I've just cried in front of ds's teachers.

[Spidermama]

I was sitting in a meeting room with his two teachers, a teaching assistant and the diabetic nurse who had come to explain to the teachers how they might be called upon to help ds in certain scenarios.

I was a bit wobbly from the outset, and midway through the meeting I had tears rolling down my cheeks.

They were very nice, but that made me worse.

I agree with Hausfrau - they would have been surprised if you hadn't cried. There's nothing embarrassing about loving your son and being upset that he's got to put up with diabetes.

((((hug)))

i was really tearful talking about ds's dyspraxia at his new nursery yesterday.

Oh, I have had parents cry with me, and fwiw I have almost bewen in tears with some of them

Last time was when a smashing family told me that their lovely son had had his nose broken by two feral boys from the school. I hadn't been told the news and when the mum started to cry, I damn nearly did myself.

Don't beat yourself up SM, your ds is lucky to have such a smashing mum.

On a lighter note I filled up today when I found out that a bo with ASD that I teach got three A* grades in his GCSE modular exams. Three years ago he needed 100% 1 to 1. Now he is working unsupported. I am so very, very proud of him!

Quite understandable Spidermama! I remember you writing about your ds's diabetes so recently.

I'm the red and blotchy sort of cryer! I cried with a parent recently when they were upset and trying to talk to me about their child's difficulties. Snotty hankies all round!

Aw, SM, you are only human and you are having a rotten time. I cried when I had to tell my boss I'd developed a chronic medical condition. V embarrassing but he was so nice to me it just made me cry even harder!

Thanks everyone for your lovely words. I've never known such support and I'm really grateful.
I've had a good cry reading them which is cathartic. He cried a lot at bed time tonight. He doesn't feel safe any more.

Pollylogos, if you would point your friend in my direction I'd be very grateful. I still don't know anyone else going through this and would love to talk to others.

Hi SunnyDelight. The coeliac thing is interesting. It's linked to diabetes. I took my son off wheat a couple of years ago because he was extrememly snotty all the time and did terrible farts (sorry) and it really helped. Now I'm wondering about coeliac disease.

Kitty his blood sugar is down to within reasonable limits now. They're expecting to have to tinker with his insulin dose for a few months yet though.

In the meantime we've yet to experience a hypo ... so we're kind of waiting with baited breath. The diabetes nurses say it would be perfectly normal to expect one or two a week. We're all bracing ourselves (teachers, ds and me).

Oh spidermana, about your DS not feeling safe anymore. Sounds like there's some all round hugs needed.

I've just spent the morning clearing 'essential for the next two weeks' tasks from my desk as I will be absent from next Tuesday, dd's op on Thurs then not knowing how she will be afterwards. I went to tell someone what I'd done but only got through half a sentence before I filled up and said' I'm just going to stop talking now and go home'.

Tonight I have an appointment with DD's teacher to pick up a work pack for when she is well enough to do some work but not to return to school or if she has to use the hospital school. I'll be taking a pack of tissues.

SueW I'm so sorry. What's the operation? How old is she?
You must be finding it hard to think about anything else.

They were fantastic in the children's hospital when my ds was there and are still very supportive now - which really helps.

I bubbled up again whilst out for coffee with a friend today.

My ds was born with a cleft lip and palate, and when he was around 6 he announced, just at the school gate, that some of the girls been teasing him about his 'flat nose'.

I went to see his teacher, and we both ended up in tears - as well as me about to commit murder!

fairyjay. Sounds like a nice teacher. Isn't it terrible when you know you can't protect them?

She was great - ds is now 13, and still says she was one of his best teachers ever!

And now he can cope with horrible girls, and put them in their place - had plenty of practise with his sister!

Spidermama, I don't know if you know, but DS has a short leg, with other complications. Usually, we all just get on with it, it is a fact of life, and mostly doesn't give rise to 'issues'. But as soon as I have to explain to anyone, or talk about his surgery, I just dissolve. Quite often, even with family and close friends I tell much less than there is to tell, just because of that feeling.
On Wednesday, the day before he started school, we had a v discouraging consultants appt, and this is the first time I have mentioned it to anyone, because I can only deal with it if I don't have to tell anyone.

I do know how you feel, even though that will inevitably make you feel wobbly. I think it can't be helped, I think we feel it on their behalf, and it isn't something i have felt has improved since our 20 week scn, so....buy tissues, learn that it usually IS ok to burst into tears. I have done it at work all over members of my staff, and in front of our Board. Also the manager of a prospective nursery. All have been really really good about it, and it has been fine.

In meetings specifically to discuss it, I have a notebook to take notes - very focussed displacement activity, I have written down q's, and I role play an attitude: intelligent enquirer, or whatever, to distance myself from it.

You really are not alone in this.

XXXXXX

Blu

I so know those feelings you are talking about. I'm either an intelligent on-looker in a 'business' meeting, or a crumpled heap.

I blame the trauma of - in our case - early surgery whilst still getting over the physical and mental impact of having a baby.

Having said that, at 13, I think that my ds displays and attitude and consideration that is rare, and much of this is to do with what he's been thru'.

Our lives carry on, and certainly I don't want to make his cleft an issue, but by the same token, sometimes I have to 'let go'. Even Mums are human, after all!

Spidermama,
Do ask about coeliac disease...I come from a
family of diabetics and coeliacs too and if
your son is coeliac life will be a lot easier
if you knew...the initial screening test is
just a blood test.

My brother was only about 7 when he was
diagnosed diabetic and I know there were
tears then - and guilt as he was 3rd
generation to be affected - he's nearly 40
now and leads a perfectly normal active life as
our father did before. The hypos certainly
made life interesting but everyone coped - a
sense of humour helped. We always laughed at
the situations that arose. We all knew what
to do from an early age and it was all just
part of life.

HTH

FairyJay: I'm really interested to hear how your ds is handling it, as a teenager. He sounds wonderful. I'm finding it quite hard atm, to find the right balance between not making an issue of DS's leg, and being pro-active to prepare him for some comments at school. He's only just realising that not everyone has a big foot and a little foot, or a shoe raise, and we have just started to introduce the idea, very very slowly, that he will have bone-surgery that will go on for a year.
Did you have any pre-info about DS's cleft before he was born? I'm SO pleased that we knew DS would not be 'standard issue', and it was no surprise in the post-birth maelstrom.

Sorry to go a bit OT Spidey, but hope this is a bit helpful.

Spidermama, I've had lots of parents cry with me and I've often joined in, particularly about illnesses and worse. As a teacher I'm never surprised when a parent crys, you love your kids more than anyone, if they hurt them so do you. I did have an early introduction to crying parents, the end of my first week in teaching, I'm used to it now.

Kate - thank you for that pov. It really helps.

Batters - see my 'January countdown' thread - I need advice!

spidermama.I too cried when ds's nursery teachers were having their epipen training.

Just the thought that other people are going out of their way to ensure his wellbeing makes me go all wobbly.

I wonder if it gets easier as we get used to it?

Oh Blu - he is such a fantastic boy, he really is. Whatever happens you know he will just thrive and have a wonderfully fantastic life. But my heart truly does go out to you.

Spidermama and batters, it's a re-do of an operation that she had in July 2002. Unfortunately that one wasn't entirely successful.

She has achalasia. Simplest way to describe it is the opposite of reflux so instead of stuff spilling out of her stomach because of a floppy valve, it can't get in there in the first place. The solution is to cut through the sphincter at the top of the stomach.

Because she's not as bad as she was back then i.e. she can kind of eat, I am finding it difficult to ocnvince myself we are doing the right thing. Then I sit down to a meal with her and see her in pain and I know we are. Then I think about the risks of the surgery and I'm sure it's the wrong decision. It's like a never-ending rollercoaster.

Without wanting to wish my life away, roll on this time next week.

Blu

We were told about the cleft at a 32 wk scan, and I am so so glad we knew - it gave us time to get over the shock, find out everything that we could, and the birth of our son was a celebration, and not the trauma it could have been, without prior 'warning'.

We started off answering any questions like 'why have I got to have another operation?' with 'everyone's born different, Daddy's got a big nose, Mummy's got fat legs and you had a broken mouth - but you're lucky, that can be fixed!'

Of course, the time comes where that is no longer answer enough, and I was quite matter of fact, and said that he was unfortunate, but there are many people who are more unfortunate. I also agree that it's not fair it had to be him, but it's just one of those things. I've also pointed out that what he has been thru' has made him a better person, in that he empathises with others.

Then I disappear off for a quiet cry!

I agree with you that it's largely a question of balance. I don't want ds to be defined by his cleft, but neither do I want him to shy away from answering questions, or feeling embarassed about it. Long shot I know, and as he enters these teenage years, I'm sure it will be one of many things he will feel insecure about.

At the end of the day, you love him to bits, and you'll be able to judge how to help him at different stages. It's just the challenge of keeping your own emotions under control, until you can let go (normally in the bath!).

How old is your ds? Would a nice 'reward' for each stage of surgery help do you think? We let ds choose a family holiday on the couple of years where he has had major surgery, which seems to work quite well.

Sorry to have gone on for so long!

I just want to add my hugs and virtual support to you Spidermama - and the others on here with real traumas. makes me very ashamed of the fact that I have cried twice in front of teachers at school on much more 'trivial' matters (altho they weren't trivial to me or my ds at the time IYKWIM!)
Hugs
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