would probably be good. Be a little less harsh on yourself and dh, it does get a little easier after the early years.
i dont get it tbh, r u doung 90 hr weeks now? if ur not having sex, how much of a marriage have you?
Sorry, isn't your husband blind? How the hell is he managing to mind the child at all never mind watch Deal or No Deal on television? [Confused]
wilting - my parents are both blind and thay bought up three children with no outside help at all. We didn't get away with anything while growing up!
They also have a tv. They can hear the sound and these days there is a facility for a helpful voice to tell you what is happening on the screen ie "Mary leaves the room and slams the door behind her". It's perfectly possible to watch and enjoy tv.
they brought obviously.
Where's that edit feature again?
Sorry, I don't think my comment above was much help in the context of the OPs posts. The situations are obviously completely different. My parents were hard working and quite traditional in outlook. Despite his disability, my dad worked full time as a self employed piano tuner, while my mum stayed at home to look after us. Travelling by public transport was very time consuming and we never had much money, but they were very independant people.
OP, I think that your difficulties may go beyond mere disability. Another child would seem a very bad idea until a few things are sorted out.
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