Sunday, 28 July 2013

Because they're growing up too fast

tLP brought a doll to church today, a doll which was appropriated by the very delicious little boy sitting next to us, who spent the service delicately identifying the doll's various facial parts, and very sweetly playing "Round and round the garden" with the doll's hand (and then giving his mother heart failure by body-surfing the doll, which, under small child, looked far too similar to the very real baby who had been on that spot on the carpet a few minutes earlier).

tLP abandoned the doll in her quest to run around outside with church friends, so doll hitched a lift out of church and into the hall on the back of Mog's chair. To quote our esteemed service leader this morning "Tea and coffee are good, but worshipping God is better." I wonder if the worship might be better if the coffee came first? I guess the queues for the loos might be longer...

I digress.

Mog and I entered the hall, I picked up my coffee, and turned around to someone nodding at Mog and the doll perched behind her, passing comment that "You've got two babies today I see." Confused, I pointed out Mog was 11, hardly a baby, and we had a conversation, somewhat startled on his part, as he hadn't realised she was the same age as his son. Don't think he quite understood that she wasn't simply an 11 year old baby though.

She isn't. Even when she's asleep, peacefully and beautifully asleep (bar the sarcastic seizures which twitch to order whenever anyone points out how peaceful she is), she's very definitely not a baby any more.
And nor is her sister
I might still have thought of them as babies for a while

Because let's face it, that's adorably babylike.
And this is just silly.

But whilst she might still enjoy cuddles on my lap, and whilst she might still need certain care not dissimilar to that I might give to a baby, I know of no baby who can be as insultingly sarcastic as Miss Mog, without ever having to utter a word aloud.

Here's to the next eleven years!

Thursday, 25 July 2013

Bury me in paper

Because I'm currently attempting to deal with a pile approximately six foot deep.

A while ago, I realised the girls' passports were on the point of expiry. Being the active, coordinated, organised person that I am, I waited until they had both completely expired, and then filled in various forms online to begin the renewal process.

I then put the passports back with the savings books, made a mental note of the fact Mog's SGO paper wasn't with them, and waited for the prefilled forms to arrive in the post.

Meanwhile, letters arrived warning me the girls' blue badges were due to run out, and inviting me to apply early for replacements, as they could take ten weeks.

These I shelved with the passport applications and tax credit stuff. And tax return stuff until I had a chance to get into town with both girls for passport photos.

Interlude for spinal surgery, convalescence, and a sick Mog.

And then a sudden, panicked realisation that the blue badges (disability parking permits) were due to run out next week, and that the 8 week renewal period would not condense itself into 8 days.

Fun fact: to renew an application for a blue badge now requires more documentation than a passport renewal.

For tLP's passport application, I must supply one form, correctly filled in, one expired passport, two photos countersigned on the back, and a fat cheque for sum as yet undetermined.

For tLP's blue badge renewal, I must fill out one form online, and consent to the powers that be contacting her school for proof that she really does live here. I must supply proof that she she is physically disabled. I must supply a passport photo. And a birth certificate or copy of her adoption order. And a cheque for five times as much as the badge used to cost.

For Mog I need also to supply a copy of her special guardianship order for her blue badge, and the original SGO for her passport.

Blue badge being more urgent than a passport, I decide to focus on these forms first. They take me three days. I am invited to pay electronically. I do so, only to be told online payments (the one they just collected all my credit card info for) are not possible. Frustration.

So, Blue Badge paperwork eventually collated, 14 digit tracking order attached to each pile of paperwork together with note explaining special guardianship. And then the memory that the SGO paper was not with the passports.

Nor is it with the other pile of important documents. Not in the filing cabinet, not in the emergency paperwork stash behind the computer, not in the Very Important Stuff drawer in the dresser, not in any of the book get the picture.

A thought. We always take it with us when we travel abroad; it is the proof that I am one of Mog's parents. The passports came home but the SGO did not; could it be with my friend and travel mate's paperwork?

Problem. It's been six months since we travelled, and friend has some memory problems at the moment.

Amazingly; friend puts her hands on the SGO within 2 minutes of my phone call, and brings it round.


Paperwork finally complete, I am about to seal the envelope, when I realise sending the SGO off with the blue badge applications will mean I cannot apply for a passport for another 8 weeks. Not that we have travel plans, but I do like to think we might one day.

So a further delay whilst we run to the library to photocopy essential documents. And finally, finally, the Blue Badge paperwork is on its way.

Meanwhile, I attempt to fill in the passport applications. And immediately manage to invalidate one form by signing in the wrong box, and the other by putting a Date of Birth instead of a Date of Signing. Deep sigh. And off to the post office for new forms.

So, new forms signed. Friend primed to ID the photos. Two neat envelopes with everything we need. Just need to add the expired passports.

The expired passports which I haven't seen in any of the mammoth paperwork hunt I've done over the past couple of days. The expired passports which I put in a safe place with the savings books.

Anyone seen them?

And will I find them before I lose the application forms, or before tLP runs over the photographs again?

Can it please be September soon?

Sunday, 21 July 2013

The gift of exhaustion.

Mog's been ill. Still not right, but much, much better with a couple of slightly cooler days. And after a not-too-bad day yesterday (no CPAP, minimal oxygen, only three nebs and less than half a box of suction caths), I thought we might be over the worst of it.

Until she went to bed.

I didn't see a time beginning with 12. But I was up to her at 11.40, 1.04, 2.14, 3.33, 4.12, up anyway at 5.15, and up to Amana at 6.06. * It's safe to say I was more than a little tires when our carer arrived at 7.

So we dragged ourselves off to church, where I missed most of the service thanks to a very noisy Mog, and I sat on a green chair feeling very tired and very sorry for myself and really rather blue. I do a good line in woe-is-me. It's not attractive.

And we sang to God, and I realised then I was sitting with dear friend's who would probably give an awful lot to be this tired for the same reason again. And I thought back to the help I've had this past week, from another friend who would swap months of sleep for another night caring for her son. And friends nearby, and friends further away, all of whom no longer have this "burden." And I was ashamed.

This tiredness; I treasure it. In the silence of the night I can smooth wrinkly sheets and smell my daughter's beautiful soft skin, and I still get to make a significant difference to her life by relatively small actions. A slightly awkward snuggle as I wrestle with the nebuliser, shared smiles at a successful suction, the satisfaction of hearing hoarse breathing ease as I find just the right position with just the right balance of pillows and supports. This - this is every bit as memorable and even more important than the Disney trips, the rollercoasters, the Big Moments. Because this is the every day minutiae magnified until not even I can miss it. This is why we are together, how we came to be mother and daughter; this is what I was created for. And there is nothing more important than this.

And so we go home, and I get the working nebuliser (yep, killed the other one), feed tLP and stiffen my own spine to heft her from one wheelchair to another; life goes on and I will welcome all of it.

And then tLP turns around and asks me - mid treatment - "When's she going to be dead?"

And I take a deep breath (and Mog doesn't, but she will again at some point), and try to reassure both girls that she's just poorly. But we've had too many "S/he was poorly....and then" friends this past year, and we're all scarred.

She is just poorly. And tired. And we are managing alright at home, with lots of help and cooling fans coming. So we talk about how, most of the time, getting poorly ends up with getting better again. And tLP asks to make chocolate brownies, and so we do, and this - and eating them - was also what I was created to do. With incredible expanding stomach to protect my daughters from the same fate.

I'm in bed now. Just waiting for the washing machine to stop spinning, so I can yank out anything which needs ironing, and hang it up before our ironing lady comes in the morning. Because here's the thing - yes, I'm tired. But I am not alone, and we have our ironing lady and our cleaner and our mower-of-dead-lawns-and-gentle-lecturer-about-the-importance-of-watering guy. And so there's very very little I actually have to do, beyond caring for the girls. Which is good, because there's very little else I'd rather be doing. God knows what He's doing.

Mog's coughing.
Must go.

*side note: wish I could remember useful things like sort the blue badges before they both expire next month, fix the printer, find the stapler. But instead I am blessed with the ability to close my eyes and see all the times I was dragged out of bed. Not counting the leaf-on-the-head special cat treatment.

Tuesday, 16 July 2013

One of Those Days

A day with a lie in, as Mog was in respite.

A day with a nice appointment in the morning, a hospital appt in the afternoon, a lazy evening (see above re: Mog in respite).

A wheelchair accidentally purchased - looking to be just right for tLP, once she has permission to self-propel once more. Some chatting and sorting of payments, courier, etcetera and so on.

And then.

Mog unwell in respite, being well cared for and no need to panic, but thoughts and phone calls to try to sort things out.

News from another friend about the tragic and unnecessary death of another young adult with learning disabilities, in a different and unrelated bath accident. People, baths are dangerous! Enjoy them, use them, make the most of them, but employ common sense and basic health and safety protocols around them. Please.

A friend's daughter unwell, and another friend also struggling. More unwellness from Mog, and a request to visit before the afternoon's hospital appt.

A quick trip to respite to see a Mog on CPAP in the middle of the day, with new meds not helping and heat definitely hindering. A decision to try to hurry tLP's appointment, and then to fetch Mog and bring her home. Not because respite can't cope, but because a middle of the night crisis is easier to deal with here than it is eight miles away.

Off to hospital, and squeak into the last parking space. Into a suspiciously empty outpatients department. Oops, wrong hospital. Off to children's hospital, now 20 minutes late, but never mind; clinic is at least 90 minutes late, so that won't make a difference.

Back to Mog, scoop her into the bus, enjoy the air conditioning, and crawl home through the rush hour.

Arrive home to find nurse from respite has beaten us there, and is waiting to help us unpack, and sort Mog. Hurrah!

A different kind of semi-relaxed evening; Mog "not right" but being supported by very nice nurse. Who is also managing to entertain (or be entertained by) tLP. Carer turns up to help tLP too, and I sit down to catch up with the rest of the world. And discover a message about this morning's nice and exciting meeting, which had completely slipped my mind. Oops.

Many apologies.

Girls in bed, new meds given alongside old, and Mog settled, ish; asleep but very very not right. Still, her SATs are better than my friend's daughter's; and if her resps are better than Mog's, that's probably because she has a ventilator not just CPAP. It's the kind of contest we like to win, although we'd quite like it if there weren't a loser.

And for now, the house is quiet. So I need to make the most of that. If anyone was expecting me to have done anything today; I haven't. Sorry. Here's why.


Tuesday, 9 July 2013

Mog's Sunday.

It was a ROSY Sunday; the annual picnic for ROSY families. Beautiful surroundings, bouncy castle, tattoos and balloons, Soundabout, and children, children everywhere. Oh, and peacocks.

Mog wanted to stretch out on the soft green grass, but wasn't interested in joining in with anything else. Soundabout - one of her favourite activities - ignored completely, not even the hint of a flicker of a smile as Soyndabout Steve sang and played for her. Perhaps she, like me, was rather too aware of the huge number of Soundabout children missing from the gathering. Empty chairs. A lovely afternoon, beautiful weather, good friends, oodles of cake. But too many missing children this year.

And then time to go home, ad for complicated reasons to do with the occasional apparent injustice involved in being the youngest child when the older one has finished exams and left school, combined with transport issues, it was necessary to call in and visit some puppies on the way home.

I didn't bother unloading a non-responsive Mog from the car. She'd opted out of everything else, wasn't talking to me or being particularly present at all, and had been enjoying a fine game of seizure tennis with a friend of ours earlier in the day.

But after tLP and our friends had had their puppy fix (ok me too, seriously people, is there anything cuter than a pile of 8 week old puppies all scrambling for food and love?), one little puppy was brought out to say hello to Mog.

And non-responsive, mostly absent Mog left the building, to be replaced with a very enthusiastic happy smiling utterly absorbed 11 year old, who was completely besotted by the pile of scrumptiousness attempting to lick her chin.

And then we callously returned the puppy and drive home. But Mog remembered, and wanted me to make sure that school knew so it could be her news item.

And now both girls are ganging up on me and demanding a puppy. It's not happening. We are not having one. However much tLP makes bambi eyes and Imi shouts her silent yes.

But I know she enjoyed the snuggles. - just see the difference between Mog with puppies, and Mog with perfect afternoon full of Mog-centred attention and activity.


Sunday, 7 July 2013

In my little garden.

This house is definitely ganging up on me. Currently, it's the computer playing up, having added refusal to recognise the keyboard to refusal to print anything.

This means picture posts have been few and far between, blogger app not being willing to allow me to assign any kind of order to uploaded photos. But eventually, the choice becomes, blog with the photos out of order, or call time on the blog and retreat to a corner somewhere.

So here, in an annoyingly out-of-sequence fashion, is the story of tLP's garden.

A friend and I went out to a garden centre one day. And found a rather lovely raised bed. We thought this might in fact entice tLP away from the iPad and into the great outdoors.

It did.

Sadly, it came as a flat pack, with no assembly instructions, and no handily marked holes for inserting screws.

TLP and I spent a frustrating evening collecting blisters and achieving very little.

Then a friend came to our rescue and managed in 15 minutes what we had not managed in several hours the night before. Hurrah.

So tLP and I filled the new garden patch with soil. Lots of soil. 120 litres of all purpose compost, finely mixed with enough water to turn it into a slightly solid slurry (say that six times swiftly). And then tLP planted her vegetables. Purple broccoli, sugar peas, round carrots, and a giant strawberry plant.

And the sun shone, and the watering can moistened, and just two days after planting, the strawberry plant yielded its first fruits. And now tLP is gathering 1-2 strawberries a day. And one day I'll get a picture of a ripe one, freshly picked, but for now she's eating them as soon as she can reach them. Which is good too; anything which gets her eating something vaguely healthy without complaint is a Good Thing.

The peas are winding their way up some seriously abbreviated canes, the carrot tops are waving freely, and the purple broccoli is a very defiant green still. Planting density is around 9 times what's recommended. But it's just outside her bedroom window, and she can see it from her bed, and she loves it.

Here's hoping the vegetables grow as nicely as the strawberries. Question for those in the know; I can see for myself when the peas and broccoli will be ready, but how does one check the progress of the carrots?



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