And God Said...

Tia said "Hurry up, come ON, finish that breakfast, wee faster, we're going to be late"
And Little Fish said "Why?"
And Tia said, "Because we don't have our van, the bus will be slow, we need to be leaving now"
And God said "Calm down. You'll be on time"
And Tia said "But we're always late for urology, we'll miss the bus and there won't be another one for 20 minutes and there won't be space for a wheelchair and we'll be late and it won't work"
And God said "I created Heaven and Earth and held it in the palms of My hands. Trust me"
And Tia said "Hurry UP, Little Fish, we're going to be late"
And God said "Fine, do it your way then".

And Tia ran with Little Fish up the road to the bus stop. And God sighed. And Tia and Little Fish then waited at the bus stop, panting, until the bus arrived three minutes later. Precisely the time it would have taken them to walk it rather than running.

And there was space on the bus, and the driver dropped the ramp down, and Tia and Little Fish wheeled onto the bus and sat down. And the bus crawled its way though spectacularly bad traffic, and Tia started fretting again. And God said "I will get you there on time", and Tia said "yeah but", and Little Fish started crying over the mad rush of the morning.

And in the fullness of time, and a full ten minutes before the appointment, the bus pulled up outside the children's hospital, and Tia and Little Fish disembarked, and thanked the bus driver and God. And God sighed again, and God said "Trust Me".

So Tia and Little Fish made their way to outpatients, where Tia asked if Little Fish needed an ultrasound before the appointment. And the receptionist looked in the notes and said "no". And then the receptionist phoned ultrasound to be doubly sure, and said "no" again. And Little Fish said "Why?"

And then the outpatient nurse arrived to do a weight and blood pressure and urine sample. And then the clinic nurse arrived to tell us we didn't need surgery. And then, eventually, the doctor arrived, and told us we did need surgery, and asked us why we hadn't been to ultrasound. And great was the wrath of Tia.

Tia and Little Fish went to ultrasound, and sat in the waiting room there. And sat. And sat. And finally they went through, and an ultrasonographer squeezed gel onto Little Fish's stomach, and measured her bladder. And Tia cathed Little Fish, and extracted approximately double the volume of urine the bladder had just been assessed as holding. And the bladder was scanned again, and found to be empty, and so Tia and LF celebrated their cooperative cathing abilities. And the kidneys were scanned, and found to be working correctly. And Tia breathed a sigh of relief, and God said "Trust Me now?" And Little Fish said "Why we 'ere?"

The two then said in the waiting room, waiting for a letter to take back to the doctor. And as we sat, and waited, Tia began to fret about the lateness of the hour, and an imminent appointment in a different town. And God said "How long is it going to take? Trust Me". And Tia said "I don't have much choice do I?" And God said "Trust Me". And Tia phoned the next appointment and confirmed their attendance and apologised in advance for lateness. And God sighed. And LF said "is it lunch time yet?"

The letter arrived, and the two delivered it to outpatients. And sat. And waited. And explained, politely, to the nurse in charge that if they didn't see the doctor in the next three minutes, they would have to leave without seeing the doctor. And they saw the doctor, and the doctor said "All fine, goodbye", and they left the outpatients department, just missing the next downwards moving lift.

And God said "I will get you there on time, stop fretting"
And Tia said "we'll never do it by bus, we need a taxi"
And Little Fish said "I not wanna go in a Naxi I want Dinner at a Dinner Shop why we goin' inna Naxi car?"
And the taxi driver said "Oh I remember that phase well with my own children"
And Tia thought, but did not say "Less chatting, more driving, we're in a hurry"
And God said "You will not be late. Trust Me"
And Tia breathed deeply, and let Little Fish do the backseat driving, and remembered she only had £4.73 in her purse and asked the taxi driver to go via a hole in the wall machine.

And the traffic was bad, and the roads were slow, and the lights were red, and Little Fish did not stop asking "Why?" And Tia breathed, and God said "Trust Me", and the taxi arrived in Abingdon 17 minutes after leaving the hospital.

And Tia paid the taxi driver and ran into Budgens to buy yoghurt for Little Fish's lunch. And in Budgens they found LF's 1:1 from preschool, and she took LF into preschool ready for her next appointment, and Tia finally had time to notice what a beautiful day it was.

And God said "Told you so"

Tia

Aimee Mullins

So tonight, this is making me think.


I can't see Little Fish using prosthetics, but I wonder what her future wheelchairs might bring her?
Tia

Succinct, and slightly random*

OrderOut of chaos.
And Order
In the midst of chaos.
Tia
*Thanks to L who doesn't read this but thinks she will one day, and who summarised my communications with her in this way recently.

Bags

We have lots of bags in this house.
Handbags
Toy bags
Shopping bags
Feed pump bags
Lunch box bags
And school bags, and swimming bags, but the bus came before I'd finished clicking so kindly use your imagination for them. You get the point though; this is a house of many bags.

So why does Little Fish reject the many beautiful bags we have and choose to carry her baby's necessities in this Budgens bag?(and why, incidentally, is her baby wearing LF's slippers as ear muffs?)

And setting aside the reasons (I'm sure they're excellent) why it is necessary to transport a Ninky-Nonk, a toy toaster, and the tap from her toy kitchen in the first place, why this bag?
I'd tell you it entered the house by way of a carer or babysitter, or was blown in by the wind. But I'd be lying.

By popular demand, two more photos from yesterday's party
Tia

Another Day, Another Party.

Happy Birthday!
If yesterday's party was an adult party with plenty of children along for the ride, today's was a children's party with abundance of adults to help it along.

Cake
Rice Crispie Cake!
And children's games
And chocolate!

Party dress and wellies; that's my girl.

People who started out as professionals; nurses, teachers, therapists. And who somehow became friends along the wayA beautiful afternoon. A room packed out with people wanting to share the day with one small boy and his family. Children and parents, friends and family.

One small boy turns 5. Not much to the world at large, perhaps. But the world and more to those who know and love him.
Happy Birthday "That Boy"!

Love,
Tia and the girls.

Party!

Two pictures from Red Nose Day yesterday; Mog getting her groove on
And Little Fish, who had been annoyed about the fact that she wasn't at school so did not require fancy dress, getting over her annoyance by taking charge of our carers' record book.Fortunately there was further compensation in the form of a delivery, and Little Fish is now the proud owner (and wearer) of these:
Makka Pakka Pants!One very happy little girl, emulating her Uncle Graeme (no, he doesn't wear Makka Pakka Pants (or at least I don't think he does, and if he does, I don't want to know!); but at a similar age he took a similar interest in underwear and had a similar penchant for sharing his with the world. If you know him, ask him about the Christmas Boxers).

That was yesterday. I'm trying to catch up with myself, so here's today too.

I was organised today. It doesn't happen often, and it won't happen again any time soon. But for once, I had a vaguely kind of workable plan for the day, culminating in getting us out of the house, all polished and dressed, and ready for a properly smart impressive party this evening.

We started with our normal morning stuff.


We were very planned. Mog decided to take me at my word, and when I said "you need to have a bit of a stretch this morning, it'll be a late night tonight", she promptly refused to get out of bed until 2. So when she did finally get dressed, it was straight into her party outfit, and just in time for her birth sisters to come over and sort her out with a pretty hair do. I think it's safe to say Mog liked the idea of a party.

Little Fish decided a bath would be a good plan, and so she got dressed nicely early too. And also had her hair styled at Mog's Sisters, inc. She then decided it was time to go, and set off out.And was only foiled by a lack of knowledge as to where exactly the party might be, so condescended to rejoin us in the house.A process which takes some time when you have small wheels and a long ramp.
But she made it eventually!


One or two minor hitches; it occurred to me shortly before we were due to leave that I wasn't entirely sure whether the party was at the Hotel in OurTown or at the same Hotel in OurTown Road, Othertown. Texted a friend to find out, and then decided to do as much of our going to bed type things as we could, to make things easier post-party.

And that's really where it all started to go wrong. Take one small child, remove waterproof padding and then discover you have mislaid the replacement, and that's when you'll have the pleasure of discovering whether you can tumble dry a silk dress. Turns out you can, even though the label says not (phew!) but I wouldn't recommend it for peace of mind.

Plonk small child (too late) on potty, change larger child, and discover alarmingly similar situation. Deal. Return larger child to wheelchair, respond to text from friend with relief at local Hotel use and apologies for forthcoming lateness. Extract small child from potty at child's request, place on bench, rescue dress from dryer. Watch in disbelief as small child has delayed reaction to earlier suppository, and decide to be thankful it's only a towel and bench, and bath rather than the poor abused dress.

Clean child, whilst older child smirks in irritating "I would never do that" fashion and refrain from reminding her of all the times when she has. Throw small child into the bus, wheel larger child into bus, clamp down and drive off.

Get half way to destination and hear small child "Oh NO Mummy I not got my wheelchair". Do a U-turn in a side road, and head home for the wheelchair. Drive off again. Come back for the birthday present. And then a small child's emergency toy.

And then finally arrive, unload the bus, and wheel two children into the party. Little Fish adamant that this is HER party, despite repeated assurances that it is not, and that her birthday is not yet. She liked the balloons, anyway.
One nice, relaxing evening with friends (K, you were missed and in our thoughts). One small girl not put off by another child's assumption that having a wheelchair means you can't dance, one larger girl who gave a reasonably convincing impression of someone sleeping through an evening. One small girl eating cheese sandwiches and chips, one larger girl who managed three tastes of strawberries before she choked, excellent progress.

And then suddenly tears and trauma and "I not like this party", and bedtime and more than bedtime, and everything went horribly wrong. But not for long; into the bus and a short drive home, out of the bus and into bed, a huggle and a kiss and a quick Thank You God, and one small child with a nice soggy sleeve slipping into a much needed sleep.

One larger girl, having been energised by the strawberries and the atmosphere, demonstrating how unnecessary going to bed might be.
This is a special photograph; for years Mog has been tied to twelve hourly medications to keep her seizures under control. We've been tied to getting back from evenings out by 8.30 at the latest in order that she can have her bedtime dose in good time and not need midazolam. Now Mog did have a biggish seizure earlier on today, and she did have her breakfast meds late too. But it really has been years since we've been able to be out this late at night and not have her even mildly twitchy. Excellent.

And now it's midnight, and Little Fish is processing the day in her sleep, little mutterings escaping her lips as her mind works through the highs and lows. She calls out to me, and I go in to adjust her sleeve and move her Nippy a fraction of an inch, and in her sleep she snuggles up to me and blows half a kiss before nuzzling deeper into her sheet and letting the Nippy take over.

And in a different bedroom, Mog is singing loudly, celebrating the day and dancing to the music which finished an hour or so ago. Not wanting or needing company, just processing her own day her own way.

And I shall finish this and hit send, and head to bed myself.

It's not a bad life.
Tia

Slow Time

We had grand plans for yesterday. Big important plans revolving around the purchase of a dress or dresses, general shopping, a bite to eat; a trip into Oxford with a friend.

And then friend's son was ill, and so we did none of these things. Instead we drank coffee, ate cake pottered around Friend's home town. We failed to find That Dress (although we saw several entertainingly awful ones), we forgot to buy tights, and we spent much of the day just sitting chatting, covering both the mundane and the mainly unthinkable, and generally enjoying being together.

Slow time. No racing around - something which rarely suits Friend's son anyway. Just a potter, a saunter into town, some window shopping, and lots of sitting.

Apply a productivity test and the day was a failure. Time in motion studies would write us off, efficiency drives would have us sacked. And of course there are consequences due to our inactivity - That Dress was not bought. other things will be left undone; we will, as so often before, make do, adapt, and improvise, and just about squeak by as acceptable rather than shining out as stunning.

The studies are wrong. Yesterday was a total and utter success. Setting aside the fact that no time spent eating cake is ever wasted, we did achieve what we set out to do. We met, we spent time together, we had a pleasant day. Friend's son got to enjoy the wind on his face, Friend and I got to walk away from the phonecalls and general life clutter.

A day spent being, not doing.

It is so easy to get caught up in all the oughts and shoulds and needs and musts. I'm truly sorry it took Friend's son being ill for us to swap the busy for the gentle timelessness. But I'm not sorry at all that we didn't make it into Oxford. This was the first day since we started 2 hourly cathing that I have not had my day divided up into evenly spaced slots, with activities and non-activities being shuffled from one to the other. Our original plan would have swallowed this time up and more than filled it with busy-ness. This way I had the pleasure of sitting back and appreciating my time off. Our original plan would have involved lots of pushing Friend's son around in his wheelchair - never a difficult thing to do, but an activity which inevitably means he is faced away from us, watching the world walk past. This way, I got to sit opposite him and watch his beautiful eyes, see his emotions flit across his face, listen to his contributions to our conversations. A much better plan for the day.

Nothing special, nothing spectacular, no huge activity or months of preparation. Just a small space in the week, a gentle happy memory to look back on, a day that would otherwise have been lost.

And now it is another day, and it has been mostly swallowed up in the round of hospital appointments, the search for yet another last minute fancy dress costume, driving and parking and washing and and and and and and so it goes on. And now Friend's son is iller yet, and I suspect Friend will be having a long and busy night as well as a busy day. And Mog has come home coughing, and Little Fish has her own little infections, and the pace of life picks up again. But yesterday we got to pull over onto the hard shoulder for a while, and that was nice.

Tia