Ds is on the 0.4th percentile for height now. It's really starting to hit home now that he's going to be a dwarf

[emkana]

I have all sorts of feelings which I can't very well put into words, so why on earth I'm starting a thread about it God knows.

Em - would you like to chat with my (online) friend whose ds has hypochondroplasia? He's 8 now. His mum has hypochondroplasia too. I'm sure she wouldn't mind.

Thank you, you are all beyond lovely.

Bero, thank you for your post, you made me well up again there, so stop that this instant!

saggars, that would be lovely! Maybe you could pass on my e/mail address? emkana at gmx dot net

Might be a bit off topic but the last novel I read was about the tragic life of Lady Jane Grey (who was executed). She had a sister who was a dwarf and in contrast to her sister, she had a happy life at home and was married. So even in those far off days, it wasn't always the case that the normal ones had the best lives.

emkana, so sorry you're feeling like this. Our boys sound so similar - we've talked about them before - although to my knowledge ds2 doesn't have a 'condition' for want of a better word. But he was born on 91st centile for length, and at last measurement was around the 25th. That was some months ago, and I don't think he's grown a huge amount since then. I am going to ask for a 2 year GP check for him, as there are various things that I want reassurance on - he was a VERY late walker (20+ months), isn't speaking much at all at 22 months (has maybe 10 words that are very unclear), is little (weight and height) and has the smallest feet in the world (size 3.5). I THINK he is probably fine, but just need reassurance.

Have you got your date for your xray? If you wanted to meet up for coffee or something afterwards, (especially if it's been stressful!) I live in Bristol - don't worry if not, but if I'm around and you'd like to then let me know!

What Moondog said.

Emkana - as the parent of a child who will shortly be having bone-lengthening, I would completely agree that building up his sense of self will be so much more valuable than building up his legs!

Huggy-type support.

Those realisation moments come quite thick and fast I think when your child moves out of babyhood and into toddlerdom. Suddenly it becomes so much more apparent that they are 'different'.

Unfortunately life as an SN mum is littered with little moments and pangs of realisation or sadness.

I usually find though that just when I am feeling low dd1 will do something amazing or cute or just smile at me and that helps keep me on track.

And one of the best bits of advice I was ever given is don't look too far into the future. It can be way too scary. And anyway, by the time you get there who knows what you will be able to deal with by then? Just think back 2 years or so and try and I bet you couldn't have imagined that you could have got to where you are now.

Is that him in your profile Emkana?? But.. but.. he was only born, like, yesterday!!!!

Emkana, he's so stunning!

Lots of hugs, can't add anything more to the fab advice that everyone else has given.

Bero, your post is lovely

Thank you all again, I can't put into words how much your kind posts mean to me and how much they help.

tortoiseshell, it would be nice to meet! Would you be able to meet me somewhere very near to the Children's Hospital? I'm not sure I'm brave enough to drive anywhere else in Bristol, I'm just glad I know how to find my way there!

I'm sure I could - dh works near there, so could meet you right there if you like. Do you know what day/time you'll be there?

tortoise, could you e/mail me and we'll arrange something?

emkana at gmx dot net

Emkana, I think I've told you about my friend before.

The one who is about 5' 1", has a PhD, size 4/37 feet, didn't 'settle down' until he was 40 due his travelling around the world, his numerous girlfriends !, wicked sense of humour, loads of interests etc

Size doesn't matter - personality does!

Emkana- I guess this isn't what you had hoped to hear, so you need time to come to terms with its ramifications.
We have just had child with dwarfism start at school and it has been wonderful to watch his progress. I don't think the other children see him as any different. Even at 5 they just accept each other at face value; some people need an alarm to remind them to go to the toilet; some kids need injections regularly, other children struggle socially or academically. This child is not treated any differently from any of the others excpet when a bit of special help is needed. The special chair is coveted from afar by the rest of them and they fight to sit as near as possible to its owner. Like your ds this child is blessed with good looks and a sunny disposition. I'm rambling a bit but just trying to provide some reassurance for the inevitable worries that you must have.

Emkana, don't know if you've ever seen the C4 programme, "Born to be different" but one of the little ones featured in it has a form of dwarfism, possibly achondroplasia but I may be wrong about that. Anyhow, the little chap has started school, is by far the smallest in his class but is the happiest, most popular little guy! They interviewed his best friend and asked him to describe his friend and he mentioned what a great personality he had, and how much fun he was and it never occurred to him to mention his height at all!
Also there is a girl in ds1's class, aged about 11 who is very much shorter than her peers and she just fits in with all the others and has a strong enough personality that she certainly doesn't get bullied. Unfortunately, ds1 thinks she's a bit of a pain but he thinks all girls are a bit of a pain at the moment!

chipmonkey, yes I've seen the programme. Weirdly I remember watching it before conceiving ds and being interested but unconcerned. Much changed then and last time I saw it it hit me right in the heart to see what was happening to little Hamish, as positive as it was.

Mercy and robinpud, it's really lovely to read these positive stories.

I felt for you when you mentioned reading about suicide rates among people with dwarfism. But you have got to keep in mind that your ds is himself, not a statistically representative sample of those thousands of others with various dwarfism conditions. There is no guarantee that he will react in the same way as somebody else, who may have a less supportive family etc etc.

My dd has a condition which has a much higher than average rate of depression, social anxiety, panic attacks etc etc. Have never seen any suicide statistics, but would be surprised if those weren't higher too. Yet it would be hard to find a person who is less socially anxious than dd. And this is an area where I feel we have been able to make a difference as parents. Noone is more important than parents for making somebody feel good about themselves, that feeling of being cherished and valued stays with you all your life.

There will always be "groups" of people who have a higher rate of depression/suicide. But look at all the positives, emkana. Your ds is gorgeous, comes from a lovely home and is well-loved by his parents and big sisters. A lot of people don't have that. You are doing a great job, he will have the confidence you will be able to instil in him and a minor matter of height won't be able to make much of a dent in that!

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Up there with the dentists, are you, oops?

@emkana I know this post is quite old, but i am really really hoping to get a reply from you. How is your son progressing in height? My 17 months old son - born 95th centile for height has dropped to 25th, then 0.4th centile by now. I am having sleepless nights thinking about this. Him being short is my last concern, GP has ordered blood tests to check his organ functions etc, then refer to an ENDO for any possible GHD. Just wanted to know if there is any tiny bit chance of this got corrected on its own.