as long as it is healthy...?

[Jokat]

Hi Ladies,

I'm interested to hear your thoughts on this:
My daughter was very premature and in connection with this has a form of cerebral palsy. She receives physio and occupational therapy, but is mobile and a very happy little thing.
I am pregnant with my second child and people often ask me whether we know what we're having, which we don't. They then go on to saying "Oh, that's nice, and as long as it is healthy, that's the main thing, isn't it?"
Instinctively, my first thought is that it doesn't matter whether it's healthy or not; after all, our daughter isn't healthy either and we're still immeasurably happy to have had her! Then I think: Despite her disability, isn't she healthy though? She's not on any medication and only has to see specialists regarding her physical issues. So, in a way she is perfectly healthy.
Sometimes I do say to people that whther the baby will be healthy or not doesn't really matter, as long as it can be happy in life, and at other times, when I can't be bothered to go into any details regarding my daughter, I'll just agree with people.
How do you perceive your children's state of health, are they healthy in your eyes as long as they don't have a bug, fever etc. or do you feel they're not healthy because of their challenges?

DS has AS, a speech disorder and co-ordination difficulties - he's healthy though, he's not ill...

I don't really know how I'd define unhealthy, but I don't think I'd class most disabilities as being ill health.

Mines healthy just in his own autitic way.

Yes I agree with you. And yet, when people say about a baby that's not born yet "as long as it's healthy" I feel like they mean "as long as there's nothing wrong with it". I think that's what I used to mean before I had my own...

it doesn't cross my mind that it really means - as long as there's nothing wrong with it as much as...I suppose the sex is not important compared to the grand scheme of things.

I mean, I love DS dearly and honestly (most days, lol) I wouldn't change him for the world, but I'm also so glad that DD is completely NT and doesn't have to face all the shitty stuff that he deals with every day... So I don't see any implied slight against him in saying as long as it's healthy, or even as long as it has nothing wrong with it, lol.

I imagine our answers will vary depending on what our child's specific SN is and whether it affects their health or not- some disabilities do.

Dd's disability does not affect her personality (apart from causing depression and extreme anxiety). So I could easily imagine her without it. But it is very painful and has a damaging effect on her health, because the sheer exhaustion of keeping her body together affects her immune system.

So no, I don't think I personally will ever be able to think of her as healthy or say I don't mind about her SN. She could be the same person- but much, much happier- without it. And she knows that.

I feel bad about this because it is not what we are supposed to say as parents of SN children, but I used to comfort myself with the thought that ds was NT. Until he was diagnosed with the same condition.

Obviously, I don't wish either of them hadn't been born- but to me, that's not the same as not wishing they could be cured. If they had been born with a hereditary heart condition I wouldn't see wishing them to be cured as in any way the same thing as wishing they had never been born- I feel the same about Ehlers Danlos. If there was a treatment I'd be right in.

But obviously that is going to be very, very different for parents of children with different SN.

I think that they definitely mean healthy to be not disabled. I agree with Cory really. Although I love my two dc who have disabilities. Not a day goes by when I wish they didn't have those disabilities as they have such a massive impact on them and on me. When I was pregnant with dd2 the only thing I cared about was whether she would be ASD or not and we agonised for a long time about whether we should have another child. That said, not everyone will feel the same and that's fine too. This doesn't mean I don't find it irritating when others imply this to me or feel sorry for me because of my dc's disabilities!

Yes, my DS has ASD but apart from being really skinny due to self-restricted diet and always being on the go (which is due to hypo sensitivity) he's perfectly healthy. I'm afraid that I do think we are lucky, because he is not in pain and doesn't have any life limiting conditions, unlike some of his friends. It seems like another step along the SN path, to have a condition that makes you 'unhealthy,' something even harder to come to terms with. But we don't generally score points with our children's SN and all are equally welcome (hopefully) on this board, at least.

Jokat, My Ds was also premature, and also has CP, and at the moment has weekly physio. When that's all he has when others say happy and helathy I think yes he is healthy. He may have CP but he's healthy. Before I had him I think I did take happy and healthy to mean happy and not disabled in any way. But I think we all change the goal posts as things go along. A friend who also has a prem, but whose prem does not have CP reminded me that i spent weeks worrying that DS didn't smile, and I kept telling myself so long as he smiles... Then when he did it was so long as he can be independent, then when they said CP I thought well does it matter if he can't walk until he's 3 or 4 and needs a frame to get there, now I want him to walk but 2 or 2 and a half (corrrected age) and preferably without a frame.

I think what i am trying to say is what I define as healthy always covers DS, but I always setill want him to just be able to do the next thing (well as well as learn to ride a bike one day).

When he was in hopsital with HIB pneumonia in mid June I didn't think he was healthy then, and then I didn't care about anything apart from him not being ventilated again...

And that makes me think that the way I deine helarthy, happy etc varies depending on the place I am in at the time. Very sick and on oxygen was ok, but only because they were threatening DS with PICU and ventilation. When they stopped threatning him with ventialtion then I wanted him back without oxygen, then eating feeding etc, and I now want him off the drugs..

but once again I think I am wishing for the magic wand.

Jokat how old is your DD, and is she looking forward to being a big sister...?

"I am pregnant with my second child and people often ask me whether we know what we're having, which we don't. They then go on to saying "Oh, that's nice, and as long as it is healthy, that's the main thing, isn't it?" "

When pregnant with dd2, we found out at the 20 weeks scan she was missing her hand and I could have said exactly what you wrote above. It was good in that it gave me an opening to say "well, actually there is something you need to know". Because I really wanted people to know before rather than having to explain afterwards. But I grew to hate the phrase because it seemed to stand for such an attitude in people that anything wrong wasn't acceptable.

Oh what an interesting thread. DD has rare chromosomal disorder, which results among other things to small stature, but has no health issues per se if this makes sense. We only told a few close friends to avoid labelling, and I always choke when I get this reply in return to why she is so small. I feel I lied when I say "yeah", but then I don't want to tell just anyone about her condition.

People just don't think. It's a standard reply just as "How are you" when nobody is really interested in how you are. But I don't know how to reply to express my frustration without giving up cover.

DD was also very prem and has CP. Weekly physio, OT assessment, becoming mobile, etc. It's a small world...

To me she's healthy. During asthma attacks, I still don't see her as unhealthy, more as unwell.

I think people say 'As long as it's healthy' without actually thinking about what it means and most probably mean nothing about your daughter. I think it's just 'one of those things' that people say if they can't say 'Oh lovely, one of each' or 'Oh that's nice, you can reuse DD's clothes' etc.

It is uplifting to hear that many of us are able to regard our kids as healthy despite their problems but am also very aware that a lot of it depends on whether they are in pain etc.
Glimmer and Galena I do think that people who say "as long as it's healthy" use it as a standard phrase to do a bit of smalltalk or use it like "How are you?" when they don't actually care to get more of an answer than the standard reply "Very well, thank you." It's funny how your perspective on these things changes with your personal circumstances :-)
Hilda I also find that I frequently re-define what's acceptable to expect in terms of my daughter's progress. (I am being rather optimistic though with my hopes for her riding a bike and being able to ski one day, but you never know :-))
DeWe I know exactly what you mean, I find it frustrating when people seem to judge that a child that's not healthy (whatever they mean by that) isn't as "wantable" as a healthy child, even though I know that they probably just don't think about what they're saying.
For those of you who wanted to know: My DD is now 2 yrs 8 mnths but was 11 weeks (2.5 months) early. She started with physio and was diagnosed with spastic diplegia (in her first session) when she was 13 months corrected age. So far, she seems to like the fact there's a baby on the way. She often tells me to lift up my top and then talks to the baby, telling it about what she's playing, what we're buying in the supermarket (in the baby isle the other day she demanded to see the bump and then told it that we'd just picked up some nappies for it), so it's all good so far. Let's see what she's like once the baby is actually there and she realises we can't give it back!
Hilda and Galena, how old are your DCs and what kind of cp have they got?
Everyone thank you for sharing your thoughts!
Oh, and something else that some of you might find helpful: The other day in the supermarket I had two members of staff (one right at the entrance and the one at our till) smile at my DD, who was walking briskly with her funny walk and her arms raised a bit to keep her balance, and ask: "Aaw, is she just learning to walk?" For an easy life I would have liked to just say "yes", but then I felt it wouldn't be fair to Leila not to acknowledge her massive achievement in public. So I explained both times that actually she's been able to walk for quite a few months but that she has cerebral palsy and therefore her walking style looks rather different, is marked by her balance problems etc and how well she's done to get to this stage. Afterwards, I did feel a bit odd though having told two complete strangers about DD's issues and I found the prospect of finding myself in this situation over and over again in the future quite uncomfortable. Having then told our physio about this, she suggested I should look at it as a good thing because I'm actually educating the public about cp. Lots of people think of a child having cp as a skinny, drooling child in a wheelchair with vacant eyes and twisted limbs. Few realise that this condition (just like so many others) has countless facets and affected children can still be full of life and happy and achieve all sorts of things. This has given me a new perspective and I now feel quite happy to tell strangers about Leila's condition. If I can broaden people's horizons, that can only be a good thing (as long as I manage not to compromise Leila's privacy), don't you think?

To be perfectly honest you are just reading into the statement too much, I?m sure they mean to say as long as you?re happy with either and the fact that it's a baby that?s all that matters no?
my dd1 was premature but only by 5 weeks although she was ectopic baby(3lbs),
ds was 4 weeks early elective c section in case it was another undetected etopic preganancy, but has asd but both perfectly healthy.

I think it means 'as long as it's not ill or disabled'. Let's face it, how many people actually want their baby to be born with a disability? Very few I'd guess and I certainly didn't. And when we have disabled children, and we learn to accept disability and then embrace it, with all it's challenges, it's unbearable to hear the negativity that surrounds our children, especially when that negativity usually comes from people who know nothing about disability.

We learn to be positive but it's hard as we are surrounded by negative images and a negative social history of disability. Very few of us get enough help to lead good lives either, and I would struggle to say that life with my severely disabled son has been good. It's been enriched, but it's been hard.

Most people don't think twice about saying, 'as long as it's healthy'. If people said, 'as long as it's white', there would be uproar. We have a long way to go

I used to feel the same way as you, OP. 'As long as its healthy' means 'As long as there's nothing 'wrong' with it'.

I would get really fed up with people saying this, as it's such a throwaway comment, and crass in the extreme when you're standing there with a disabled child at your side!

i used to answer back: 'No, so long as it comes out alive, I'll be happy,' or 'Healthy or not, we'll love it just the same!'

My mum would get really cross with me as it was usually her friends (who were all aware of DS's ASD) who said this!

To me, saying "I want my child to be healthy above all" is not the same as denying that "we'll love it just the same".

When I say "I wish she was not disabled" I am not thinking about my feelings but about hers.

I am sure dh would love me just as much if I lost the use of my limbs or was in chronic pain. But if he ever said "It wouldn't matter if cory was in a car crash, because I would love her just the same", then I would find that a bit odd.
(no, rephrase that, I'd be filing for divorce)

So I can hardly say anything along those lines about dd either.

But I do realise that different conditions would elicit a different response and mine is entirely based on the fact that dd has the same level of consciousness and awareness as I do.

I agree with cory. I would love a DC just as much, but given one wish for my DC it would be 'good health'.(When my DS was seriously ill I vowed never to worry about anything else again because any other problem could be fixed but health can't always be fixed-even if you have billions)

Its one of those phrases which you see through different eyes once you have a child who is perceived not to be 'perfect' isn't it. But there are phrases which used to bug me with my non SEN children - people used to say 'is he good' by which they meant 'does he sleep well' Well no they didn't sleep hardly at all but were still lovely! But that used to rile me as though a baby who didn't sleep well was bad.

Then my MIL would always say of DS2 who arrived super fast "DH delivered him you know" and I thought bloody cheek I delivered him, I carried him for 9 months, I got the stretch marks and the buggered up pelvis DH just caught him on the way out! No way is he getting the credit.

zzzzz - you brought tears to my eyes! Thankfully my DD never had any significant setbacks during those first seven weeks in hospital after her birth, but I know the overwhelming feeling of needing to touch her and wanting to have her home with us. And like amistillsexy said, at the end of the day you just want them to live! Of course we all wish for our children to be healthy and to have the best quality of life possible, but the more awful the state your child has been in at any point, the more drastically your perspective changes on what's relevant in life and what's reasonable to ask for.
Agnesdipesto - it really bugs me, too, when people rate children as good or bad just because they take up more or less of our time or energy! It implies that children intentionally keep waking in the night, show jealous behaviour towards another sibling, feed little but often etc etc just to annoy us! If only people chose their words a bit more thoughtfully sometimes - incl. puffed-up MILs

Jokat, my DD is 2.3, was born at 27 weeks and also has spastic diplegia. Hers wasn't picked up till last month though... She's just starting to walk with the odd little walk and the arms up for balance.

I do tend to be quite open with people if they comment on her walking. I just have to grit my teeth when people tell their younger, more mobile children to 'be careful of the baby'... She's still tiny (9-12 month clothes) and crawls most of the time. Oh well, one day she'll both grow and walk!

Galena oh bless, size 9-12 months... She'll get there! Mine has been in size 1.5-2 yrs for almost a year now. She's not even much shorter than her peers, but so slim! She's just come out of nappies and now without those on even the newly bought size 1.5-2 yrs leggings slide off her bum. I end up putting only those from last year on, they've been washed so often they are a bit more snug round the hips :-)
How great that she is walking now! Leila took her first steps last September, but it took her several months before she had the confidence to actually make use of that as a means of getting from A to B. I didn't realize beforehand that not only will she walk later than her peers (it's such a blessing that she was lightly enough affected to be able to do it at all), but that the process of getting proficient at it will also take much longer. But we don't mind, we're just chuffed whenever she progresses a little bit more, however small the improvement :-)

Jokat like you my dd was born 9 weeks prem and has cerebal palsy spatic diplegia. She is now 9 her sister is 15 months younger and I have been asked if I had know she had cp would I have had another child. Of course I would in my eyes they are both healthy, one has a funny walk (wears leg splints). The other has a gap in her teeth. I some times have problems thinking of her as disabled because she is able to do most things. Can't ride a bike or skip but like she says "don't want to any way".