28 08 2015

A niece of GM is having a naming ceremony on Saturday for her baby daughter and the mostly functional family have been invited to the late afternoon party. GM received this message when she was a work, 24 hours before the party.

“Hi GM. How are you? I’ve been meaning to speak to you about tomorrow and Little Miss, it’s been playing on my mind for a few days that it’ll be too much for her. There’s going to be loads of kids and people she doesn’t know and I’m concerned about how she may react. I know that when she’s stressed she lashes out and may become violent towards the other children and I really don’t want that for her, the other kids or you. What are your thoughts on this? Xx”

GM struggles to get beyond the intense feelings of rejection, hurt and quiet despair to formulate actual thoughts.

Small things

28 02 2015

GM is watching Lolly at gymnastics, chatting with another mum. She has already explained that Lolly has trouble processing multiple instructions and retaining routines. The conversation moves on and the other mum asks one of the killer questions …

“How many parties does she have this weekend? We only have one this weekend but last weekend she had three!” Another mum joins in and the conversation soon moves on.

This gives GM time to scape her bruised and battered heart off the floor and put her sadness back in its box. Lolly has been invited to one party in this school year. LML has not been invited to any. For over two years.

The land of no

26 07 2014

“No LML! Nonono”

GM translates for her daughter “LML, be careful with the walking stick. It must stay pointed at the ground love. Yes that’s right, well done.” In the first few hours of their visit the “no’s”  come thick and fast. The interpretation is exhausting, but very much needed.

Much as GM loves her in laws, visits are always difficult for LML. GM has to remind herself not to internalise her daughters stress and not to take offence at Nan’s lack of understanding.

Still, GM finds that she smarts a little when LML is told she can have no more ice cream, when Lolly is tucking onto her second bowl.

LML is lovely. She is loud. She cannot do as she is told”. She does not understand threats of consequences. When she is stressed she does not stop moving. And nan just does not get it.

GM and CD manage LML’s behaviors, anxiety and stress as best they can. They model the scaffolding and support they give her, to help LML cope and to show nan how to help their daughter do better. GM sighs. Nan just doesn’t seem to get it.

Just that time of year?

16 07 2014

LML chooses to watch Something Special in the morning – the first time since GM doesn’t know when – specifically the ‘baby’ one.

After school LML goes to get her memory box out of the cupboard just before bath time.  CD tells her she can have a proper look after bath time.  He half expects that she will have forgotten as he takes it as an attempt to avoid  going in the bath; just another bid for control.  once she is ready for bed though, she goes to her memory box and explores the contents.  She recognises the number 1 on a birthday card and asks about cards that she received from her foster carers for her 1st birthday and her first Christmas.  She tries on the England (football) Team’s baseball cap which was a gift to her from her birth parents.  She rummages through the special gifts and items from her foster family eventually pulling out a tiny baby grow that GM added to the box to give LML some idea of just how small she was when she was born, and goes under the bed to dress her baby monkey in it.  All this whilst GM or CD make comments and observations about her early experiences, before she came home.

When they go downstairs for supper LML really surprises the mostly functional parent by asking if she can have the baby bottle.  They have kept one as sometimes Lolly will have a phase of revisiting the bottle, but LML has rarely shown more than a passing interest in it.  GM put milk in the bottle, and explains, as she always does, that mummy or daddy hold the bottle and she must lay on their knee if she wants some milk from it.  LML climbs onto GM’s lap and lays in her arms, way too light for an eight year old.  She suckles from the bottle and gazes at her mum, as she talks about how this is what she would have done if she had been there when she was a baby; about how LML was so tiny that she couldn’t feed from a bottle at first, but she would have held her and told her that she loves her, just like she is now. After a couple of minutes LML sits up and climbs down from her mothers lap, calm and ready for supper.  

Lolly quickly replaces her and goes through the same process, although she drains the bottle and clearly gets enormous pleasure from having teat in her mouth.  Lolly would have a dummy if she could and will always have her thumb or another item in her mouth, and there is clearly a sensory element to her desire for a bottle.  Lolly hasn’t asked for it for quite some time – certainly not this year, and LML never has – not once

GM is astonished by LML’s request.  Encouraged, astonished and hopeful.   

Days like these

6 06 2014

“No, no, no. NOOOO! NO! I don’t want it. Get off me. No! I don’t like my medicine. Noooooo. Leave me alone. I don’t want those tights. Get off me! Nooooo. NO! NO. NOOO. …”

GM holds the writhing, shouting, distressed and disregulated 8 year old on her lap whilst CD goes in search of leg/footwear options. LML has been in this state for about 10 minutes so far, and GM is quietly satisfied that she has managed to keep the yogurt and ADHD med mixture on the spoon. 

5 minutes later LML has had her meds and chosen a pair of black tights “to suit GM, ur mood” CD suggests to her.

In another 5 minutes the family are in the car on their way to school. The girls are happily warbling away to the ubiquitous “let it go” from Frozen. GM sighs deeply a few times, calming herself. CD pats her knee “your away day is going to be a doddle after that start” he says, smiling.

GM smiles back, already starting to focus her mind on the staff away day she is facilitating. The staff are in a very unsettled phase, due to changes in management and an information black out from the powders that be.  “Yeh right” mutters GM, taking another deep breath.


2 06 2014

“You loser! I’m going to hit you! You loser. Loser. YOU LOSER!” Rants LML.

The ranting and threats are a usual part of the getting ready for bed routine, along with the ‘being told no’ trials, any transition and general expression of frustration or fear.

It’s the language that has changed recently, and it worries GM.

“LML love” she starts, laying on the bed with her daughter, “where do you hear someone saying ‘loser’?” GM doesn’t really expect an answer, as LML finds this sort of conversation very difficult. 

“At school” replies LML with a slightly grumpy look on her face.

“Oh at school?” says GM, “who says that at school?”

“The boys.” comes the answer, quick as a shot.

“Who do they say it to sweetheart?”

“Me” comes the obvious answer.

“How does that make you feel love?” GM asks gently, again not expecting an answer.

“Sad” comes the reply.

“Yes it must make you sad sweetheart” GM says, searching for the next words.

“I farted on your hand mummy. I farted!”

The conversation moves on.

Ripon Cathederal

25 05 2014

“Ooooh, candles!” exclaims LML.

GM rapidly explains that they are lit by people to remember friend or family who have died. She knows that LML’s first impulse will be to blow out the candles. “You can light one for you twin if you want to” she suggests, hoping that lighting a candle will be more appealing than blowing them out.

With just a little help LML lights a candle, places it into the holder and steps back.

“I wish you could come back” she says.

GM sighs, amazed that she has expressed so much, proud of her daughters acknowledgment of the loss of her two day old twin.

Bye bye ganma jay

24 03 2014

GM has the weekend planned with military precision, as CD is presenting a course all weekend. Lolly has attended her gymnastics class and picked up her new glasses (pair 5!), LML has managed to sit and play on the tablet for the duration of the class and they are at last heading for her favourite place to play.

GM and the girls are slowly making their way up the hill with the scooters towards the skateboard park when Lolly shouts out “Daddeee!” Both girls abandon their scooters and run down the hill to his waiting arms.  GM is slightly confused to see that it is indeed CD, and finds herself dismissing the possibility that absolutely no one turned up for the training. As he approaches she sees that he looks upset, he reaches her and sobs an incoherent sentence as he gathers her into his arms.”Oh no” she says, grasping some of what he is saying, “Your Dad?” .. Her heart is in her mouth.

“Jay” he gasps out, “your mum”. GM freezes. She hears the rest of his words. Her sister had been trying to contact her, and eventually had got hold of CD. He had come straight away. GM walks back to the car, leaving CD to get the girls and scooters sorted. She manages to drive them all home before crumbling.
The girls go straight out into the garden to play when they get home and GM sits in the dinning room crying.  Lolly comes to her mother and strokes her hand, as GM explains to her that Grandma Jay has died.  Through out the day they talk about what that means “Grandma is gone, she is in our memories, but who she was is gone”, ” Now?” Asks Lolly repeatedly, “Ganma poorly?”, “No Lolly, she isn’t poorly any more” GM reassures her, feeling the relief of that herself, mingled with her sadness and heartache.

The sound of candour

24 02 2014

Amazing woman, devastating events. Fighting on in the face of tragedy. Inspirational.


Quiet day yesterday. Reading through the final report. A combination of analytic focus on content and sickening agony. I felt like uploading it, pressing ‘publish’ and walking away. Sick of the struggle we’ve had to get to this point. We all are. It’s been a distressing, relentless, time consuming (costa del fortune) experience. There have been so many battles with Sloven Health (SH). So many times I’ve received emails or phone calls, at work, home or elsewhere. Relaying developments, steps backwards, shifts and delays that have made us howl and weep and rage beyond rage. I feel battered, embattled, crushed and physically shrunken. I know Rich feels the same.

LB died. And he shouldn’t have. As simple as.

Our beautiful dude. In an NHS setting where we thought he was safe. A systemic failure in the most basic provision of care. Yet SH were horrifically quick to badge his death (

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18 02 2014

Lolly sits on the pillow on the hospital bed. Every so often she whispers something to GM, but mostly she draws in her new note pad with her new felt tips. These were bought in a hurry, as a mix up with childcare meant that Lolly had to come to the hospice with GM to see Grandma. There was meeting scheduled with the discharge nurse and Lolly sits quietly throughout the whole 45 minutes.  GM is full of praise as they leave, even when Lolly thunders down the corridor, drawing long glances from the numerous staff.

Later as LML recovers from a hard days playing by focusing on the lap top Lolly builds a bed and lays on the floor. “Me poorly G’anma” she states. GM smiles at her daughter and leans forward to stroke her face. Lolly captures GM’s hand and kisses it passionately before letting it go and picking up a piece of ribbon. “My cannula” she announces and lays there unmoving. GM points out that grandma was actually up and awake today. Lolly shakes her head, “G’anma poorly!” she insists and continues. GM nods, patting her hand.

GM sighs as she draws away, a wave of sadness washing over her. Her strong, robust, fiercely independent mum has become a forgetful elderly woman, struggling with the final stages of COPD. She is naturally frightened and deeply anxious as the hospice assessment has confirmed that she needs full time nursing care .. they will only discharge her to a nursing home.

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