north of the border - bulging bumps and bonnie bairns!

[weeonion]

folks - thought it was time for a new thread with a new title for all those whose LO are out! i thnk we shoud be aiming for a meet up in May / June?? - what do you reckon?

Oh Vio, you sound so sad . I'm glad you've been put in touch with someone who knows how you're feeling and has been through it all; I'm sure that must help a little. As you say, you'll always be James' mum, whatever the future brings, so I guess you have to hold onto that and take each day as it comes. How is Martin doing? Does he have people he can talk to as well?

Wanted you to know I've arranged a tea party with some of my friends and their kids to raise some money for Debra during their fundraising week. And I'm sure the MN gang will think up something more we can do to raise awareness and hopefully some cash. I wish there was more we could do, but hope it might help anyway.

Take care - thinking of you all.

good evening folks and hope you all had a good n=bankholiday.

vio - come on here and let your feelings out whenever you need to. you have alot to cope with and whilst there may not be alot we can do - at least we can listen. xoxoxo you 3 are in my thoughts alot - i have also spoke of EB to others and i know that debra has recieved some donations because of james and yourselves. i hope that when we have another meet up - you can come along?

i have met gmm, tull and anjo - so we shoudl meet up. i will be the one with the hair that has yet again ended up too too bright an orange. when will i learn not to experiment with new shades!
midnight - i was intereste to hear that you will be using a papoose. i am struggling with my ringsling - do you know anything about them?????

also - hope none of you mind - i will be bringing along flyers for the nct as they are looking for peopel to train as antenatal teachers. i am going to do it and wondered if any of you fancied it....

Its hard to think how much life changed in just a month..James was born on 28 Apr, hes now a month old....I was convinced that everythings going to be fine...my pregnancy was healthy and I never smoke or drink....I even paid for a private scan and a 4D scan just to make sure everythings fine. I attended antenatal classes cos i wanted to be prepared and wanted to know how to cope while in labour....I could only do so much....life is ridiculous...everything just ended up wasn't the way i thought it would be.....i ended up with an emergency C section after a painful induction but then when i heard he cried..they said..babys out...then they showed me James...he looks alot like me...hes a fine baby, i felt relief..its worth the pain..James finally arrived..my husband cried and i cried...our son finally arrived...then they told me...hes a big baby..weighing 9 lbs..the biggest they delivered that night..we both smile..we were probably the happiest people on earth I thought..then 5 mins later...they discovered somethings wrong....3 days later..we were told that hes likely to have a disorder called EB?? i didn't know what it was but i knew its something pretty serious.......then my world stopped.

I remember it was when they said to me that they need to take a sample of his skin...a skin biopsy...I then asked...i know its a serious disorder but its not life threatening right? the EB nurse said to me..well,..it could be sometimes...then I started crying ( i was feeding James and i just couldn't continue ..i needed to pass James to my husband cos i just couldn't stop crying.

It took nearly 2 weeks to get the result back as it was sent to London....the 2 weeks were the darkest period in my life...knowing my son is suffering from a very serious disorder...hes going to be either suffering from this disorder for the rest of his life...probably 30 or 40 years but will still die eventually or hes actually suffering from the most severve form of EB and he probably would not live very long...I remember looking at the sky...it was a blue blue sky but i didn't think it was blue...it was grey and the world was dark.......James stayed in Yorkhill for nearly 3 weeks...every morning when we drove from home to Yorkhill..i watched people on the street...people were on their way to work..the world didn't stop ....unfortunately..my world has....i couldn't hold my tears...i thought to myself..how lucky we are..there are people who just weren't given the chance to live happily from day one...( well, actually he suffers while hes still in my womb)...the pain is just too great for anybody to understand.

When I first saw his blisters ...i cried...i just couldnt believe it...my son is a baby...this cannot be happening...then i learned how to pop his blisters...it was heartbreaking......his condition is getting worse each day and the day when i changed his mitts...his tiny nail fell off...it was hard...i couldnt sleep that night...i kept thinking..how painful would it be if my nail fell off??? James is my sweet little baby...i am watching him suffers but i could do nothing about it....we cannot fix it.

How do you live with the fact that your baby is going to go ??? don't know..sometimes i feel empty...most of the time i just feel numb...and how would i cope when hes finally gone?? don't know...there are so many questions in my head but most i just cannot find an answer .

I dont know if i have the courage to do it again..knowing that theres 1 in 4 chance of the same happening again...life is so bitter...I wish James is a well baby so i can hug him...give him a cuddle.....I had a dream before.....he was a well baby and i played with James..i lifted him up and gave him a lot of cuddles...then i woke up in the morning....god knows what time it was in the morning..it was still dark though...( james was still in the hospital then )....i cried myself to sleep again...knowing its only a dream...hes not a well baby...theres only one thing missing in his body and thats going to cost his life.

Debra put me in touch with a woman in Scotland who lost 2 baby girls...they both had JEBH...we spoke on the phone this afternoon...the disorder is so rare that the last person in Scotland who got a JEBH baby without knowing it was nearly 7 yrs ago...I asked her about the final days ...she told me that you will know when the time comes...we both cried...she told me that she could finally hug them ..the girls could finally wear what she wanted them to wear...without having to wear just a babysuit inside out...and finally gave them alot alot of cuddles cos she couldnt hurt them anymore...we cried on the phone.

I do feel gulity sometimes though i know i shouldnt cos i didnt know i was a carrier but then every time when i change his nappy and his dressings...i said to James..sorry James..mummy knows you are in pain but..i am just very sorry.

James changed my world...my life...perhaps he has made me a stronger person...I have been telling James...mummy loves you so much...you can never be replaced......you are part of me and part of daddy...we love you....he is going to go...well..its very painful....

Vio- you are going through more than any woman or parent should ever have to go through. My heart goes out to you, your partner and your dear little boy.

I'm so sorry Vio. Like you I was thinking that it seems like an age ago that you were getting fed up with being overdue and willing James to be here - your whole world has changed since then.

Like everyone else here, I think about you and James a lot. Life is so unfair, you sound like such a lovely person and James a wonderful wee boy, and it's awful that you're all going through this.

Was thinking of you today, Vio in a shop selling butterfly badges for Debra. What a bitch of a disease it is, where a mother can't cuddle her baby . Wishing you and you wee boy love & strength. xx

see you all tomorrow folks??

Yes, see you at 2.

Pics of me on my profile. I'll be the one with the long haired baby and micralite pram.!

Tom and I still have colds, so probably won't be there tomorrow. If we do venture out I have long hair and glasses and a red Micralite.

yes, see some of you later on! x

Vio...I don't "know" you, but as a "due in June", lurked quite shamelessly all over the April threads waiting for birth announcements. My heart goes out to you and your family and I can only guess at what you must be going through. James sounds like a terribly brave little boy. ((((hugs))))
I hope you and your DH are getitng some emotional support to help you cope with this terrible illness.

well folk s- lovely to meet you this afternoon and take up a piece of princes square! sorry i didnt get to chat propely to some of you - especially midnight and loulee. maybe next time we could do it outside so we can sprawl and let the wee ones roll / run about??

i will follow up on those couple of things we talked about and let you know. if you dont nind - could you send me your email addresses so i can let you know what i find out?? L dot thompson773 at ntlworld dot com

have a good evening

Lovely to meet you all too - sorry a bit distracted by roaming ds1 to chat very much! He needs to be contained, or possibly tethered, at the moment, bless him. We are looking for a place with a garden, and a gate . Anyhoo, outside venue for next meet-up a great idea. Preferably one with puddles.

In consequence, I have no idea what you're talking about WO, but will email you anyway and you can let me know.

dear folks - i have been looking at the debra site - hr eis some things coming up that we could maybe do in honour of wee james?? the first is the cd sale??

Donate your unwanted CDs to S.K.I.P. Rocks: 16 June
East Lothian based Special Kids In Play (S.K.I.P.) have organised music and dance workshops for local children including families with EB. DebRA has been invited along to raise funds and awareness on Saturday 16th June 2007 at Meadowmill Sports Centre, Prestonpans.

If you would like to donate any unwanted, good quality CD?s to be sold at this fundraising event, please send them by 8th June 2007 to:

Rita Chapman

Health & Social Care Administrative Assistant
DebRARex House
103 Bothwell Road
HAMILTON
ML3 0DW

For more information, please contact Rita Chapman on 01698 477777 or email [email protected].

Race Night: 14 July

On 14th July 2007, a race night is taking place at Hamilton Race Course. For more information please contact DebRA Scotland on 01698 424210.

Butterfly Ball: 27 October
This glamorous annual event takes place on 27th October 2007 in Glasgow. For more information please contact DebRA Scotland on 01698 424210.

Hi all, yes lovely to meet some of you yesterday and sorry I didn't manage to catch up properly with wee onion + trixy - maybe next time??
So agree Midnight about the garden thing - we are desperate to move somewhere with a garden - just can't work out where....
Wee onion, thanks for posting the Debra links - the cd sale is a great idea - will try to root some out over the weekend

you should all move to uddingston - its great here!!!

have copied your post onto the original post that i started WO in a hope that we will get the MN regulars behind this too

HI - was lovely to meet up with everyone on Thurs and see all the beautiful babes. Great to see everyone so comfortable and confident in the new mummy roles - gave me hope that I will actually cope too!Look forward to al fresco meet next time, hopefully some nice weather coming our way.

Am liking idea of CD sale - we have stacks that never listen to so will have good clean out this weekend. Race night sounds like good idea too. Thanks WO for finding out the info.

hi tulla! it was lovely to see you as well- hoe you didnt feel so outnumbered by bairns to bumps. you looked great -- relaxed and chilled. it is exciting having another baby to come - wonder what you wll have! you will do absolutley fine and before oyu know it - there will be another one to join us when we meet up in the park!

Thanks.

BTW, meant to say thanks for the coffee Loulee - my shout next time .

Having a househunting weekend - avoids having to face the DIY we'll have to do before we sell, but v depressing seeing all the places we can't afford to buy. Hope you're all having a more restful time, esp Tallulah.

was lovely meeting everyone!!!

we are definately up for the race night, it isnt very far from us, we went last year and there really is a great atmosphere, especially if the weather is good.

hey folks, just had my first time away from aoimhe. went intot town to return some clothes (they wont fit over these boobs!!) and farser looked after her. felt v v weird and i had to resisit texting to see if they were ok. they wer fine - grooved all afternoon and listened to music.

i am also up for a night atthe races and have my eye on teh ball in october. excuse to get glammed up..

midnight - goodluck with the househunting. where are you looking - in glasgow or outside of it?

www.bbc.co.uk/scotland/whereilive/breathing_places/

If anyone is interested, bbc2 springwatch festival at kelvingrove park on saturday.

It's scary leaving them for the first time, isn't it? I remember when I went out for first time when Sam was small, texted home to see they were OK and DP texted me back to tell me they were playing cards for money.

Househunting - if only we could decide where we want to live that would make it a bit easier. Helensburgh this morning looking at an overpriced hovel and then back in Glasgow this afternoon.

midnight - our dp must think alike. when i called him from teh bus home - he said they were just packing up the poker school and getting the local gangsters out the door.