Making hay while the sun shines and always adoring Beatrice.

[cupofteaplease]

I have chosen the thread title this time, because current circumstances means the sun isn't always shining for Beatrice at the moment. Indeed, she is currently in hospital in a fair amount of discomfort. However, when the sun does shine, and we have bright and clear days, we pack in as much as we can.

When we brought Beatrice home from SCBU, we had the consultant's words ringing in our ears, 'Take her home and make some memories.' I feel confident and proud that we have made a treasure trove of memories, however long Beatrice's life may be. She continues to be surrounded by so much love and adoration from her family and I feel this love has helped her to thrive.

During the difficult days, such as these, we pray hard for peace and calm, and for a quick resolution so we can take our darling girl home and make even more precious memories with our beautiful Beatrice.

As with all other threads, same rules apply , read if you want to, post if you can, but above all, please spare some positive thoughts or prayers for Beatrice.

oh cup ((((hugs)))))

yes it IS a bit shit

you love your Bea, and so do your family and friends, her life is filled with love and that is what matters

what a shame about her birthday, maybe you could still have a small tea party at home?

It sounds really hard for you, and your relationship with your DH must be struggling if you see each other so rarely, I do hope you are able to get some time together soon

Take care of yourself too and have a

I am so sorry you feel so low.

You must have a celebration for Beatrice. Do it another day if your DH is working. We will all be celebrating in spirit with you all.

Oh God, Cup. If people truly got what they deserve in life, your life would be different, Bea's life would be different (oh, and a lot of bankers and politicians would find themselves in very different circumstances). There are no reasons and no fairness. I know I, and all of your 'fans', would do anything to make things easier for you and all your family, and it's crap being helpless.

It is shit that you have so much to deal with. it's not fair that other people have it easier. Is there any way we can help???

I have been reading for a while, but decided it is time to post.

Sorry to hear you are having such a hard time. I love the thought of you being able to celebrate Bea's first birthday in the way you want. Can I please pay for the first hour of the barn hire? (I know you weren't hinting BTW!)

Also, I strongly recommend you get some counselling. You need to be able to say how you are feeling to someone, without any judgement. And that, in my experience, is an opportunity counselling gives you.

I am serious about the barn hire.

I think there would probably be quite a few of us who would like to contribute towards a celebration for Bea. Maybe something that wouldn't take too much organising for you. You must be knackered.

I don't really know what else to say.

Thank you for your kind replies. pleasethanks, that is really generous of you, but I feel a bit listless at the moment, and I'm not sure I have the 'get up and go' to do the necessary organising. I know I am letting Beatrice down, I'm letting everyone down at the moment.

I did go to a counselling session 3 weeks ago, but it wasn't helpful. It was arranged through the wellbeing team, and the lady said herself she wasn't a counseller, but teaches CBT. She didn't want to know about my past or problems, but wanted to teach me how to deal with my anxieties from now on in. But I don't feel ready to do what she asked of me, so I'm going to cancel the follow up session. There's no point wasting her time, I'm just too broken right now, there's nothing she can do to help me, so her time would be better spent with someone else.

Crossed post with hazeyjane Thanks to you too. And yes I am knackered- emotionally more than anything else.

You are not letting Bea or anyone down. You don't need to do anything more than whisper 'Happy Birthday you amazing girl', that is enough.

And give yourself a large bar of chocolate, as a way of being a little bit kind to yourself after the unbelievably hard year you have had.

fully agree with what hazeyjane said

Might be worth asking about normal councilling rather than CBT as they are very different

You are not letting anyone down. My DD is about to turn two. We are doing nothing more than having a cake and a few more cuddles. You just need to do what YOU and YOUR family want to do. That is what matters.

CBT is not what you need. It is not counselling. Please get some counselling. I would say it saved me as a mother.

I have not posted before on your threads but have lurked. I have felt and do still feel very depressed and low when I try and think about the future. I also feel very pissed off at the unfairness and what I can't help feeling is the ease of other peoples lives. I think it probably helps to be able to give voice to it sometimes but it's hard to find the right person. I still haven't really found that person but I do have a good friend worse dc is also severely disabled and I know that she senses when I am down and does her best to support me and I do the same for her. I think we all try and be the positive strong person to help the rest of the family. I know my work colleagues and family think I am very strong. They don't however have a clue. I am full of admiration for how you have battled on living bea and being strong but I know that isn't much hel when you feel low. Try and be kind to yourself.

Cupof - I haven't posted here before either but I wanted to post to express my support - support I know we all share on this board of fabulous mums.

In terms of counselling, I would see a specialist psychologist if you have the time and energy to find one locally or PM me and I will find some suggestions for you. Counsellors vary a great deal in terms of qualification and experience and I would go for someone specially trained. I don't think anything you do with hem should seem like 'work'. You should be being supported.

I think it can really help to have a weekly slot were you see someone and it is your time. If you can manage that.

You are totally justified in your feelings of resentment and anger and grief and there are people trained to help you with this and not make you feel 'broken'.

Nothing I can say will make that any better but if I can do practical things to help I will. I am an absolute terrier at finding out information and accessing services/resources! Let me know if I can help.

If I live near you (do PM to see) I will very gladly take you out for a coffee and cake or help you arrange a party - I can do that by phone/email anyway.

I am serious - just PM me and I will help.

no bloody wonder you're knackered - your life is exhausting and it's not fair. We'll all be thinking of Bea on her birthday and having more than a few drinks on her behalf!

Also, I know you've got two older ones so you'll probably know what I mean, but I found the first birthdays for ds's quite hard and upsetting . Dp and I both had emergency sections, dp had PND with ds1 and it was hard coming round to the 1st birthdays 'cos it all comes back.

What we went through was teeny tiny compared to the year you've had so no wonder things are looking bleak at the moment

Anyway, we're here listening xx

Thanks so much all of you x

You've had an incredibly tough year - having to be so strong and resiliant is going to take its toll on anybody and it is shit that you have to go through any of this . Will be thinking of you and Bea on her birthday x

You are amazing.

Bea is amazing.

This year we didn;t have a big 'do' on DD's birthday (2) but we went to the park, and we bought a shiny balloon which she really liked, and we didn;t even buy a big preent as such because we had just moved house and we are halfway through decorating and its all very strange atm.

But she had a WONDERFUL birthday, no tears through over excitement, DH and I and her very closest family celebrated with her. and like Bea, she knows she is loved and will be forever - no matter what forever brings.

Re the babies. I have no answers. I watch those around me give birth easily and have sweet babies and never see the inside of a hospital again. Bitterly bitterly unfair. ANd all the time being happy for them. A huge hug, a really big bitterseet smile that this is NOT what they have in the parenting books and we simply have to do the best we can, and on that score you are doing totally brilliantly. x

I have lurked for many months and have posted a couple of times. I have 2 complex needs DC's with complex medical needs and a long history of our other adopted DC's with complex needs. What you said about going on holiday struck a chord. Holidays are usually brilliant but your work load is the same. As a friend said "different place same crap work"
I feel so much for you---you can't plan anything. Even birthdays are a luxury.
But enjoy the good days/hours/minutes with your little Beatrice. Jej tubes are to DS life saver.
Love to your family.xxx

Cup, another lurker here and just want you to know that you are inspiring. You really are amazingly strong and have such grace.

I have a DC who is not totally well, but have no idea how you cope.

Just want you to know that you help me put my issues in perspective and that I admire you.

Will think of beautiful Bea on her birthday, she really is the most gorgous thing :)

Oh Cup - I am so sorry that you have sunk into a low. Bea doesn't care about the parties or anything, just that you are there, and her Mum, and that no one could love her more.

Try to stay strong - and ditch the counselling if it is not helping.

Huge hugs for you and a big squeeze for Beatrice the Brave.

BIG HUGS]]

I wish there was something I could do to help you :( You're on your knees and it's not at all surprising, most of us would have reached this point months ago. Months ago.

A friend of mine had to take her DD into hospital this weekend just gone (she's fine, it was a virus) and my friend had a pull out bed in her room (shared room) (no uncomfortable plastic chairs!). They were monitoring her DD & her DD was near the nurses station - so not a lot of sleep for either of them! But it was one night, that's all, one night - & not even with any real worries (they diagnosed it pretty much immediately and got her on drugs quickly, were happy with her progress etc - my friend wasn't worried) and she has been on her knees all week and although I have helped her out with her 3 DD's so she could sleep etc all I could think of was you and how much time you spend in the hospital with Bea, the countless sleepless nights and worry and I really felt like telling her to pull herself together and to read Bea's threads... it was winding me up tbh.

You have done an amazing job this last 10 months looking after all 3 DD's & plastering a positive smile on for everyone, but you need to look after yourself as well. Physically & emotionally.

It is shit. It's absolutely shit. It's fucking unfair. Your life is bloody hard - and that sucks. It's shit watching everyone elses lives move forward when yours isn't... and when it is, it's to a future you don't want :( Bea has changed your life in so many ways, so so many. Other peoples happiness can be very very hard to see and especially if it's baby related, that's normal. Shit, but normal :(

I don't think the CBT counselling is what you need right now - it takes far too much energy. You need a 'safe space' and an 'understanding pair of ears' to offload onto - you need to be able to let it all out to someone who is not emotionally involved. Let someone help you to find that person.

As for Bea's birthday - it's a toughy. Is there anyone you could ask to organsie a party for her so that all you have to do is turn up? There must be one (or more!!) friends/family members that would jump at the chance to do this for you?! I don't think it matters to any one year old what you do or don't do on their first birthday, but I don't want you to ever feel you should have done something & didn't. It's hard to explain, I don't think you need to do anymore than a cake and lots of cuddles with you and her sister & Dad, but I don't want you to feel you wish you'd done things differently?! .

I would love to offer to do it for you, but I just can't right now - sorry :(

Please don't underestimate your friends, you are so lovely that I'm sure you must have lovely friends IRL who would totally understand you crying on their shoulder and raging about how fucking unfair it is - not plastering a smile on your face... start letting people in, they want to be there for you xxx

It's not unreasonable to feel low. It's a perfectly natural reaction. Your life did change from all recognition last September and you are a different person now from the one who waited for Beatrice's birth.
What happened to Bea is so very hard to understand and even harder to accept. You live your life now based on what you can see and feel happening for her and on the medical advice you're given. I know the future is terrifying BUT it hasn't happened yet. Nobody knows what will happen. It's ok to be broken. We all would be in your shoes. It's ok to feel angry tha you have to face this when other people don't. It's ok to feel frustration over your career and your family life. Because alongside all those things you also feel the love for your beautiful girl. The two sides of this situation are utterly linked.

You know I believe in miracles. I'm thinking of Jeremiah 29 'For I know the plans I have for you, says the Lord. Plans to prosper you and not to harm you. Plans to give you a hope and a future'
We may not understand this plan, we may not understand the future that comes, we may find it hurtful and frightening but that is only as far as we can see. I believe there is more to life than the right here, right now. I believe in miracles in our lives. So be as sad as you need to be. It's ok to feel like that. You let nobody down by doing so. It's part of a journey and there's much, much more to it than we can see. Just hold on. When the sun shines feel the warmth on your face and let it carry you through the winter. We've been here talking about Bea for a year now almost. We will carry on doing that. All we can do is try and carry you a bit so lean on us too. If you want a party for Bea then we'll make you a party. Don't know how but nothing is impossible. Say and we'll make it happen.

Oh Bea, I watch your thread cheering for you all when Bea once again achieves another milestone. It is absolute crap having to go through the ups and downs of having a child with such difficulties as Bea. But, it is perfectly normal and healthy to feel as you are feeling so please don't ever feel bad for admitting to those feelings, you need to for your own wellbeing and sanity. I have underlined that as it is so important to voice your feelings. I admire your honesty as people often can't hear what you need to say.

My dd had a brain tumour when very little and I found that a lot of people really didn't want to know. I remember being in Tesco and the cashier asked me why she held her head at an angle and I almost shouted that she had had a brain tumour. The whole shop went quiet but I felt better for saying it.

I agree CBT is not the answer for you but finding a good counsellor who will listen and allow you to express your darkest feelings may help you enormously. I can't help you practically but I am a psychotherapist so if you want help in finding a good therapist then please pm me, if you feel able.

Also, anniversaries often bring up memories and feelings and Bea's birthday may well be contributing to you feeling down by remembering and re-living the shock and agony of the early days. I have followed your posts since then and hold you all in my thoughts.

Oh cup. You just give and give to your family every single minute and spend so much time being strong - of course you feel low and depleted. I would have been a basket case from week 2 and you battle on and on, just being such a magnificent mother to all your girls.
What will Bea want to do on her birthday? She will want to have a cuddle from you, feel all the love that she has felt every minute of her life and maybe see some pretty lights. Great decision not to wear yourself out further by entertaining people.

cup you have had a very tough year but you have achieved so much. You have been a wonderful mother to all your girls and Bea has thrived. A cake, a candle and your girls singing happy birthday to Bea and you all giving her birthday kisses will be a fine celebration. Thank you cup for being so honest with your emotions, I hope you can get the right help to keep moving forward. My son is a teenager now and birthdays are always a little difficult because it brings back to me the day our lives changed. The future is uncertain but I do agree with your posting about love, everything you have done for Beatrice shows the power of love.