"I don't care what sex it is, as long as it's happy"

so true. V in her blog post has said it all I have also been known to leave people aghast by saying "and what will you do if it isnt healthy? give it back? give it up for adoption?" but in reality this could be what you have to face.... choices. Ix. is happy. he can have a good life. on his terms. and why not?

how time flies

gosh.
time
goes by
kids grow...

five years ago was in an increasingly desperate situation with three small children in small flat living with someone who was self harming, anxious, depressed...building to a creschendo of a massive breakdown...

he moved away but returned to visit at xmas 2007 then refused to leave, life became hell again...

four years ago mid- April just after that year's London marathon - moved with children to safety of a rented flat.

the flat is a haven, with beautiful garden, we have had so many lovely gatherings, barbecues, trampolining, or just pottering....tho sadly not suitable size-wise so still need to sell joint-owned flat where ex is living and put equity towards something. (ex says ""wont sell despite a court order so we shall see...).

not easy reaching a point of stability and learning where to set the boundaries (definitely at the front door), something of a long and arduous journey.

today:
living with a teenage, largely happy bald- headed young person who types more and more stuff on his ipad, loves school and meeting people and is happy spending longer stints at respite. challenging and demanding at times.

leaving more time for me to spend with girls, now 12 (tween/pre-teen moods but still lovely) and nearly 10 (emotional but happy).

working. daily. cut hours to 80 per cent but spread over five days so daily grind of car to school - car to work -work -car to school to pick up from after school - home- evening chores... fab team of carers for son, holiday care for girls throws up costly solutions and tricky in long summer hols..

after many ups and downs and traumas girls see dad a few times per month usually in public places and not on their own - unsupervised contact had to be cut in late 2010 when his depression/anxiety levels were very high and manifested in scary behaviours.....son just wants to see dad (emotional/cognitive level is different to girls) so sometimes goes for dinner.

GP meeting this week (a first!) for some disclosure - "stable" "not low mood". tho the "18 months stable" didn't add up as in June last year eight months ago much trauma and anguish and more scary behavior during court hearing to get a court order to sell joint property (which not yet completed for various ongoing reasons)

however, pushing thru the financial matters (ie flat sale) may well prove a trigger for high levels of anxiety and potential problems...but we shall see.

for now anyway... a certain stability with time to ponder.

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...