summer fun...

ok so the chaotic garden won't make the magazine pages - but it's fun!

birthday for G, bbq, splashing, pool fun, summer walks with Ix...

up in the air....

next door's cat comes eye to eye with large toy dog (won in tombola last year)





all the fun of a kitten without the responsibility! and less risk of setting off Ix's allergy as cat stays outside...



and the girls and friends created a mural on the shed....(spot the yellow submarine!)




we love our garden! didnt have one for 14 years...not gonna give up* having one now...pottering in evening watering the plants..therapeutic, relaxing...


* exP thinks we should move into the flat next door to him which we joint own still as a buy to let...(pending financial matters court hearing) it has NO garden, but that is not important, says he, I am just being selfish...the kids can play in the car park of the flats... duh!!!

a really nice break in Wales

half term, sunshine, farm visits, walks, sea, sandcastles, care for Ix so we could go out places altogether and also split for doing separate activites eg him on tour bus, girls on pier rides... and dinners cooked by mother... could not ask for more

a diagnosis...17q21.31 microdeletion

there is a lot in a small amount of missing DNA/chomosome - apparently - but considering how catastrophic other missing/warped/failed bits of DNA can be, this one is, really, getting off lightly.

Ix will not die young from this, given he is healthy now, he does not have any heart/kidney issues which can be associated. he does not have seizures....

"17q21.31" - bit of a mouthful...hmmm, maybe a new name is needed?

http://17q21.com/en/index.php
lays bare the features... 100% cognitive issues...

but this one is nice -
"Behaviour is typically friendly and pleasant""this is the Ix I know -

sure there are the autistic behaviours - but by and large he likes people - and that is a very valuable trait.

it's been a long road - the first years of desperate searching for answers, then quietly rumbling along in the background...waiting for genetics to catch up...hundreds of appointments...

and yet it is a good time to get the answer. I know what the prognosis is already, his level of need - this gives peace of mind really.

May...

May began in Scotland...

and should contonue with mini-adventures along the way.

April saw highs - family times at Easter, excellent school reports etc...

and some lows involving issues with ix's after school carers and the ex, and ex losing Ix from his own flat - found a few streets away - and he still refusing to fit security chains etc..hey ho. so Ix's visits more limited but girls' visits going ok - apart from he force feeding them eskimo oil which they hate and is rather loose with timekeeping - but hey.

but onwards and upwards...

March saw a birthday...

L turned 10! a good day with her school and Brownies friends, a science lady with a host of gooey and sticky stuff and some bangs and explosions, a large red balloon, food and cake...

busy with work, bit of a rut of work, home, kids, sleep, get up, school run, work etc...

but - had a day trip to give a lecture in Antwerp, Belgium, - dropped girls off, 11.00 am train eurostar, leisure select (large solo seat and food and wine at the table!).
finished reading "girl with the dragon tattoo"...

lecture went well, (well practised presentation) with nice bunch of interested post-grad students ( I can do this sutff! i went last year they specifically invited me back...) ...then an hour of shopping in Antwerp and home - glass of champagne with dinner and reading....home to carer with Ixand girls had gone to stay over with friends.

meanwhile, sunday i dug the bare patch in the lawn and planted gras seed, put in some shrubs - and then went to see "the girl with the dragon tattoo " at the cinema...excellent and as good as the book...now starting the next book in the trilogy...

pottering in garden, reading, cinema - a good day.

siblings and cousins

don't often catch them all in one photo so here they are...

we were visiting baby H and the nearly-three year old cousins came too. busy household.

a good day out with family.

three sisters, one elderly (great) aunt, a 13 year old, a 10 yr old, a 7 yr old; two brothers-in-law, two toddlers, one baby!

and have booked the train to Scotland to visit brother and his two girls May bank holiday.

my son's view of me as a working mum....

Ix chatting yesterday: typing.

"daddy lives in xxx street"

"aunty lives in xxxxx"

"J and I live in oxford"

"mummy lives in work"

spring? when!

spring lambs... colouritgreen.wordpress.com - a long way from today's rainy damp walk thru urban sprawl, and the damp, waterlogged, urban garden...



still, we did come face to face with wildlife last weekend on an escape to Woburn with the girls while Ix had a great time at respite.



lovely to stay in a nice hotel, have nice meal with glass of wine and enjoy the girls' company.

but today a long-overdue visit to friends during which Ix chatted non-stop on his device, impressing all...friends who first met Ix age just two... we've come a long way along the rollercoaster ride and not just Ix' issues...

now waiting for girls to come back from their dad's - but they are there with his friend and her two daughters, who they haven't seen to play with since about October last year (when he became too depressed to make any arrangements with his friends...) ...so forgiven for late night on a Sunday.

this time...

wheels to freedom

colleague at work had bought a new bike so this was free...with a service and a few new bits it wil be fine.

cannot wait to get on it and ride....

the bald look

older, wiser?

a week with heavy cold - or was it swine flu - dropped girls at school Weds then went to bed...helped some...

revived enough by saturday to celebrate my birthday with friends over for lunch - adults chat, eat, drink; and children play, just as it should be.

five years ago i turned 40 - and hosted a similar format but bigger lunch party with friends and children...40 felt good, i had the three children i wanted, a good job, friends....a "husband"(unmarried partner) who was not perfect, far from it, but i thought i could tolerate ("for the sake of the kids"?)and muddle along with....

two years into the "five-year plan" he went on a downward spiral into self-harm, depression, some kind of mental health "episode" - and it all became much clearer just how much i had given of myself..."tolerate" from here now looks like martyrdom...it was too much of a struggle...

it sounds mean - if you see it as me not being around for someone who became "ill" - but there was a lot more to it than that. the issues went back much further than the "crisis" (and in a way that episode "saved" me - and the children...)

learning that an adult is responsible for themselves and their own health issues - especially when those issues impact so dramatically on those around them - and discovering that i had a choice whether to be with him or not - were defining moments.....

anyway, life at 45 is good, as single, separated, parent, having built, i hope, a safe, secure family unit where their contact with their dad can be kept safe and good. and hopefully positive.

and miles and miles away from having to live day-to-day with someone who became more and more controlling, needy, dangerous, etc, etc.... even if i still have to deal with minor irritations over contact, finances etc. more of that another day...

hair..gone....mostly...

a new cut to show off the alopecia...

he isn't bothered...in fact now shares a look with his bus driver!

but has taken himself to bed with a bad cold - and a large dose of calcold....

encounter with the ex....

so EX came to doorstep with papers i needed to sign (still not sorted out financial separation, seeing barrister soon).

some bla bla about money we jointly liable for, needs to be paid end February - well i don't have the money, i am not paying that, . well neither am i... stalemate...

then - "it is so humiliating standing on the door step.."

well, last time you came in my house you smashed up my door with your fist...

"you know i really regret that, it should not have happened and it won't happen again..."

except - he didn't say that.

he said:

"well, I smashed my fist through your door because on that day you said to me that (bla bla bla).."

it isn't important what i had said - nothing can justify a violent reaction.

and nothing justifies continuing to believe in his entitlement to act aggressively 18 months later...

i said I am not going to discuss any more, goodbye.

he put his foot in the door so i could not shut it... "you are so abusive" he said.

I said, goodbye...he left.

today: message to the children:

"why dont you come to the cafe after school to see me. mummy can come too and have hot soup".

some game is being played....

this is the post-depressive phase...and it is scary.

hair today, gone tomorrow...

the up phase of "depression"

Ex appears to be in an "up" phase. calmer...kids have noticed: "i think he is improved" says G.

they saying they happy to go to his place unaccompanied, in fact they have stayed for 40 minutes/an hour with him alone - tho only after carer has taken them to him and satistfied they happy and playing; and has been to pick them up afterwards and bring them home at the appointed time. they have not wanted to stay beyond that time, despite him asking them to do so.

he has cooked dinner for them several times.

he has organized with his friends this weekend to come pick them up (tho has not taken advantage of the full time allocated by court order, so has been 3 hours today when could have been six).

he is "organizing the girls' room" in his flat.

is all good...there is nothing I would like more than to be able to happily send them off to spend time with him.

but...I feel uneasy...

the "ups" have always been followed by "downs" before.

and he is still sending text messages accusing me of being "abusive"(by having left him) and messages insisting that Ix's alopecia must be due to the stress of living in a "broken family".

and messages saying "i want to see my children every day" - which isn't going to happen and doesn't reflect the actual situation...or indeed what the children may want.

and we have not yet sorted out financial matters...

I hear in my head: "tread carefully...for you know not what lies beneath the surface..."

in past years, looking back - he has - often in the early part of a new year - been active, focused, achieving, organized - sometimes has pushed for something specific when I may have dropped it.

Sometimes, to good effect, but sometimes has run away with an idea which has been unfeasible or impractical, or has assumed that other people would automatically fall in with plans for them - without asking them).... but the fall inevitably comes. or the reality of what he has been striving for just cannot happen (eg 2006 - was focused on searching for a property to buy, but ran away with property way above our budget or grandiose plans to rebuild one, when a minor restructuring would have sufficed and been within budget...fortunately, that purchase fell through.)

i need to (continue to) protect myself - and the children.

stick to the rules (eg court order for contact arrangements).
don't relax the boundaries.

and while G is happy - after all, she wants a loving, happy, daddy - L is still wary: "he needs to show he has improved a lot before i can trust him".

wise words from a nearly 10 year old. she has again brought up the promises he has made and the list of things/pets he promised her but which have never materialised.

And I was proud of her yesterday for expressing her view strongly - they were with him and his friend, it was 6 pm, they were to come home; he sent message saying "are you happy for them to stay with me and I will bring them back later?". for me, it would be up to them...the other carer had said he was putting pressure on them to stay the other day....I called his home phone, asked to speak to L. said "do you want to stay a bit longer just with him - and he brings you home - or come home now, with X?". She said clearly: "come home now".

he did respect that.

snow gone

shame, did look nice.

rain yesterday but sunny today. feeling warm...

Ix out for a walk with his student befrienders, took girls to Marine Ices for yummy dollops of ice cream, chocolate sauce, chocolate bits, etc.

In the afternoon the girls went out with their dad, so set off on marathon walk with Ix as he has been obsessing about seeing some friends in Kentish Town - as it happened, they weren't in... but it satisfied his curiosity to knock on their door and he accepted "not at home". seems happier to have at least been to their house even if they not in...the weird way his mind works....

the good thing about London is there is always a quick way back home after an hour's walk - train took five minutes to West Hampstead!

snow - but everyone is on time

3 cm of snow but everyone gets to school and work more or less on time!

marvellous... hoping it does stay for the weekend.

have seen many - ologists...

at one time the list for Ix was long and appointments were many - in the early years at hospital seemingly every month...

neurologist - various different ones, looking for clues, doing MRI etc...
gastroenterologist
opthamologist
audiologist
ENT-ologist
respiratory specialist and allergist (following severe croup episodes from age two to about six or seven)
many different speech, language, physio, occupational therapists

- and above all it was: what is going on? how? why?

appointments were about finding answers...often they didnt.

many were frustrating. gave more quesitons than answers.

some yielded results - eventually - the MRI at age five did show anomalies. but they are not diagnositic in themselves and you cannot directly correlate the thin white matter and thin corpus callosum with his abilities/disabilities.

and finally getting grommets in ears surely helped his hearing. but this could have been done sooner rather than going back every three months and doing nothing...

so ...have boiled it down to paediatrician review once a year.

thought had done with new -ologists.

annual visit to genetics (still awaiting results - but have accepted it is a question of time wiating for science to catch up and come up with the underlying issue)

and regular opthamologist...because we haven't moved onto local optician yet.

but now added a new -ologist - dermatologist.

but like some of the others over time, no answers.



it might get worse before it gets better.

try steroid cream - it might stimulate regrowth.

or it might not.

but somehow having a not-uncommon issue - and one which can affect just about anyone - means it is an "oh well..."



would it be better to just shave it short now?

rather than keep the longish strands covering the patches?

it is this deep...

so not THAT deep - but it had been enough to keep Aunt (82 years young) from leaving her house for a week.

so we all drove up to the garden and pet centre and managed to while away an hour or so - good cafe with table full of kids's books for Ix to look at.

still snow...

not sure what his name is...but he got another layer on top later on.

meaanwhile, the drains are cleared but the tidy up on patio cannot begin and is all frozen anyway. needs a bleach filled jet.
still, all looks lovely and white.

girls' school opened - small classes as many stayed away, but they saw friends and watched DVDs...and apparently did some maths.

Ix school closed he entertained himself with TV/computer while i remotely connected to the office in between taking girls to/from school - very slowly on the side roads.

all schools open tomorrow unless more snow overnight....not forecast but you never know. got dermatologist appt too.

snow and the working parent....

lovely white stuff...

0810 Ix bus arrives, great!

0830 - girls carer texts: is on way tho delayed... great!

0832 - school texts - is closed and driver calls - is bringing him back...

0930 drains man arrives and gets gear on to unblock drain

0945 girls carer arrives - now she will have all 3.

1000 - stand over drains man as he descends into the depths....he reckons it is rubble in the interceptor, plus wet wipes flushed down loo haven't helped...

leave him (back up on dry land) jetting out the drains.

leave kids with carer.

11.00 arrive work
catch up emails etc...

back home 3.30 to allow carer to leave to get back thru the snow...

log back onto work email from home...

text from Ix school: will tell you at 0715 tomorrow what is happening...

girls' school - who knows for tomorrow!

and they say the big freeze will continue into next week.

oh well see what happens tomorrow. no point fretting...plan to get up tomorrow as tho for school and take it from there. luckily kids can spend some time plugged into TV (all)/computer (all)/nintendo (girls) /playing together (girls) so can "work" from home to a degree....

easing back to normal...

goodbye soon to this...



and begin the big tidy up.

but we have the Spanish custom of the "Reyes" (three kings) 6 January to come...wot, more presents?

work opened today, woke with bunged head and sore throat, so when carer called to say she was sick it was easier to stay in pyjamas and stay in...also on pretext of awaiting "Bogdan" to come and unblock the overflowing drain...tho it may be frozen. anyway, he eventually said he coming tomorrow instead.

but it cold out, we ventured out only to jump on the ice on the water-filled sandpit...

so, one child back to school tomorrow, the other two on Thursday.

New Year was spent staying over with friends - several children, we nearly missed the TV countdown



this preceeded by trip to see our friend M in a fab panto at Greenwich Theatre Mother Goose - keeping Ix in his seat and entertained throughout gave it full marks.

So, back to reality.

appointments at coeliac clinic (just a review) for L, and GOSH again for Ix :



not pretty - by all accounts we may leave with little more than steroid cream, but who knows what they might say...and should a bald 13 year old wear a wig?

(NHS online national appointments system, v. impressive, choice of hospitals and clinics, tho ultimately it came down to availability.... plus it came up with a very weird extra appointment that I dont know what is for - and it said "call to find out your time, you cannot cancel this appointment". think i will ignore...)