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.

So, so, so pleased to hear that things are going so well and just love that picture of Beatrice.

Much Love to all of you.

Loving Bea the Beautiful's photo.

Pleased all is well, a much needed chance to recharge batteries for the whole teaset

New photos are great, hasn't B got chubby!!

What a beautiful photo.

I'm so glad you are having a settled week and that Bea is doing so well.

Hope you have a good weekend.

So glad all is going well for you all.

Lovely photo, she is gorgeous xx

So glad things are going well and that you are managing to get back to work - even if it isn't for as many days as you would like!
I'm glad the CCN is coming with you to the review meeting next week. She is right - we do so many things for our DC that we just treat as normal, that it is difficult to separate out the 'caring' duties from the parenting role. I know I am the worlds worst when a new doctor is taking a case history for DD & they ask what problems/medical conditions she has - I usually leave half of them out, because DD is just DD - the way she has been for the 17 years of her life!

Right, I need to get this out and here seems as good a place as any. People ask me if Beatrice is ok, and I reply yes. But realistically, she has scarring on her lungs from each, frequent chest infection and one day, those lungs will cease to work and she will die.
People say Beatrice is a fighter. I understand the sentiment and good meaning behind the statement, but realistically she's a baby who is living her life in the only way she knows how. Why should she have to fight?
People say I'm doing well. Thank you, but some nights I sit and cry as I hold her, imagining the day I have to bury her.
Would I go back in time and change things? Of course not. Would I take away all of Beatrice's SN? No, because she wouldn't be Beatrice. I love her for who she is.
But please, when you tell me of another healthy baby that has been born, please allow me a little time to be self indulgent. To cry inside for the future Beatrice doesn't have. For the grief her sisters will have to endure. To mourn the laughs I can't hear, the smiles I can't raise and the achievements I will never see. I promise I will be happy for you and your baby, but not right this minute. I'm only human and I'm dealing with my emotions the best I can.
Yes I am lucky to have 3 beautiful girls, but one day I will only have 2, and they will have lost a piece of their hearts, the same as me.
Life sucks today.

We do understand, cupoftea, well some of us, anyway. It's usually best to slap on a smile and a positive attitude in public, because if you look happy and positive you will feel happier. It's not how you feel inside, I know, but it does help you get through it. Hopefully these threads are a place where you can be honest about your feelings. You don't have to be slapping the smile on here all the time. It's not your job to comfort the whole of MN about Bea. There are people on the SN boards who can empathise without sympathy, and the rest of MN are trying to be being really supportive. Bea is life limited, but that's not the whole point of her existence. Sometimes it's overwhelming, I'm sure. You really don't need to be constantly putting on a brave face. ((((hugs)))) We can hold your hand through the tough days as well as the better days. Xx

Cup, this is exactly the right place for your post as I think a lot of us do understand what you mean.

Oh sweetheart. The grief is as real, and as important, as the joy. We're all behind you and know that you don't have to put a face on here. We've all been ranting and raving and crying and screaming at some point. Much love to you.

(((hugs)))) for you.

Feel how you feel, cry if you need to, laugh when you want and post those pictures of the scrummy looking Teaset whenever you need and/or want to. Be brave when you have the strength, tell people to bog off when you don't . Most of all be true to yourself - anyone who doesn't and/or can't understand you need to work things through and react in your own way is not worth having in your life.

I'm really pleased your enjoying work and your collegues and pupils are lovely.

I have spent ages trying to post something - most of what I type never seems enough.

I can't imagine how hard this is for you and your family every day. There are now words that I can use that will be of any use to you. I do think about you and your family a lot and have only to offer.

(((hugs)))

I don't know what it's like to have a child with a life limiting illness but I do know what it's like to argue with drs, health visitors, social workers etc about what my needs and what is best for him. I know what it's like to cuddle my child and cry about the things he will never be able to do. I know what it's like to see a pregnant woman moaning about morning sickness and think (very unsympathetically) but that's temporary, in a few months you will have a healthy baby and I will still be trying to explain to my child's teachers how my child is exhausted all the time and can't cope with more hours at school.

Sorry, got a bit carried away there. just trying to say that you're not alone, even though it feels that way. And it's ok to feel like you do, it's hard being positive all the time.

{{{{{cup}}}}}

I don't know what to say after your heartfelt post. I think of you and your gorgeous family often and [[hugs]].

Sending so many hugs your way.

(((squeeze)))

Post away Cup - we are happy to hear it all. Cup you will always be the mother of 3 beautiful daughters. You and your family have endured so much, as has your precious baby Beatrice, and as you say there is undoubtedly heartache to come. That must be so difficult to live with. So tonight especially sending you love and a prayer. x

we too understand your emotions sadly we had our fears confirmed when he was just 13. All I can say is "when she is happy smile and enjoy", when ill feel sad. You will know when time is up but until enjoy what you have.
Much love to you, your family and ofcourse Little
It will be very hard but you will survive, you have to.
Love from someone who is surviving XX

Your baby has the most beautiful eyes I have ever seen.

Cup, I'v been following Bea's journey from the beginning and your recent post brought tears to my eyes. You and Bea both seem so strong, that it's easy to forget the endless struggle you both have. I agree that it is wrong for a little baby to have to be a fighter. This is the place for you to say exactly what you feel and we will support you as best we can. When you are having a tough time, MumsNet will cry with you. When you have good days we will smile with you - we love to hear about all three of your lovely girls. If the day comes when you have to say goodbye to Bea, there will be a total flood of tears from us all. But nothing will be able to take away the fact that this amazing little girl who has touched all our hearts is YOUR amazing little girl.

Oh cup. Don't ever apologise for what you post. You and your dear Teaset are in a tough place and you always show such grace and dignity in your thinking. It is bloody unfair. I hope there is more sunshine to come soon. Hugs to you.

Hi Cup. I'm so glad this thread is a space for you to express all of your feelings - happy, sad, angry - whatever. Keep posting

Cup apologies not needed.

Glad life is running smoothly.

Cup - pleased to see that you are back at work and enjoying it. Also that Bea is doing okay, nothing to report is a huge bonus!

As for the rest - well of course, I'm sure we all understand the situation - but we're here to support you in everything and to buoy you up, not bring you down. You have to deal with the reality of the situation you face every day - we can give you space to vent in whatever way you need to, and that includes lots of positivity, however misplaced it might eventually be. Equally though I think that we all are aware that there will probably come a time that you will need even more support if/when Bea's condition deteriorates.

I hope that Bea carries on for as long as she can - she has beaten the odds and docs' predictions by miles so far, so I think it's fair to say that your baby girl has a lot of strength of will and character! Long may it last my lovely - and still, don't underestimate how great you are being. xxx

Hey cup, I'm really pleased to hear there is not much to report and also that you were able to say those things on here and not carry them around with you.

Whatever happens, we will be here for you to laugh, cry, feel proud and feel down and every emotion in-between.

Sending huge hugs x