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.





Can’t or won’t?

4 03 2014

As GM walks by the living room door she hears CD saying “you wouldn’t be cold if you hadn’t lost your fleece at school Lolly.” Unusually he sounds irritated. GM sighs … It is irritating. The mostly functional parents have had to replace so many jumpers and cardies, shorts and sports tops since September. Even a pair of (expensive) wellies.

It seems that Lolly is expected to be able to keep track of her clothes and equipment now that she is in year 1. The mostly functional parents have an on going conversation about whether Lolly can keep track. She is not as emotionally mature as many of her class mates, nor educationally. Developmentally she is probably about 12 to 18 months behind many of her peers. GM wonders if that is ‘all’ it is though, or whether there is more to Lollies apparent inability to keep track of her belongings.

At home she often looses her current favourite object or toy, and will have the bemused patents searching for days. She often puts things in a safe place and is then unable to remember where it is.  These things will often turn up weeks later, in bizarre and unusual places. Like finding the golden purse with current object of desire wedged between some DVDs on a shelf.  This ability to loose things extends to her most precious blanky and toy doddies. Her ratty, scratty holey blanket, that came home with her is no longer allowed anywhere other than home or in the car, due to the many retraced steps and waves of relief when it has been found.

After bed time CD and GM again mull over Lollies tendency to loose things. GM mostly believes that the loss of yet another pair of glasses is probably deliberate, but is not so sure about the clothes. They talk in circles, not really feeling that they understand what, if any, the problem is.
….
A few days later CD returns from Lolly’s parents evening meeting. Lolly is lavished with praise for the progress she is making in phonics, in particular how well she is doing with her blending.  CD tells GM that Mrs F is really pleased with the progress she has made, but .. But they continue to be concerned about Lolly’s ability to retain her learning. Not only learning, she has not seed to have internalised any of the classroom routines, and needs prompts to move between activities frequently. CD asked Mrs F to be more specific, and she described a particular daily routine. Every morning all the children in KS1 split into ability groups for phonics, with Lolly being in the reception group.  At the end the children return to their classroom, get a book and sit on the carpet to do independent reading for 5 or 10 minutes. Every day, Lolly returns to the classroom and will stand, confused, until the teacher or TA directs her to the books and carpet. Every day!  The mostly functional parents are quite shocked to hear that she has so little grasp of the class routines.  This seems to be much more significant than a penchant for loosing her jumpers.

CD delves into Lolly’s book bag … “This is some of the good work Lolly has been doing” he says, “and these are the forms we need to fill in for the needs assessment that they want to get in motion.”

GM goes to bed feeling quietly sad and bad. She wonders if they would have picked up on this earlier if LML’s significant needs hadn’t overshadowed Lolly’s?





The sound of candour

24 02 2014

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

mydaftlife

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 (

View original post 480 more words





Super star

20 02 2014

LML asks for a packet of crisps and objects when she is told “no”.  The previous day LML was in hospital having 3 baby teeth and 2 grown up teeth extracted. All the work that needed doing was carried out under a general anaesthetic. 

The wait to go down to surgery was over 3 hours and LML only started to wobble with the restrictions of being on a hospital ward for the last 10 minutes. Once in surgery GM’s confidence in her daughter was proven as LML sailed through having the surgical cannula fitted. (GM did cry when the anaesthetic took effect and her beautiful lively girl became unconscious!)

When the anxious mostly functional parents were called into recovery LML was not yet conscious. Gm gently stroked her daughters hand and told her they were with her … To the utter surprise of the staff, LML immediately sat up, saw CD and shouted out his name with joy! She soon settled back down, but was as she always is on waking .. cheerful, chatty and lovely. None of the dire warnings of fighting, crying and general grumpiness were displayed. LML was a star.

Back on the ward to recover she continued to be chirpy and cooperated with everything that needed to be done. She had her drink, ate her jelly and wotsits (together!), stayed on her bed, had a little sleep and was great when woken from that to go home.

CD and GM could not be more proud of their superstar girl.





Opposites

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.





“The work of my children.”

15 02 2014

GM has been hovering around the edges of the adoption social since coming across it at a conference back in November.   It’s a place for fellow and prospective adopters to link up and share stories and experiences. The theme for the weekly adoption shout out is the work of my children and this gets GM thinking.  There’s the work involved in raising Lolly and LML, this labour of love that is the main focus of the mostly functional parents energy. It is never ending and all consuming, but when GM thinks about the title it is the pictures stuck up in the hallway, the paintings and objects that litter the house, the school books and the tablet pictures that she thinks off. It is the work that the girls have done.

Over the week GM studies the pictures, painted piggy banks and ducks, the self portraits on the tablet, the collages and colouring books. The tale they would mostly tell, to a stranger entering the house is that it is inhabited by toddlers. Maybe a three and a half or 4 year old. LML and Lolly have just about reached the same stage as one another in terms of their mark making. The mostly functional parents are thrilled that both the 5 and 8 year olds have recently become much more deliberate in their mark making, indeed LML has started not only colouring in, but colouring inside the lines!! In colours other than black!!

It seems that maybe LML is eventually becoming interested in, or at least aware of, the product of her work as much as the process. Until recently all creative activities have very much been focused on the act of producing, rather than on the end result .. To the extent of having to battle LML for the biscuit mix, just to get some in the oven! Baking doesn’t seem to have moved on much, but in other creative areas LML and Little Miss are each making their own progress.

Both children seem to have taken a step towards understanding the written word, both writing their names over and over, repeating the read, write, ink rhymes (“nk, I think I stink! nk”). Lolly sits with the Which? magazine on her lap, pointing at different letters. “d d d dad”.

GM remembers drawing, colouring and making as a child and hopes that one day her children may be able to develop the interest and skills to enjoy this type of ‘work’. If only so that they could self entertain for more than a few minutes without the aid of electronics!








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