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