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

1004 replies

cupofteaplease · 21/02/2012 22:31

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

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!

OP posts:
gingergran · 10/05/2012 23:21

cup, i am a long time lurker and bea fan and can remember the very first thread you wrote after she was born and how far she has come. Reading about bea makes me smile and in spite of all her difficulties the very obvious love that surrounds her is truly inspiring. It is quite amazing how in her short life so far she has touched the hearts of so many people, most of us strangers, she has a very special gift.

JessCartandahorse · 11/05/2012 08:50

That's the trouble with experts who are (rightly) working with their protocols, but who miss the subtleties and nuances of the individual child. Ho hum, what can you do? Assume their best motives and patiently explain how you find it best to care for Beatrice, I guess.

I admire your strength of character so much cup . Beatrice is surrounded by so much love and stimulation - you are doing a grand job!

starfishmummy · 11/05/2012 09:51

Agreeing about the protocols with feeding! We found, with DS, who went to two different hospitals, there were two different protocols. Not to mention differences in interpretation between different wards in the same hospital and then what the ccns told us.....
Basically we just took a look at them all and went our own way; however in front of any health professionals we did it "their" way to be on the safe side!

Sidge · 11/05/2012 10:54

Huh? Why would you try to aspirate an NJ tube? There's not really any significant acidity/alkalinity to measure - the pH of the jejunum is fairly neutral!

And there's unlikely to be any fluids to aspirate anyway as the jejunum is hardly swilling with acids, like the stomach would be. Hmm

Muppets. You tell em I said so! Grin

Ahem, anyway, have you got a special school near you for children with severe disabilities? Ours had a nursery and also ran a baby group once a week for babies and toddlers with severe/complex disabilities. It was lovely to be with people who didn't bat an eyelid at tubes and monitors. And the staff would play with our babies whilst we drank coffee and scoffed cakes. Bonus! And of course they had sensory equipment up the yingyang too.

Re half term - come on down! I will be free the Wednesday afternoon (June 6th) or all weekend the 9th/10th.

cupofteaplease · 11/05/2012 14:51

Sidge Thank you, someone who talks sense! I thought I was going mad?! I shall contact our local-ish special school and ask about a baby group.

I've had a bit of a crappy day today. This morning I went to meet up with a couple of friends with babies the same age as Beatrice and whilst she slept the whole time, they sat in high chairs, eating finger foods, smiling, laughing and communicating with each other. We were all enjoying watching them, but one of the mums was very vocal about how clever they are, and how she can't wait for the two of them to be running around together and getting up to mischief, and how they will be best friends at school etc.

I was just sat there with nothing to say or any value to add to the conversation. Beatrice won't be running around with them will she? She won't talk and play and go to school with her friends. She won't have any friends, will she? It just felt so utterly shit. What have I got in common with these mums any more? I left feeling like a complete loser. And Beatrice just woke up and stared at me contentedly, like she does. She'll never understand what it means to run madly feeling the wind in her hair or laughing so hard her sides hurt and tears stream down her face. But on the upside, she'll never have her feelings hurt. She'll never know that other people have fun or feel sadness- to Beatrice, life will just be as it is. As it was the day she was born.

Her sole purpose in life seems to be to grow and be loved. I know I'm helping her do those things. But then people such as gingergran have said such lovely things as, "It is quite amazing how in her short life so far she has touched the hearts of so many people, most of us strangers, she has a very special gift." How astounding is that? This little girl who can 'do nothing' is teaching people new things, inspiring and changing lives. Slightly more powerful than your average 7 month old, hey?! Wink

So anyway, after this emotionally-charged morning I was looking forward to going to the hospice. The girls were so excited and had made lovely cards for their favourite sibling volunteer because they remembered she works on a Friday and Saturday. I'd just started packing Beatrice's things when I received a phonecall saying our stay has been cancelled due to an emergency case coming in. Obviosuly, I feel wretched for the family whose child needs the bed more than Beatrice, I pray they get the support they are going to need. Dds1 and 2 are going to be soooo mad at me when I tell them though. They were sad when our trip was cancelled a fortnight ago due to Beatrice going to A&E, so this will go down like a lead balloon. I'd better think of something else to do instead pretty quickly before I collect them from school, or I'll be public enemy number 1!!

OP posts:
NappyShedSal · 11/05/2012 15:34

My goodness, your last post has really made me well up. You put things so eloquently. No, Bea may never run round and laugh with friends, but as you say she will be loved - possibly more loved than other children who we take for granted - well differntly loved. My goodness, I'm not being eloquent at all - it's especially hard when you can't see the keyboard properly either!

I'm sorry your hospice stay has been cancelled - I do hope your girls aren't too disappointed.

Cup - you are an amazing mother!

bigbluebus · 11/05/2012 15:58

Cup. I know exactly what you mean about being under scrutiny all the time. We have respite workers in our home - but I only arrange for them to come when I am going out. As a mother, it is normal to not always follow procedure to the letter (as there aren't enough hours in the day) but we would never compromise the safety of our child by doing so. I have no experience of Nj tubes but from what you say, aspirating is pointless. I have in the past been given instructions to aspirate DD's Mic-key button - but that too is pointless - unless it has just been changed (in which case it is part of the procedure) or it has been yanked by accident - in which case we check to be on the safe side!

Re the bumps and bruises - I have only come acros this at the Hospice, and have always taken this as a procedure to monitor any 'injuries' or skin break downs sustained/occuring whilst in their care and not as a reflection on my treatment of DD. For what its worth, DD had 2 broken legs last year and as no-one knows when or where it happened, no suggestion of apportioning blame was made. I never felt as though anyone thought I had done it or was in any way to blame.

When DD was a baby, we attended a 'playgroup' for pre-school children with SN which was held at the child development centre. It was here that a met most of the mums that I have maintained contact with over the years and our children have gone through the local SEN school together. Even though they all have different conditions, many of the issues we face on a local basis are the same. Eg equipment provision, school, hospital appts etc and now we are all going through transition into adult services together, so are able to share info.

I'm so sorry your hospice weekend has been cancelled. We have been really lucky, in that it has never happened to us,but accept that it could.The Hospice will not have taken the decision lightly and you never know when that family in desparate need might be yours (or ours) and someone else will make way for you.

Hope you have managed to think up a little treat for you disappointed girls.

Bobloblaw · 11/05/2012 16:06

I'm sorry it's been a bad day, I still have days when it's all just crap. I actually find it easier now Bella's peers are such a long way ahead, there is just no comparison now, I do still have my moments, I cried silently through a birthday party recently as it all just felt so overwhelming but those days are few and far between now.

Bea is a truly amazing little girl, she has touched a lot of hearts.

Four4me · 11/05/2012 16:29

Just caught up on your thread and wanted to give you a big hug. Today has been one of those low dips on the rollercoster ride. Hope the girls weren't to disappointed. I'm sure you will deal with it amazingly.

So understand how you felt this morning with your friends, I think a sn playgroup / baby session would be a good idea. I met some lovely people with children with a variety of extra needs through CDC groups and riding for the disabled groups when Tom was little. All in different situations but all with the same hopes and dreams.

Take care of yourself. X

cupofteaplease · 11/05/2012 16:32

Huh, well I totally misjudged and underestimated the girls. I picked them up from school and explained that we couldn't go to the hospice because another child was very poorly. Dd1 asked, 'How poorly? Is it their time to go to Heaven?' to which I replied that possibly it might be, and she said,'That's sad then, shall we go to the park instead?' So that's what we did, and now they have both gone to Friday Club (which is like Sunday school) and I'll guess we'll carry on our weekend as usual, thankful in the knowledge that Beatrice is well enough to allow us to do that.

Thanks for the messages of support- it helps to know I'm not alone, even though that means you've been through it too. So sorry about that! Grin Bigbluebus and Bob you've both suggested the CDC now for support groups so I'll give them a bell.

OP posts:
ExitPursuedByABear · 11/05/2012 16:33

What a shame the hospice stay has been cancelled. Hope you find something fun for girls to do.

cupofteaplease · 11/05/2012 16:34

Oh, crossed posts with Four4me too, also recommending CDC- must be the way to go!

OP posts:
cupofteaplease · 11/05/2012 16:55

CDC closed at 4.30pm, so I'll call again on Monday. Dh just took Beatrice to be weighed and she's 12lb 3oz- chunky monkey!!

OP posts:
Lougle · 11/05/2012 18:26

You're fantastic, really. I'm fairly near Portsmouth, also Smile

JustFab · 11/05/2012 18:36

Your friend was very tactless and hopefully one day she will realise and not be so unthinking again.

Your baby is amazing. I saw some Gruffalo plastic plates, dishes and a bag today and thought of her. I often think of Beatrice and would love to have the honour of meeting her.

By the way, what happened when MrCup saw the real phrase on the bib?!

JustFab · 11/05/2012 18:37

Wow at the weight gain ! Grin

Northernlurker · 11/05/2012 18:50

What a great weight! Bea's voyage is teaching us all a lot Cup. She matters so much, she gives so much. To you all and to us, most of whom have never met her. She is AMAZING. People can live a long, long time and not show the loving courage that Beatrice's life shows.

Ooops - no I can't see my keys either.

Have a peaceful weekend.

youarekidding · 11/05/2012 19:03

Oh yes I forgot lougle's near here too. The more the merrier - this could be a fun meet up!

wow on the weight Grin

Sorry to hear you feel scrutinised cup I have been in this situation because we get taught protocols at work and then parents do it differently or tell us to do it differently. We have just been told to do it how we're taught (follow protocol) and let the parents do as they want - it's their child.

Sorry to hear your trip has been cancelled but your older DD's sound like they have handled it very maturely - you must be so proud.

BB3 · 11/05/2012 19:14

Look at the chunkster go!

Beatrice will find her own path with some help from you all. She might not run in the wind but she will find immense joy in other things. She will have friends in her sisters and family (and her mn family) and will experience love in ways that many other children will ever know. She's lucky to have you all and vice versa xxx

ohmeohmy · 11/05/2012 19:49

Another here who has experienced the competitive development comments at playgroups. It can be so upsetting but I am glad you find solace in the fact that your lovely girl has touched so many through your eloquent descriptions of her. your other daughters are clearly demonstrating how they have been enriched by their sister too.

OhDoAdmitMrsDeVere · 11/05/2012 20:26

Has Bea been referred to portage yet cup?

JKSLtd · 11/05/2012 21:28

cup - I am a long term lurker on your threads about Bea.

A few things I feel the need to say.

Portage - brilliant - lent us a bubble tube for as long as we wanted it as DS2 loved it.

Portage also runs a playgroup (every week but we don't go to that as DS2 is in SN sch) every Wed in school holidays/halfterm for 4 hours, take your own packed lunch. They 'over staff' it so that parents can chill & eat cake (one of the portage workers is a fab baker) and relax.
Also all parents are sympathetic to all sorts of SN there.

Competitive development stuff is crap :(

When DS was going backwards one mother in particular made me feel crap every meetup by going on about how wonderfully her DD was coming along. Other friends had DC the same age but never made me feel so miserable. I left most meetups in tears. I keep my emotional distance from her even now. Some people are just insensitive bastards, try and ignore.

lastly - you are doing fab, and your family too, keep on keeping on :)

pannetone · 11/05/2012 23:13

Cup - Bea is doing so much giving - helping lots of us to grow in ways that can't be measured on scales! I think she had the perfect comeback to the insensitive mum who made you feel low. It says it all when you wrote that Bea 'just woke up and stared at me contentedly like she does.' Bea knows what is really important and is helping us learn that too. Smile

Prayers for a peaceful and happy family weekend (and I will be praying for that other family who needed your respite place at the hospice...)

drivinmecrazy · 12/05/2012 00:42

WOW! just caught up on Bea's thread, and feel the need again to say how amazingly strong you are. Your three daughters wouldn't be the little people they are without you. I wish you strength and patience more than I have ever wished for anything for any one before.
Your selfless updates make such a difference to many of our days. It reminds us that any of us could be walking in your Heroes shoes.
Amazing little Bea is still here and enriching so many lives through the internet.
YOU GO GIRL!!! X

saffronwblue · 12/05/2012 02:41

Oh cup. Does that other baby have hundreds of people around the world who care about her and are learning about love and life from her journey? Dear Bea is on her own path and it is a unique one. I feel privileged to be a witness to Bea's development and your love and advocacy for her. I'm sorry the thoughtless mother made you feel bad.

You must be so proud of your older DDs and their amazingly mature response to a sad and disappointing situation.
I hope you have a gorgeous weekend together as a family.

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