Re: Hi there lovely people

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Hi there everyone, Shena here from Derby UK

Have been reading posts with interest and wanted to share a bit of our experience.

Evie's experience with other kids has ranged from questions like 'Are you blind?'(this was before she had her slings fitted at age 6) to more abusive name calling (which I won't repeat here, suffice to say it was very distressing) which happened about 18months ago when she was 8. The latter was taken very seriously by the school and the perpetrators were punished. I think this helped Evie to realise that she did have support at school and that it was okay to ask for help when she couldn't handle the situation herself.

Following our trip to London to meet with lots of you lovely people with BPES and your families, Evie and I had a very open discussion about how she deals with comments and looks from others (and this was all news to me). Apparently when she notices other kids staring she asks them 'Are you wondering why my eyes are small?' and then proceeds to tell them that she was born that way, has had an operation to fix them and leaves it at that. This works very well for her and I'm glad she has the confidence to do this.

For myself, I have found it quite hard in the past to deal with some of the reactions from people and even now when I notice people staring or doing a 'double take' I feel incredibly protective towards my gorgeous girl. I also used to feel angry too but that doesn't happen anymore.

One final thing - Evie (who's nearly 10 and practising like mad to be a teenager like her big sister) has a great sense of humour and when I was putting her to bed the other night she said 'Mum, if I want to flutter my eyelashes I have to lift my eyeybrows up and down like this........' and proceeded to show me, with much hilarity how it would look if she tried to bat her eyelids at a boy. We both agreed it wouldn't have the desired effect!

I feel so proud of Evie and the way she deals with things, it helps me to put things in perspective I can tell you.

Love to all

Shena

blepharophimosis Hi Clare and all

Hi Clare, and everyoneWe are all fine thanks. Kirsten started standing on her leg 7 weeks after breaking it and now 11 weeks later is walking instead of crawling. Her little calves are so wasted they look like sticks! She was scheduled to have her Y-V canthoplasty at the end of June, but Mr Collin is now out of town on that date and it has been brought forward to the 27th April. It suddenly seems so soon and I am getting the usual pre-op jitters together with being pleased that the ball is rolling. There are now 3 families in/ near Harrogate (Hi Nicola!) I have been introduced to a mum in Harrogate who has a child with BPES. We had a lovely long phone chat and will be meeting up after the half-term break. What a small world we live in! I was bowled over by how gorgeous Emy is when I met you both in London. I am praying that Kirsten's surgery has as good a result.Take care> > >> > > > > > WOW! You've got a big heart, to offer up an explanation to > > people who even have the nerve to ask you about Aedan's eyes, my > > hats off to you.> > > First - you owe no one an explanation about your child's eyes > or > > nose or feet and to even take the time to explain any reason for > > them is detrimental to Aedan and your self.> > > That's why he needs a machine to stop the idiots from asking > > mommy stupid questions, he feels embarrassed and he is very aware > of > > what's going on.> > > If you continue to address questions about his eyes he will > > withdraw and not enjoy being in your presence in public, we all go > > through the idiot questions sometimes it's better to walk away .> > > Second - every thing he believes in will come from you, the > > stronger you are the stronger he will become your only as strong > as > > your weakest link. > > > Third - explaining to him in a manner a child can understand > > about his eyes and the need for surgery and then ending this cycle > > of explanations and excuses to stupid people who have no right to > > even think they can ask.> > > Finally (when you can't walk away) learn to divert stupid > > questions especially if your son is in your presence, if the lady > at > > the check out counter asks about your son's eyes ask her (how much > > was that).> > > She will get the message. > > > > > > I'm sorry if I sound a little upset, I remember how much I > hated > > being with my mother in public. Every time I started feeling good > > about my self some idiot would ask about my eyes and I became > > embarrassed when she started giving reasons.> > > I was comfortable with my eyes, it gave the impression she was > > not!> > > My father always had his mean face on in public no one asked > him > > anything and if someone dared to ask, he would ask them ("is that > > any of your business").> > > So guess who made me feel good about my self and who I enjoyed > > being in public with.> > > > > > > > > > > > ---------------------------------> > > Brings words and photos together (easily) with> > > PhotoMail - it's free and works with .> > >> >> > > > > > > >

[Guest guest]

Hi Shena lovely to hear from you. you are absolutely right Evie is the most amazing confident girl. She just deals with it, that is a lot down to you too! I think that's why her and emy got on so well. Hope all is well with you, i'd love to chat. love clare xxxxxShena Lawrence <shena.lawrence@...> wrote: Hi there everyone, Shena here from Derby UK Have been reading posts with interest and wanted to share a bit of our experience. Evie's experience with other kids has ranged from questions

like 'Are you blind?'(this was before she had her slings fitted at age 6) to more abusive name calling (which I won't repeat here, suffice to say it was very distressing) which happened about 18months ago when she was 8. The latter was taken very seriously by the school and the perpetrators were punished. I think this helped Evie to realise that she did have support at school and that it was okay to ask for help when she couldn't handle the situation herself. Following our trip to London to meet with lots of you lovely people with BPES and your families, Evie and I had a very open discussion about how she deals with comments and looks from others (and this was all news to me). Apparently when she notices other kids staring she asks them 'Are you wondering why my eyes are small?' and then proceeds to tell them that she was born that way,

has had an operation to fix them and leaves it at that. This works very well for her and I'm glad she has the confidence to do this. For myself, I have found it quite hard in the past to deal with some of the reactions from people and even now when I notice people staring or doing a 'double take' I feel incredibly protective towards my gorgeous girl. I also used to feel angry too but that doesn't happen anymore. One final thing - Evie (who's nearly 10 and practising like mad to be a teenager like her big sister) has a great sense of humour and when I was putting her to bed the other night she said 'Mum, if I want to flutter my eyelashes I have to lift my eyeybrows up and down like this........' and proceeded to show me, with much hilarity how it would look if she tried to bat her eyelids at a

boy. We both agreed it wouldn't have the desired effect! I feel so proud of Evie and the way she deals with things, it helps me to put things in perspective I can tell you. Love to all Shena blepharophimosis Hi Clare and all Hi Clare, and everyoneWe are all fine thanks. Kirsten started standing on her leg 7 weeks after breaking it and now 11 weeks later is walking instead of crawling. Her little calves are so wasted they look like sticks! She was scheduled to have her Y-V canthoplasty at the end of June, but Mr Collin is now out of town on that date and it has been brought forward to the 27th April. It suddenly seems so soon and I am getting the usual pre-op jitters together with being pleased that the ball is rolling. There are now 3

families in/ near Harrogate (Hi Nicola!) I have been introduced to a mum in Harrogate who has a child with BPES. We had a lovely long phone chat and will be meeting up after the half-term break. What a small world we live in! I was bowled over by how gorgeous Emy is when I met you both in London. I am praying that Kirsten's surgery has as good a result.Take care> > >> > > > > > WOW! You've got a big heart, to offer up an explanation to > > people who even have the nerve to ask you about Aedan's eyes, my > > hats off to you.> > > First - you owe no one an explanation about your child's eyes > or > > nose or feet and to even take the time to explain any reason for > > them is detrimental to Aedan and your self.> > > That's why he needs a machine to stop the idiots from asking > > mommy stupid questions, he feels embarrassed and he is very aware > of > > what's going on.> > > If you continue to address questions about his eyes he will > > withdraw and not enjoy being in your presence in public, we

all go > > through the idiot questions sometimes it's better to walk away .> > > Second - every thing he believes in will come from you, the > > stronger you are the stronger he will become your only as strong > as > > your weakest link. > > > Third - explaining to him in a manner a child can understand > > about his eyes and the need for surgery and then ending this cycle > > of explanations and excuses to stupid people who have no right to > > even think they can ask.> > > Finally (when you can't walk away) learn to divert stupid > > questions especially if your son is in your presence, if the lady > at > > the check out counter asks about your son's eyes ask her (how much > > was that).> > > She will get the message. > >

> > > > I'm sorry if I sound a little upset, I remember how much I > hated > > being with my mother in public. Every time I started feeling good > > about my self some idiot would ask about my eyes and I became > > embarrassed when she started giving reasons.> > > I was comfortable with my eyes, it gave the impression she was > > not!> > > My father always had his mean face on in public no one asked > him > > anything and if someone dared to ask, he would ask them ("is that > > any of your business").> > > So guess who made me feel good about my self and who I enjoyed > > being in public with.> > > > > > > > > > > >

---------------------------------> > > Brings words and photos together (easily) with> > > PhotoMail - it's free and works with .> > >> >> > > > > > > >

[Guest guest]

Evie your my hero, thank you for being a strong and confident young

lady.