Perspective

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.
Tia