Flying high enjoying their wings, Remembering our precious much loved children...

[CazandBelle]

For my beautiful Anabelle Violet. Born an angel.

Mummy and Daddy miss and love you so much. Always. xxx

So glad you came to our 'mad house' but so sorry that we had to meet here. Feel free to say whatever you want here - angry, sad, happy - whatever - nobody will judge you and there will always be someone around who has a good idea of your feelings, emotions and thoughts.

I would love to hear more about your daughter. Just whenever you want to - my twin baby boy had serious heart problems that eventually caused his death.

xxxx

Shabs...... Our phone message on our home phone says "Welcome to The Jenkins Madhouse!!" I think it is contagious!!

my girlie had 5 lots of surgery and her complex condition meant that she was treated in a top london hospital so spent a lot of time away from home. She elected ti have her final surgery as her condition was worsening and they did not hold out much hope without surgery. Her system could not cope with the new demands on her lungs and she died after 5 long months in hospital and a battle that was an inspiration to watch. I lost my whole focus for the past 24 years when she died and am finding it so hard to cope at the moment

With apologies if you said on your thread - when did your DD die? My little boy had a large hole in his heart, a smaller hole, massive problems with his pulmonary valve and the arteries in his lungs weren't growing. He was such a little fighter. Was your DD born with her heart problems? She sounds very brave. Did she have a partner? OMG I am very, very nosey xxx

She sounds so brave. I don't think I would be that amazing facing such a frightening time in hospital, I'm 25, so a simular age to your daughter. I feel so sad for you. I'm sure you're very proud of her.

I can relate to the feelings of being lost, although I realise it must be very different for you. 12 months ago I thought I knew what to expect from the next X amount of years and being a Mummy, and now its all hazy and very frightening.

The best advice I was giving was from Shab - to keep putting one foot infront of the other, to survive the minutes, hours, days. Its ok not to cope. We all go through times like that. I was particularly bad over new year, but have reached a calm place again at the moment.

It really is a rollercoaster, calm highs and very turbulent lows.

Have you thought about counselling? I've been going to a counseller since September, and although I'm not always 100% convinced by it, I do find it helpful to be able to say whatever I want to without judgement. to get it out. same as posting here. this thread had been a wonderful support this last 7 months. I hope you feel you can stick around.

or even given*

thanks Caz xx

Don't blush shab you look after us all so well. xx

you're not being nosey shabs! Sian died at the end of August, she was born with only one pumping chamber and defied science to achieve all she did. We were told not to expect her to survive 12 months, not to be able to attend normal school as her oxygen levels were so low and yet she achieved a Bsc hons and qualified as a speech and lanquage therapist. She was given a child of achievement award and a champion of learning. But her greatest achievement was finding the most wonderful young man, who came to visit her every day when she was in hospital, a round trip of 120 miles a day. It made me so happy to see them so much in love, and I worry so much about him now.

WOW Kaz - she does sound wonderful.

My next question was going to be about boyfriends I think all you can do is keep in touch and talk honestly to each other.

The more I learn about heart problems the more I think that my son, Gareth, would have eventually had to have a heart/lung transplant. Even though he only lived for 7 months he made his stamp on this world. He was fiesty, bad tempered, smiley, and as bright as a button. I have a picture of him and his twin brother on my profile. When I look at it now it reminds me just how poorly he was.

You are in the early stages of overwhelming grief....I wouldn't go back to those early days for a million pounds. The waking up in the morning and thinking it was all a dream...just for a split second. It does soften around the edges. I can promise you that. Older grief though does rear its ugly head and bite me on the arse bum now and then xxx

Wonderful pictures on your profile Shabs, if I understood the technology I'd follow suit!Its the loss of their futures that is so hard to take. Good to talk to someone who understands

Yes it is a loss of hope and dreams isin't it?

I suppose I better get myself off to bed. Up early tomorrow as usual. Thank you for telling us about your lovely daughter. Speak tomorrow xxxx

Evening everyone xxx

Hiya Kazmus - sooo so sorry for the loss of your daughter - she sounds an incredibly inspiring young lady. My son Gregor died aged two in March 2009 from what looked to be cot death but turned out to be an overwhelming virus.

Morning girls.

Morning ladies xx

Hi Kazmus I am so sorry you have lost your lovely Sian. She sounds so brave and went through so much.

My son Richard died suddenly in April after an accident (you can read my posts). He was 34. It was such a dreadful shock. I miss him so much and like you the need to talk to him is overwhelming sometimes.

He has given me a beautiful grandson and a step grandson who give us the strength to carry on.

I have gained such a lot of support from the lovely ladies on this thread. We are all in the same boat and we can shout and scream, laugh sometimes but we never judge eachother.
You do need to take one day at a time or like you say everything becomes so muddled.

Keep posting xx

Hello Kazmus

My second son has a single ventricle condition (he's in his teens & very well). We lost DS3 after an accident - he was 6.

I am so sorry to hear about your daughter - she sounds wonderful & obviously left an amazingly positive mark on the world.

Much love

morning ladies, how wonderful to find kindly voices at this hour! One day ay a time is my mantra at the moment as getting back to any sort of normal routine is so hard. I dont feel in control of my emotions yet to return to teaching..far too stressful at the best of times!Health problems as well but dont want to worry the doctor as probably all related to the grieving process.

what a terrible time you must have gone through heliantha. Where is your son treated? Has he had the total cavopulmonary shunt?

I don't like putting too much detail here, but he's had all his planned surgery & is currently very well :)

really glad to hear alls well...didnt mean to be nosey!

I don't mind you being nosey at all, & I'm really glad we have some shared experience (I'm also a teacher). It's just that the advantage of this being an open forum is also its downside imo. I had a rotten time with the press when DS3 died & I'm more than aware that stories like mine sell papers. If you'd like to chat 'off board', please pm me.

Sorry for sounding like an old grump :( It's really lovely to hear from you. I hope today has been gentle for you x

Hi Ladies, hope you are all ok.

Hi Kazmus, I posted on your thread last night, glad that you have joined us but so sorry you had to. Your daughter sounds amazing, so so brave.

Hey girls,

I haven't posted in a while, just had a shitty shitty week and struggled to do anything really. Don't know what has being up with me.

At the moment me and my DP are TTC and it has being a hard week with it, just constant reminders of my Zac tbh. Looking at cots, prams, moses baskets etc. in anticipation for when it happens but then being reminded that i have already had all these things but he never used them. Even breastpumps make me teary!

Sorry guys, there is too much on the thread for me to reply to everyone, i sincerely wish i could at the moment, maybe on my night shift i will be writing constant replies, who knows.

As always guys, my thoughts and prayers are with you and i send you all love and strength, because by god we need it xx

Morning girls xx