Not borrowing trouble ahead of time, just enjoying each day with Beatrice.

[cupofteaplease]

Thanks to Thumbwitch for inspiring the title of this new thread.

I will do my very best to minimise my worrying about the future as none of us know what it holds. For now, it's all about celebrating Beatrice's life today, every day.

As always, please feel free to follow us on our journey, and thank you in advance for the wonderful advice I am bound to receive from fellow parents, of SN children or otherwise.

Here's to a positive, uneventful thread!

Cup, I've just read about your coffee with friends and really felt for you. You know what you had hoped for.

I know every child is different, be they with special needs or not, but I thought it might help if I told you about one of my DS's friends.

DS has Aspergers but is in main stream school. a girl in our road was born with severe medical and learning problems, she was not expected to live longer than 6 months. She is now a teenager and goes to the same school as DS. Everyday he searches her out in learning support and plays hide and seek with her (using his hands) or plays as you would with a baby of 6 months.

I understand that this girls mum has not had the joy of seeing her daughter run, develop, achieve 'normal' things. But this beautiful girl does enjoy life, have friends at school who spend time with her, attend lesson, show love and laugh.

She does have spells in hospital when we all pray and try to help out, but we also get so much from knowing her and her family.

Every person in this world is valuable, Bea is especially so. Thank you for sharing your story

I agree with what everyone else says.

What could be more precious than a child brought to this world to show and receive unconditional love.

X

Great idea about CDC group. I found meeting mums at the local mums and toddler groups so upsetting as there was mega competitiveness about everything. I would say to them " as the driving test examiner says, in your own time". My son didn't need a CDC group as his hypermobility meant he could take part in some things but I did change groups where there was a fab quiet room with age appropriate toys, and fab biscuits, and mums who understood. I could see Bea there too. I suppose I am saying shop around! People do not understand what makes us who we are and react in different ways, being unaware they are saying upsetting stuff. How do you get on with you older girls' friends' mums? Are they more understanding and less competitive?

Maybe phone Contact A Family in case they have another family with Bea's conditions looking for a family like yours. Not everything is listed at the website. Their fieldworker for your area could also advise re holidays etc. Ours has been fab!

There are organisations who advise about holidays - see Radar, Contact A Family, Disabled Living Foundation..... And what about the hospice - they may have ideas.

I used to be an OT so am glad you are seeing one.

I wish I had had mumsnet talk when my son was young as it can feel so lonely when mixing with non SEN parents. Hugs :)

Cup, if I remember right, you don't have a diagnosis for Bea, do you? Have you been in touch with SWANUK? (Syndromes Without a Name?) As a group we have children with all different levels of need, regional groups are being set up, and the FB group is very active! Just a thought, as it's a way of finding people who may be in similar situations. XX

Madoldbird - that's fab as I was 38 until I had a diagnosis for my family's hypermobility and a group like yours would have been so comforting in the years of not knowing.

Madoldbird. Great direction. Thank you. My two DC have clinically Dx TCS, but they can't locate it yet amongst the known TCS genes, so there has always been some doubt about the original Dx.

Sorry to hear about your hospice stay being cancelled.

Just popped in to say Hi and see how you were all doing. Your post about the coffee morning was so poignant, but as you say Beatrice is there to be loved - and how loved she is. She is an amazing little girl and so special.

Bea gives out so much and soaks up love in return.

The other parents were insensitive.

Yeah to weight gain, 7 months already.

Just a quick update to say that we are having a nightmare with Beatrice's feeding tube. It's been out for over 24 hours and they can't get one in. Oxford have no beds. At the end of my tether andBeatrice is starving and worn out. We are currently waiting for a reg to come and try for IV access. If they can't get one, they'll have to go in her scalp, which means shaving her hair In the grand scheme of things, who cares about hair, but that's not how my baby's first hair cut should be. Please, please pray for Beatrice this evening- for easy IV access, a comfortable night and a successful tube placement tomorrow morning. Thank you.

Crossing everything

Sending love

thinking of you all, crossing everything xxx

Praying for you here too.

Poor little thing (and poor you too.) Keeping everything crossed for you. xxx

Thinking of you both.

Praying for big, bulgy veins xx

Thinking of you.

Thinking of you all and putting you in my prayers as always x

Couldn't get a cannula in, didn't try her head. She's on half milk, half dioralyte via NG and is obviously unsettled. They are going to keep an eye on her and if need be, try in her head later in the evening. Dh is going to sleep here tonight and I am going to go home. I've still got the remains of sinusitis and need some sleep tonight.

Poor love.

Thinking of you all tonight. xxx

Praying for all of you. Have also posted on the prayer thread.

Thinking of you all xxx