Sunday, 9 June 2013

Life and its light and the shadows it throws!

Life is good life is wonderful In fact life is amazing.  Sometimes though its just plain Hard! 
The daily grind of house chores, dog walks, school runs appointments are exhausting with out the treble tag team of kids who either all poodle along quite nicely and self sufficiently one minute so I nip to the loo or pick up phone then all hell breaks loose and some one poos then someone falls over then someone else needs an iPod password or help with homework or an opinion on an out fit then some one pokes someone else in the eye then the other one poos then a drink goes over.  I could go on forever but I won't I'll just say this all usually happens before 8 am and or while I'm cooking / burning dinner lol
 I am going to pause for slightly darker thoughts. Most of the time the fact our son has Downs Syndrome doesn't come in to anything and isn't even at the front of my mind it just is what it is and he is just Max. Then there are other times it feels like there is a huge dark cloud of prejudice and ignorance casting its shadow over us, lucky for us it has yet to give way and rain it's nastiness on us directly but we can hear the storm nearby often.  There are certain words I will not give power to here that are thrown around casually but actually make me sick in my mouth and when individuals with downs syndrome are referred to as a "they"  or " A Downs" even when it's in a well meaning context is difficult to stomach.  
Then there are things like a new test that allows for a more definitive early anti-natal diagnosis of Downs Syndrome and the fear this is being reported on as a good thing because it is assumed that instead of being informational tool ( which is always positive) it is a way of parents knowing and "dealing" with the pregnancy whilst still early and cough cough easier !!! 
Don't get me wrong I have talked before about how I am still pro choice and not against termination for any reason, it is always a very personal and difficult choice what ever the reason be it medical or circumstantial.  But statistics are that the conception rate for pregnancies where there is a positive result for Down's syndrome is higher then ever before yet the number of live births have stayed the same. Explained probably by the 96% of anti natal diagnosis that are terminated !  I know that will always be a high percentage yet I truly believe that many families would make a different decision if there were more positive media stories and general information in day to day social life there fore not quite so scary.  I have spoken with more then a few families who bravely admit had they known during pregnancy they likely would not have continued on to have the child they adore and would now not be with out or change in the slightest, because they just didn't know what Downs Syndrome actually was or what it means beyond the stereotypes.  It frightens me because I can't honestly say what we would have done.

It's not easy raising a child with special needs and we are very lucky in that we have not had many of the very frightening medical worries that lots face, and some may feel they cant or don't want to cope, but nor is it easy raising a smart mouthed pre teen or tantrum throwing chattering toddler either ! All three of my children present their own challenges.  Who are we to say what we can deal with or what fate is going to give us with any of our children. 
I sometimes feel that although everyone who knows/meets my son loves and expresses pride and awe in his achievements they wouldn't have wanted him if he had been their own !  I can't help but be saddened by this sometimes. Only sometimes ;-) 
These Worries about how cruel the world is were swiftly laid aside with an opportune meeting at the park with some children from Molly's year at school, not particular friends but boys that I have always been aware of and on friendly hello terms in the playground with their mums.  How Boys just being boys but at the same time so caring and unobtrusively and naturally inclusive! I don't know how I didn't sob on the spot, they just with out mothering him took care of him and made sure ( although obviously slower and clumsier then they ) he got a chance to kick the ball with out having been asked or it feeling like they were paying special attention !  

To say I felt reassured would be an understatement especially as we are preparing him for that giant leap away from us and towards independence with School. 
This alongside really positive attitudes from his school to be and watching how confidently he storms around an explores his new environment when visiting the playground all in preparation for the big day in September and how he already just seems to fit and is just one of many not standing out or isolated :-D Makes my heart sing. 

Then there is number three. Cuteness personified in a Sunday morning serenade or simply in the way she says "turtle" 
Painful reminders of how my littlest baby is a baby no more like taking the sides off the cot and her taking to a big girls bed with out a blink or refusing a lidded cup and insisting on drinking from a " cupa tea cup "
Turning 2 years old and telling everyone about her "appybirfdie shlide" 
The following week successfully saying goodbye to nappies and making the change to big girl pants.
Number one growing up, changing  ( not always pleasantly ) taking an age to decide what to wear of a weekend and having very strong opinions of what she doesn't want to wear ( usually whatever I suggest )
Missing her horribly as she spends the longest ever ( for me I think they flew for her ) three days away with school thriving on the independence  and rising to whatever challenges thrown her way, zip wires, camp fires assault courses and abseiling to name a few. 
Pride in her growth and achievement conflicting with terror that she is on the cusp of leaving little girldom and hitting those years where she becomes a teenager and too quickly young woman.  Time is running away from me and with it, it's taking my baby :-(
Finding the time to schoooz myself up a bit, even if it has to be done in stages. 
Cocktails and laughter every now and again.  Evenings devoted to special people. 

Making the most of any hint of almost good weather, enjoying family time and getting some exercise too.
Taking advantage of lighter evenings to walk the dogs Solo and finding it so much less of a chore with out a double buggy / two headed park demanding monster and its big sister the whatwhywhencantIletsjust Ghoul! 
All in all life is wonderful even when it is hard work xxxxxx 

Wednesday, 10 April 2013

Holidays and Haircuts

Too much has happened this last ... oh my goodness its been nearly a year! For me to catch up would be impossible.  I can't really say why it's been so long other then life is busy, good busy but still exhausting and once every one is in bed and the chance of an un-interfered stint on the laptop occurs I have found energy and motivation impossible to cultivate!
I'll just have to start and forgive myself if I leave anything significant out.
Holidays and haircuts with charity Christmas and goodness only knows what  else in between !
Where Mums and Dads get to enjoy their children and each other and dare I say Relax 

And part kids part fish it seems get to have pure un-adulterated fun. 

 Big girls get dreams answered.
 And take a huge step with a much more practical grown up new do.

 Appointments When you didn't realise you've been holding your breath until the doctor releases the iron band around your chest with one sentence ' the hole has closed and his heart is fine, 
Children ever changing, growing up which at the same time as filling you with pride it brings a little sadness, you never get time back.
Oh and another furry  member joined our mad household bringing with him noise, training challenges but ultimately a whole bucket load of love ! Put it this way his name was quickly  
and unusually added onto  Max's short list of spoken words and is clearer then most. 
Introducing Twig (pre-named I hasten to add but already having a Woody in the house we felt it fitted too well to change) 

Another Christmas filled with family and love.
Giving a little of my self and my time to help organise what to some is a little social comfort but potentially to others could be a lifeline of support is proving to be a hugely  rewarding and exciting  experience.  I have to admit that I feel a little guilty that it has taken me to be directly effected by something to make that effort, how selfish! 
I can only say that life changes you and my life has opened my eyes to the world in so many ways. There is such a lot wrong and so much to be done to put that wrong right, too much for me but all I can do is pick something that I know and do what I can and accept that it has to be enough, for now. 
I have this past year become  more involved in the Down Syndrome community and active on various forums which has bought wonderful support and benefit, sharing with other parents who have been or are going through similar experiences is proving invaluable. The challenge however is to not take on all the woes worries injustice and ignorance that each individual family encounters personally.  Obviously I don't mean I won't or don't want to support others but we have to each fight the prejudices we may face in our own lives in our own way.  Taking on  every parents every battle is the fast road to being angry ALOT.  Sometimes it's ok to let an unfortunate choice of language or phrasing go when it comes from a person who is well meaning and would be mortified to cause offence. 
Of course there are certain  words or terms which I don't need to give power to by listing here that I will never accept and will always loudly and forcefully object to, and if ever there is deliberate offence intended or nastiness behind a comment this She Tiger's claws are ready to defend her cubs!  
However I can not get agitated at every innocent misconception from a well meaning stranger or even loved one just because Jane Doe in Aberdeen suffered from a horrible person using that misconception in a rude and ignorant way or assume that the usher in the cinema I'm at is going to be as ignorant rude and discriminatory as the one in that cinema another poor mum had the unfortunate displeasure to attend.
Some Rhino skin is needed and battles to be strategically picked! 
I will continue to give and take advice and support from these amazing families but I am for the sake of my own sanity learning to as Simon puts it 'let some of it go'

Having said that I feel the need to state :
My son has Down Syndrome, he is not 'a down Syndrome' 
It is something he has not who he is!
 Max looks more like his Daddy, his sisters even cousins then he does his friends who also happen to have an extra chromosome! Just saying ! 
There is possibly another reason for the length of my blogging absence. I find writing cathartic, I put what is playing on my mind into words maybe  even good English sometimes and it helps me sort things out. 

Something awful happened, not to me directly but I felt and still do feel deeply affected by it. To say that it has been predominantly what was / is on my mind is an understatement!  It is not mine to write about however and for a while I couldn't see past it to write about anything else.

The price of having too many people who mean such a lot is that you are more likely, more often to care deeply for some one who is suffering, be it from loss, ill health or stress and if you are an empathetic person in any way you can't help but take on board  some of that suffering yourself and be affected.   Still the benefits of having those friends and the richness with which they fill your life far out weighs any emotional strain, as they doubtlessly strengthen you in times of your own need and the emotional mirror that you are gets to reflect all their joys and triumphs too. 

I say this to every one of my friends I look forward to shining back your joys to you but I will always willingly and honestly grateful for your part in my life,  be here for the sorrows too. Xxxx