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!