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I am in denial, but I need to face up to reality

57 replies

emkana · 31/03/2006 20:41

As some of you know I have been told that it is likely that my baby will be born with achondroplasia (dwarfism).

While a small part of me has taken this in a large part of me is in complete denial. I just can't stop thinking about all the stories I have read (and heard) of people who were told awful things during pregnancy but then the baby turned out to be perfectly healthy.

I don't think this is doing me any good and I should face up to reality, but how do I do it? Or will it come in time anyway?

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emkana · 01/04/2006 19:37

Thank you.

I did feel a bit taken aback by CD's post, wondering if people started to think "Get over yourself, it's not that bad."

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FastasleepTheAprilFool · 01/04/2006 19:39

Most of us aren't thinking that em :) and it was probably worded badly or written at a bad moment, or maybe poor old CD's baby had something she sees as 'worse'... I don't know...

but don't for a second think that what you're going through atm isn't important or huge, because it is.

foundintranslation · 01/04/2006 19:40

Venting and talking about things is what MN's here for - see my thread below! and you have far much more reason to than me! Keep posting :)

emkana · 01/04/2006 19:46

It's not as if I could stop myself from posting anyway... MN is such a release valve (is that the right expression?)

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emkana · 02/04/2006 19:38

compo - I was thinking about counselling at some stage, but the midwife was useless when I asked her about it (she just leafed through the addresses at the back of the NHS pregnancy book you get for free - FFS I can read myself thanks very much Angry)
and I haven't had the energy to do anything about it since.
Don't really know who to ask.

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madrose · 02/04/2006 19:51

I really feel for you, you must be thinking about it all the time. Talking will help so much as 'putting a lid' on it will just let the anxiety build up. A dear friend had similar news at a scan, and had to have regular scans, which in a way added to the stress. It was if the doctors were preparing her for the worst, in the end her DD was very small, but fine.

The pregnancy was full of fears, and TBH it wasn't until my DD was in my arms - (a long time after the birth) that she felt real, the pregnancy itself didn't feel real, so your feelings are so right.

Sorry if none of this makes sense, but I wanted you to know that i'm thinking of you and sending you lots of [[[[[[hugs]]]]]]]

emkana · 02/04/2006 19:57

Thank you.

I am hoping soooooooooooo much that they made a mistake, but I'm not sure whether I should give in to that or not.

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bakedpotato · 02/04/2006 20:10

I am so sorry you're having to go through this. You need some support/context -- AFAIK, it should be there if you ask for it. Go back to your unutterably crap-sounding MW, or to the hosp where you're being seen, and push for urgent directions to a genetics counsellor (there's definitely one at my local hospital and I can't believe this is that unusual).
If you want the other sort of counselling, could you try try your GP/HV? I know asking for help takes energy and you must be feeling so low.

emkana · 02/04/2006 20:14

Sorry to be thick what I'm wondering whether a genetics counsellor would be any good for me? What would they do?

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bakedpotato · 02/04/2006 20:23

I was told that if I wanted to speak to anyone while waiting for amnio result/when it came through they could put me onto g/c... got the impression it was someone who could give us background/put stuff in context.
You sound like you have lots of unanswered questions, maybe there's only so much that anyone can tell you, but someone should be offering you some support.
It's terrible you've been left hanging like this.

madrose · 02/04/2006 20:31

bakedpotato is so right, make sure that your MW or doc's arranges someone for you to talk to. When are you due? sorry if i missed it in an eariler post.

Blossomhill · 02/04/2006 20:36

emkana - I do have a small inkling of what you are going through.

My dd (7 in August) currently being assessed by all sorts of people and looking at AS/Adhd. I still hope/pray she may grow out of it although know deep down this isn't the case (not saying this is the same as you).

Being in denial is your way of protecting yourself and is a totally natural thing to do.

Sending big hugs to you

Try not to be too hard on yourself. You have a lot to sink in and allow yourself to feel how you feel. Although agree counselling may be an option.

Take care Bloss xxxxxx

emkana · 02/04/2006 20:39

Baby is due on the 7th of June.

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emkana · 02/04/2006 20:40

Blossomhill, sorry you're having such a hard time. I hope things will get better, one way or another!

Sometimes I feel like I really need to talk to somebody, while at other times I feel like it's easier to just bury my head in the sand and ignore it all until he is born.

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ItalianJob · 02/04/2006 20:49

This reply has been deleted

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teepee1 · 02/04/2006 21:08

I would feel the way you do and I already have a very disabled child. Your feelings are normal.

I think you need to remember that at the moment you haven't met your baby, so when you think about it you think about the disability (I hope I don't offend anyone by calling achondroplasia a disability- I mean it in the social sense of the word) and the problem. Once your baby is born you will think of them first as a person and the problems afterwards.

The reality isn't the disability, the reality is the baby and of course you can't face up to anything yet as you haven't met your baby or seen what achondroplasia means for him or her. Once your baby is here you will find your feelings are the same as for your other children (maybe sometimes even fiercer as so much maternal love is about protection). The achnodroplasia will be secondary- I suspect your feelings about it will change with time anyway. Sometimes they may fluctuate wildly- that's OK as well.....

Blu · 02/04/2006 21:10

Emkana - You have such a lot to get through - you don't know what you are facing, whether the consultant is being cautious, etc, and it is a HUGE strain. I do think it would be worth a visit to your gp, and tell her how much stress and anxiety this is giving you, and asking for counselling. I spent a long period of my pregnancy not knowing what the eventual outcome would be, and the first few months learning to 'feel normal' about all the things we were finding out about DS's leg. For example, we had to decide whether to have his leg amptated or go for extensive and dificult surgery.

This took a HUGE toll, and undoubtedly contributed to my havng low level depression. If I knew then what I know now, (in terms of my mental and emotional state) I would have sought counselling to help me think through my thoughts and feelings and to help me save some energy.

Awful feelings, like not daring to see DS's leg as a problem, because that felt disloyal to him.

I imagine that achondroplasia brings with it very confronting feelings for you and your child. I have no doubt that the outcome is happy - as in the case of CD's friends, but that doesn't mean that the journey is at all easy for you, or that you should expect to undertake it alone or without support.

GPs routinely refer people for counselling, I think you can have 6 sessions on the NHS.

Your baby may well be perfectly typical, your baby may have achondroplasia, but either way the stress on you atm is enormous.

All I know is that consultants DO spell out the worst case scenario, because (sadly) they are afraid of being sued if they don't. This was told to me by a MNer who works in one of our most feted teaching hospitals. But i know that that is no comfort to you atm, and that in any case, you need to be prepared for a baby who has a difference.

But whether you get counselling or not, no-one is going to begrudge you as many threads as you need on MN, for as long as you need them.

Blu · 02/04/2006 21:12

x-posted with teepee - i think that's a great post, teepee.

fairyfly · 02/04/2006 21:14

Not read all of this thread....

I just wanted to post....

One of my mates is a "Dwarf"

His life is ace, he's absolutely no different to any other man i've ever met ( i.e. he can be a complete tosser)

emkana · 02/04/2006 21:24

Thanks to all of you for your posts, it really helps a lot to be able to come on here.

I think you are absolutely right, I was saying to dh last night that I don't feel most of the time like I'm having a baby, just like there is a "problem". All this has sort of removed me from my baby, which is saying something as I'm not great for bonding with my babies pre-birth anyway. Sad

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Moomin · 02/04/2006 21:29

I don't know anything much about the condition itself emkana, other than what i've read or seen. i think teepee's post was an excellent one though. I can see why you're apprehensive - you will love your baby whatever, and it's true that achondroplasia is not a barrier to a 'normal' life, but it just means that life will be harder for him in some ways than for others who don't have a condition that 'marks' them as different in society. we all want a life for our children that causes as little suffering as possible and we have to face it that there is much ignorance in society and you will need to be strong.

as i said i don't know much about it but i've admired the academic Tom Shakespeare for a while - he has this condition and I've heard him talk about how he has refused to let it affect his life adversely. Maybe if you feel up to it you could google him and read what he has to say?

it's still not a definite fact that your baby will have this condition - i don't think you're in denial, you're just hoping the predictions might be wrong and there's nothing wrong with that. I'm sorry if i've not been very articulate - i did wonder about getting rid of this post as i wrote it in case it was taken the wrong way but i would still like to offer my best wishes to you. all the best xxx

edam · 02/04/2006 21:37

Bonding schmonding, honestly, it's held up as some sort of 'must do' thing on a ticklist (buy first-stage car seat, organise someone to take eldest child, write birth plan, bond...). Bollards to all that. No-one's actually given you the chance to just be pregnant, have they? It's all been stress and worry. Well, sod them, even if they are well-intentioned. You need some looking after, sweetie. I know cyber hugs are naff and a bit inappropriate between stangers, but have a anyway on me. Bet your baby is absolutely gorgeous.

emkana · 02/04/2006 21:43

bonding schmonding...
that made me smile Grin

The whole situation is not really improved that my MIL who is normally wonderful at having the kids has been going through cancer treatment for the last few months, and dd2 is not settling in at playgroup, so I never get time to myself in the week. At weekends dh does give me opportunity to rest, but I also really value our time together as a family so I don't want to be on my own that much then.
And my dad back in Germany is deteriorating with his Alzheimer's...
2006 has not been an easy year so far, I know that much.

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harpsichordcarrier · 02/04/2006 21:50

I agree with blu - bonding schmonding...
I have been in situations which are similar but not the same - where I have been in limbo through several weeks of pg and not knowing whether the pg was going to continue
I found the only way to get through was to live for the moment/live in the day and try not to cope with too much at once.
I certainly don't feel like it affected bonding in either case
I think you should try to stop worrying as much as you possibly can
ime and in imo bonding happens when you meet your gorgeous baby and is not helped by putting any pressure on yourself
FWIW I don't think you are overreacting in any way. I think you're grieving for the loss of a "normal" pregnancy and the baby you were expecting - which is not to say that you won't love this baby in every way. But the loss and the grief is real and you need to be kind to yourself while it happens to you. and allow yourself to feel it.
HC xx

emkana · 02/04/2006 21:54

When I first found out it was a boy I thought "My goodness I will have to get used to that thought" - somehow thought before this pregnancy that I was destined to have three girls.

Then all this happened and I am going through the process of saying goodbye to what I had imagined would happen, like you say hc.

Dh is so good at just accepting the facts, I wish I could be like that.

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