Wednesday, 25 February 2009


Today has been a frustrating day, full of petty annoyances.

Having to wait in for the engineer from the company which insure our hoists to come and check the work that the engineer from the company which supply the hoists did a few weeks ago.

Waiting in again for the wheelchair repair company to bring Little Fish's new wheel, an appointment which has been rearranged several times - firstly as insufficient parts ordered, secondly due to weather, thirdly due to weather again. The engineer turned up today and discovered that he still did not have all the parts necessary, so gathered Little Fish's wheelchair up and threw it in his van, where it will now sit until he does have the full piece of kit.

Turning the ten minute walk-to-preschool-drop-child-off-walk-home-again run into a much longer walk-child-to-preschool-move-all-waiting-parents-away-from-door-of-disabled-loo-cath-child-then-drop-off-and-try-to-explain-urodynamics-to-uninitiated run, followed by somewhat truncated free time due to need to return to preschool early to do the next cathing session. The actual process takes around two minutes, but having to be somewhere to do it every two hours makes getting anywhere else to do anything else at all rather tricky.

Little Fish turns four next month, the continence service around here will supply free incontinence supplies after a child's birthday. I phoned the health visitors to get this set up. They told me to phone the continence service direct. I phoned the continence service. They passed me on to the continence nurse. Who passed me back to the health visitors to get a referral done. Who then didn't know how to do a referral, and then did, but needed to fill in a lengthy form, and needed to phone back another three times to check different parts of that form.

A long chat with the school nurse (not for preschool) and the realisation that training school staff in cathing LF is not going to be a quick process either; I am going to be tied to two hourly visits there as well as to preschool until at least Easter.

Several chases around the house to pin down both cats and pump them full of pills, spray one full of steroids, etcetera.

All of us home finally and a speech therapy session for Little Fish sabotaged by LF who refused to cooperate in any way, shape or form.

And then this news

I've lost one child. Every family is different, but I do know a little about how it feels to have a child die. And now I have one child who is the same age as little Ivan, with severe cerebral palsy, severe intractible epilepsy, and who has had a rough few months. I was holding her extra tight tonight, but she objected and wanted to go to bed and listen to music. So she is cooing in bed, and I am writing this.

My heart goes out to Mr and Mrs Cameron. There was a fair amount of publicity over Goldie's death at the time; nothing like the mass news-fest happening at the moment, but more than enough to turn our loss into public property. I hope and pray that the Camerons can switch off the televisions and silence the radios and hide the telephones for a while whilst they adjust to this new and emptier world. And I sincerely hope that they will be protected from those who would try to tell them it was all for the best. A family mourning the loss of their precious oldest child who was much loved.

I'll take my frustrations, please. I'll keep the phonecalls, the appointments, the running around achieving nothing and just trying to catch up with myself. It is infinitely better than the alternative.


Michelle said...

I went to school to cath also. What I had to consider was How many people do I want to cath Emily? I wanted 1-one person. I didn't want several people working on her private parts. So, if Emily's assistant at school was sick I would either go cath her, or she would stay home from school. After a number of years Emily qualified for nursing care again and now her nurse goes to school with her.

Michelle & Emily

Tina said...


Anonymous said...



mq, cb said...

"And I sincerely hope that they will be protected from those who would try to tell them it was all for the best".


To be fair, I haven't seen any comment like that. In fact, much of it focused on the death of a much-loved child and on how unimaginably awful it is to lose your child, full stop. Jenni Russell expressed it best in The Guardian and also dared to address the subject you mentioned, and very well too I thought.

"The public discussion of Ivan had its limits, though. One friend of the family says that what people don't realise is that the couple have long lived with the knowledge that Ivan might die at any time. His health was so frail that any fit or minor illness – and both were frequent – threatened it. But that knowledge won't have made his death any easier to bear.

"People frequently speak of the death of someone who is sick or disabled as a release. It's more complicated than that. Someone who is confused or in pain can still feel the worth of life, and have moments of real joy. And even if their lives are a struggle, losing them is still shattering for those who love them. Our love for others, and our tenderness towards them, is not determined by whether they function just as we do".

Mr Cameron expressed this so vividly when he spoke of his son. In a piece on the BBC News website, one woman wrote that her severely disabled son had taught her the value of unselfish love. I thought of you when I read that and of how you had said that Mog brings Love and how, for the Camerons, their son must have been just the same.

Tia said...

I've not seen any public comments along those lines either - for me though it was friends and family who tried to offer comfort by expressing sentiments like that. Which was actually more hurtful than if it had been the world at large.


Sara x said...

My heart is with the Camerons's, i know that pain and i feel it each and everday. May their faith whatever it may be give them strength. xxx

Robyn said...

I too hope they get some peace and time for themselves.


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