The sound of candour

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 (

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Super star

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

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.”

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!

Spec’tacular

Lolly really does not want to wear her glasses and now she needs an eye patch. The mostly functional parents have read books with roll models wearing glasses with her. They point out the people Lolly knows and likes that wear glasses.

GM has decided it is time to bring in the big guns …

Macabre?

GM runs from bed to bed, playing the doctor to the girls patients.  Lolly puts the bandage under her nose and days “doctor. I’m Grandma J”, “Oh, is this your cannula? Like grandma’s” GM asks. This confirmed, the game progresses, involving inhalers, the need to sit up, struggling to breath and a very good simulation of being confused. Indeed, Lolly acts out her and GM’s visit to the hospice that GM’s mum is currently in. GM plays along, feeling slightly uncomfortable, but suspecting that her discomfort is more her bag, and not to do with the play being ‘wrong’ in any way.

The play moves on, leaving GM feeling slightly confused herself!

Naming

“Have we got any tiger bread mum?” asks LML.

GM is expecting the question, as it is the same every morning. “I don’t think so” she replies groggily, “I’ll see what dad got yesterday.” She holds up the remains of the french stick and LML nods and asks the next standard question.

“Can I have the end please mum?”

GM cuts a few inches off the end of the bread cuts it on half and slavers butter on it. She passes the plate to LML who asks what type of bread it is. “Its a French Stick” GM says.

“Hmmm, French Stick” repeats LML, tucking away another descriptor for a type of bread, to add to her ever growing list of important bread.

The eyes have ’em

GM receives a text from CD “Erm…. Um…. (Whispers tentatively)… Lolly lost her glasses in school today”

GM can’t delete the expletive that bursts out, and heads in the office turn in her direction. She explains that these are the new (2 weeks old) glasses, that were fixed last week, after Lolly pulled one of the arms off. These replaced the last pair that were broken and mislaid repeatedly, so were replaced with a more comfortable, better fitting pair. There were the other two pairs as well of course, one run over in a car park, the other ‘accidentally’ dropped in a river.

GM is just glad that after the last visit she told CD (in no uncertain terms) that he would be going to the opticians the next time!