Whatever Happened to Mog?

Because, however much she might wish it, the world does not in fact revolve around the Little Princess. She exists, not in isolation, but as a part of a family, and a wider community. And, despite her fairly complex medical issues, those around her are used to thinking of her as the more straightforwards child. She is, after all, reasonably independent (and utterly determined), she talks, she eats, she goes to mainstream school. Oh yes, she also needs mechanical assistance to breathe, wee, drink, and other minor things like that, but on the whole we tend to think of her as the healthy one. Comparatively.

So discovering that she now needs brain surgery before she can have the spinal surgery she needs to have before she can have the op she actually wants - the one(s) that will give her independence in the loo wasn't exactly the best of news.

And, naturally, the priority is to get her through the op and early recovery, and she needs Mummy by her side for that. Which brings us back to the whole not existing in isolation thing. Much as tLP may think it, leaving Mog in a cupboard somewhere isn't really an option. Not for a whole week, anyway.

And here's where it gets good. Helen House was always going to be our first option; Mog knows the place, the staff know Mog, and I can relax knowing she is safe and under the eyes of the whole medical team there.

But the op was brought forwards, and the hospice is very busy, and whilst they could offer us four nights wrapping around the op, Mog was homeless after Friday.

And our amazing Community Nurse (with a bit of help from some of the more senior staff in various statutory bodies) arranged for Mog to go to our local Barnados/SS/NHS respite care home for the weekend.

And, my previous decisions not to investigate it as an option even when we were dropping with fatigue a year or so ago had to be overturned, and friends with equally complex children reassured me how well their daughters were cared for there, and thinking it was probably better than sticking her in tLP's cupboard, and remembering that it was virtually in the hospital grounds, I was happy for her to go.

And then the op date was brought forwards even more, and instead of Mog being in HH two nights before the surgery, suddenly her stay did not begin until the day itself. And Mog decided to celebrate the news by starting a chest infection, with the interesting refinement of needing oxygen after around 3.30pm.

So here's where friends stepped in, with one friend giving up a Monday to come and care for Mog, and another racing back from work and swapping vehicles to taxi Mog and Grannie to the hospice, ensuring Mog was always with someone competent to suction (which is, as a rule, the best way to ensure she doesn't need it).

And friends stepped in again, to ferry Mog from hospice to hospital, with more friends bringing food and child friendly entertainment. And other friends refused to be insulted by having visits rejected, and continued to pray for a decent recovery.

And family stepped in to sit with whichever child I wasn't driving around to hospital or respite. And to visit tLP every day so I could grab coffee. And to feed the cats, sort the laundry, count the fish, fetch forgotten pieces of equipment (even carrying commodes on public transport).

And tonight, when respite is closed and hospice is full, Ronald McDonald has stepped up, and Mog and I have a bedroom just a 2 minute walk from the ward, and all three of us can be under the same roof for this last night before tLP is discharged.

And Mog informs me she has had a lovely tine and would like to go back to Viking House one day. And I don't think she feels as though she has been shuffled about for our convenience at all, more that she has had an exciting week.

And I am thankful to God for giving her such a lovely time, and surrounding her with carers and nurses not phased by the need for nebs at odd hours of the night, for keeping her stable even when ill, and out of hospital. For knitting tLP's head back together so quickly and for her amazing ability to shrug off major surgery. For all the friends and family and professionals (including some who may fall into two or three of the above categories) who have been helping us out and the others who have offered but so far been surplus to requirements.

And Mog is pleased to have had such fun, excited to see tLP again, and thinking that she would like some new music for her Birthday next week. I think we can manage that.

Tia