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Original poster

Making hay while the sun shines and always adoring Beatrice.

989 replies

cupofteaplease · 29/05/2012 14:30

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. Smile

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 Wink, read if you want to, post if you can, but above all, please spare some positive thoughts or prayers for Beatrice. Smile

OP posts:
saffronwblue · 02/10/2012 12:34

Your writing is so powerful and so full of love. Hope you get some sleep soon.

Original poster
cupofteaplease · 02/10/2012 13:33

Thank you Anya!

Bea is still under the weather today. Nothing majorly wrong, she's just not herself.

OP posts:
Original poster
cupofteaplease · 02/10/2012 15:24

I can't get Beatrice's temperature down. I'm beginning to have a wobble, she looks very uncomfortable Sad

OP posts:
pannetone · 02/10/2012 16:22

Saying a prayer for Beatrice and for you too Cup - so hard to see your children suffering. x

FancyPuffin · 02/10/2012 16:29

xx

Milliways · 02/10/2012 16:34

Aw, hope she gets cooler soon. Praying here.

AnyaJetski · 02/10/2012 18:33

How is Bea this evening? Hope she is a lot more settled.

CotherMuckingFunt · 02/10/2012 19:26

How's Bea doing now? Prayers for you and her.

Original poster
cupofteaplease · 02/10/2012 19:40

Thanks for asking- she's more alert and thrashing less. Whatever it was, I think she sweated it out this afternoon, poor thing.

OP posts:
Scheherezade · 02/10/2012 21:00

I hope Bea improves, maybe phone the Doctors to find out if it's a normal reaction to the jab?

The page is lovely. I remember when you told us on the October baby bus you were going for the C-sec, and none of us realised just what was going to follow. Those first few days/weeks were heart breaking, but look at her now, over a year old and having more fun than a lot of babies do!

Original poster
cupofteaplease · 02/10/2012 22:59

Thank you Scheherezerade. I just want her to have the best life she can.

I'm in a low place again. I don't know why but I can't stop myself. I've just spent the evening with my best friend who is expecting her first baby and I'm doing a terrible job of dealing with it. I'm overcome with jealousy, it's awful. They have their whole future laid out happily in front of them and then I look at mine and see failure and sorrow. I'm 30 years old and feel my life is over. I want to be happy for my BF, she's an amazing person, but I think my state of mind could ruin our friendship, I'm so bitter.

I'm a bad person, I must be for feeling like this. How can I be angry at pregnant women and babies? That's not normal, but bitterness is all I feel Sad

OP posts:
DutchOma · 03/10/2012 07:24

Cup, I'm so sorry that nobody answered your post last night.
Pah, "I must be a bad person", goodness gracious me, would there be anybody but you saying that?
Certainly not the mother of a disabled child, no, in fact nobody at all would.
And you know what?
Your BF doesn't KNOW what lies ahead of her, nobody does.
We are all in the hand of God Who gives blessings. Sometimes those blessings come in shapes we don't particularly like, but they are blessings nevertheless.
Your Bea is a blessing, you are. You are an inspiration to so many people, far more than you will ever know.
Don't let bitterness spoil it. I have a 'day off' today as Bob will be at the day hospice. I am planning to meet a friend at Abington Park, but will cancel it in a heartbeat and come up to see you. Text me if you would like me to do that.

Original poster
cupofteaplease · 03/10/2012 09:50

Dutch you are so lovely. No
, you enjoy your day with your friend, goodness knows you deserve it! I'm busy with hospital and other appointments today anyway- for a change!
Thanks for your kind words x

OP posts:
susssiq · 03/10/2012 10:19

full of tears after reading Beas background story even though I have followed her since the start. What you said about telling her sisters about her going to heaven struck a chord, its nearly time for nephews open heart surgery and I don't know what to tell my kids if anything, he nearly died last time but my son was only 2 now he is a bright 6yr old who is very aware of his cousins broken heart and wants to know when they will fix it... Advice is gratefully recieved...

Hope Bea is feeling better today and so you know both my kids spiked temperatures and had cold symptons within 24hrs of there mmr jab.

moajab · 03/10/2012 10:26

Cup, your threads have shown me many things. But one of them is that when we see mothers like you we shouldn't just think "wow, they're so amazing. How do they do it?" and not reflect on the fact that that 'amazingness' must be hard won.

I think how you're feeling is completly normal. It's ok to think back to the days when you first knew you were expecting Bea and grieve for the life that you thought you and she would have. And to be a little jealous of those who are or appear to be living that life.

You are amazing Cup, in how you've fought for Bea and made the best life possible for her. But you don't need to be amazing all the time! And especially on here it's fine not to be and just scream "it's not fair. Why us?" It doesn't make you a bad person. It just makes you human.

Your family are often in my thoughts. I'm keeping my fingers crossed that the bad days like yesterday when things seemed so hopeless are soon balaned out by some good days that make you smile. xxx

MNP · 03/10/2012 12:12

Cup your an amazing person and your little wobble is understandable.

I hope little Miss Bea is better today, the appointments are positive and please give Yourself a hug, your doing a extremely hard job with smiles and positivity.

SDTGisAnEvilWolefGenius · 03/10/2012 12:27

Cup - I suspect that what you are feeling is very normal - and you are most certainly not a bad person at all - you are a human being, and have strengths and weaknesses, good days and bad days, just like the rest of us. And you have us here for you, whenever you need us, and I am sure I speak for everyone when I say that you need never censor what you say here, because we know you, and care about you and Beatrice so much, and that means we are here for you in the dark times just as much (if not more) than the light times.

{{{hugs}}} for you and Bea.

bigbluebus · 03/10/2012 12:32

Cup You are not a bad person. You are a fantastic person and what you have had to cope with in the last 12 months is something that no-one could ever imagine they would be able to deal with - but you have.

The feelings towards others and their babies will get easier, I promise. I can remember feeling exactly the same and the 'evil' in me almost hoping that someone else that I knew would have a disabled baby, so that I would have a friend who would understand, and we could tread the road together. The reality is, I have since met lots of people who already have disabled children and they are a great source of support and comfort. You are also at an age where lots of your friends are at the 'giving birth' age. That is a stage that will pass and although you will watch their children grow and develop at a rate that Bea will not be able to compete with, you will learn to accept her limitations. Some friendships will be maintained, some will be lost, as you have little in common, but that happens for anyone in life anyway, regardless of your circumstances. Your true friends will remain just that.

There are still times when I think about what my DD should be doing in comparison to friend's children and nieces and nephews of the same age. But it doesn't hurt as much and I console myself with the fact that I don't have some of the same worries for DD that friends have with NT children eg no sleepless nights for me over GCSE results, no need to worry about where DD is, who she is with or how she is getting home, no worries about alcohol or drugs (except the huge anount of prescription ones she has!!).

Never forget, you are a fantastic mum to all 3 of your children.

hazeyjane · 03/10/2012 12:46

Cup, just wanted to say, I read your story on the TeamBea page, you write so well. Despite having followed your thread since the beginning, it still took my breath away.

You are not a bad person, you are incredible. Look at your story, that is one year of your life, and you are still here, still fighting for your lovely girl, hell you have every right to feel bitter and angry. I remember having a molar pregnancy before I had children, I was on intensive chemo for a year, I thought I would never have children, I couldn't bear to be around friends with babies. I wasn't a bad person, I was just in a place where a reminder of something I couldn't have was agony to me, and I just didn't need it at the time. You have to do what you can to keep yourself strong.

By the way, have you been prescribed Lacrilube for Bea's eyes? Ds sleeps with his eyes open, and he doesn't blink much so they are often bloodshot, his opthamologist prescribed lacrilube to moisturise his eyes.

bishboschone · 03/10/2012 13:13

The donations page .. Does anyone know , do you use PayPal ? I would like to donate but I can't see how to ..Tia

annalovesmrbates · 03/10/2012 18:35

Oh my goodness Cup, you are many many wonderful things, a bad person you most certainly are not!

annalovesmrbates · 03/10/2012 18:35

Oh my goodness Cup, you are many many wonderful things, a bad person you most certainly are not!

CotherMuckingFunt · 03/10/2012 19:04

I was going to type a long reply but then I saw that anna has summed my thoughts up perfectly so, wot she said^

Lovethesea · 03/10/2012 22:08

Cup - have donated a little towards Bea's equipment. But you and Bea and your family's faith, love and hope in the face of loss and suffering have given me so much.

You are love in action. Bea is bringing so much good out of those around her as you wrote. Love is not an emotion or a whim, it's acting for the blessing of others whether we feel ok about it or not. The dark, angry thoughts and feelings - just human, reread the Psalms, totally normal, healthy and best said, acknowledged and moved on from when you can.

You have to do this, but you don't have to do this alone. I'm praying you get all the friends, chocolate and time to rest you need in RL.

eightytwenty · 03/10/2012 23:04

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