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.

Please don't beat yourself up about feeling angry- it's totally normal, and you're right. Your friend seems to have what you wanted, you have a life you weren't expecting and didn't choose, and that isn't fair. You are allowed to feel that way, so let yourself feel it for a while, have a good cry if it helps, maybe throw something (glass jars from the recycling explode very satisfyingly when thrown at our garden wall behind the shed ) then try to let it go. There are lots of ways you can put a positive spin on it, but I know when I've been down that just made things worse, so I'll just say, I'm sorry, things are shit sometimes. And offer a hug.

And also, try to remember that everyone else has their own demons too. When I was pregnant I had a lot of awful stuff going on with family, and felt ill for the whole 9 months, so when my daughter was born I found things relatively easy. A few of my 'new mum' friends who were struggling were openly jealous and made some nasty comments and it really hurt. I'm sure those people you are jealous of have their own stuff they write on internet forums at midnight too.

What a beautiful story you've written for the Team Bea page.

I have been very moved by your story of Beas life so far.from the link. Despite being on Beas threads I felt that in one whole passage it really read different iyswim?

Do not beat yourself up - you are not a bad person. You are human with human emotions.

How are you feeling Cup? I really felt for you when you last posted about your difficulties feeling happy for your newly pregnant friend. You are an amazing person Cup - but that doesn't mean you won't also have times when you feel down, jealous and even bitter. And it seems to be that you're expecting an awful lot of yourself, when the reality is that you can't do a 'once and for all' coming to terms with Beatrice's disability and how your life is now. I think there will always be points when the reality of your situation hits you in all its rawness. My situation isn't nearly so 'acute' as yours and I like to keep (and mostly manage) an outward appearance of coping and accepting. And I've been feeling rather ashamed of, and embarrassed by, a heartfelt text I wrote to a friend saying how it really was that week (dire!) and how hopeless I was feeling. But I know that she won't judge me for it - just as here on the SEN board we certainly won't. So post away when you need to Cup - the good, the bad and the ugly!

Thanks for asking pannetone I am still very up and down. Beatrice had a bad weekend, her feeding tube got blocked on Sunday meaning another trip to Oxford A&E. But before that, she was very uncomfortable with increased reflux so we had to cancel the babysitter we had planned to come over in case Beatrice wasn't well enough. Dh and I really needed that time together!! Never mind, we'll get there eventually.

As I said, Beatrice's reflux is very bad at the moment- this morning when she was still on her Sats monitor she was going down to the 40%s as she struggled to deal with her secretions. It's heartbreaking to see her like that, just horrible. I rang the CCN in desperation and she has liased with the GP to try her with Gaviscon again, one of the very first things we tried to squash down the NG tube all those months ago. Let's hope it's more successful this time...!

I also mentioned to the CCN that when we went to Oxford A&E they STILL didn't have a copy of her resuscitation plan! How long ago was it that I wrote on here about her being rushed to A&E from the hospice and after that incident Dr Doom promised she would send a copy over there? Empty words, always empty words.

Oh Cup, I wish I knew what to say to help but I'm a bit crap so I don't. Please just know that I'm praying for you, Bea and your family.

How's the Gaviscon going? I hope you and Bea are having a better day.x

Hope you can get the gaviscon down the tube this time. It might be worth talking to your pharmacist about whether there are any similar medications that would be thinner, they tend to know the different meds better than doctors in my experience.
My tip for the day (!), is that if Bea has regular medication, it is worth finding a great pharmacist and sticking with them!! (Waves to Mark in Boots!!!)

You know what I said about being up and down? Well, today was an up day. Beatrice was still refluxing badly, but we've had an exciting time together regardless! First, we went with SallyBear to the special needs school that her son attends. It was so lovely and the head was really welcoming. We met the teachers in the toddler room, and although they take children from 2 years, the head said they have a child starting taster sessions this week who is only 15 months! So, I will contact the community paediatrician and see what we have to do to start the ball rolling for Beatrice.

Then... we picked up the keys to our new home! We now have two weeks to deep clean it, put up a wall, decorate, do odd DIY jobs etc, before packing up our current home and moving on out. Busy times ahead!!

What wonderful news Cup. Is the new home still accessible from where I am? I am still so wanting to come and visit. I heard today that Bob can only attend the day hospice for twelve weeks, which runs out on the 12th December, so until then I will have Wednesdays 'off' Are they any good to you?
I'm so pleased to hear about the school. Hugs to all of you.

Yay for the new house! I hope you have much happiness there.

A new home! How lovely.

I hope you will all be very happy there.

Awww Cup I wish that you could have heard the amount of lovely comments I heard about Beatrice this afternoon, from the staff at DS's special school. There were a lot of people clucking over Beatrice this morning I got the distinct impression that they would love for her to attend our school. Yay!!!

Yeah to new home and a fun school session.

Sad news that Bea is now in HDU and not well :(
cupoftea has asked for prayers and have started prayer thread here

I have posted it there as SN is hidden to most

Cup, I am thinking of you, Bea and all the Teaset. X

I have just read the whole thread and am in floods...Bea sounds just amazing and your love for her and your strength shine through your posts Cup.

Praying for Bea and thinking of you all xx

Thinking of you all x

Thoughts and prayers for Bea, Cup and family
xx

Sending love, thoughts and prayers.

Sending my love in the wee small hours of insomnia . I am saying a prayer for you all .

Thoughts and prayers for the Teaset. Come on lovely Bea get well soon xxx

Sending love and light for beautiful Bea xxxx

I don't really have the energy to go into how we ended up here, I'm sure I'll post later. But needless to say, Beatrice is in HDU and the sun isn't shining. She's had a very unstable day, but is sleeping peacefully now. She is only managing to maintain her sats in an oxygen box at 50%, down from 70% this afternoon. I'm so worried for my girl and even cried last night which is unlike me. Thank you for the prayers and best wishes, I know that positive thinking works, Bea's shown us that time and time again. She's just doing her 'Bea thing' and will be back with us again soon. I hope...

Oh cup please know we are all thinking of you and holding your hand.

Please only post as you feel strong enough to do and if you want to. How Bea got to HDU doesn't matter right now (well it does matter but I hope yswim?) - getting her better does. (((big big hugs)))

Is there anything you need? x

Bea has got a whole community of positive thought heading her way, come on little Bea you can do it x
And massive hugs for cup and the rest of the teaset x