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