"I know a man
whose back to front,
The strangest man
I've seen.
He can't tell you
where he's going,
But he knows where
he's been."
SPIKE MILLIGAN
Spike Milligan has always been one of my favourite authors (I
knew most of 'Unspun Socks from a Chickens Laundry' off by heart at the age of
9) and because I can be a sentimental old fool a treasury of Milligan's books
has been sat on the dudes bookshelf for years, completely untouched just quietly waiting. Last week he found it and I smiled
as he howled with laughter at the 'Ning Nang Nong' before stumbling across this
poem which also happens to be one of my favourites.
Reading it back now it feels odd that something that had been
such a big part of my childhood now seemed to hold new meaning, not only that
the enjoyment of these words has passed on to the smallest one but also that this
verse seemed to sum up my first years of Motherhood to a tee.
For the first 4 years of his life the dude was undiagnosed,
we never really knew where we were going - it felt we could just look at where
we had come from. There was no plan, no
route, no path... just a reminded that
if you look back 2 months ago he could not hold a spoon, so that's progress!
I try not to think too much about my first few years of
wearing my mum hat. To this day I talk
about it light heartedly to both
professionals and friends with a 'can't change it shit happens' attitude which
we all know is BS. The truth is they
were hardest, loneliest years of my life, just trying to find where you fitted whilst
loving and fearing in equal measures. Now
we have a diagnosis, admittedly rare in the disease lotto draw, but we have a
path to follow and I take every opportunity now not to look backwards - I do not want to remember or see or feel how
it was.
I do not want to remember the joy of holding him those first
6 months before people were concerned. I
do not want to remember how it felt to hold my every hope and dream still unaltered
because then in turn I reflect on what I feel I have lost.
I do not want to remember how hard peer birthday parties
were. I do not want to think about how I
wished for excuses to bail out so I did not have to listen about how well other
babies were doing whilst seeing so clearly my sons delays. I do not wish to
feel my heart break over and over again.
I do not want to remember how friends went to music groups
and gymnastics and swimming whilst we attended support groups - trying to find
our way, naive and hopeful we could fix everything with enough time and
practise.
I do not want to remember the tears and screams and kicks
and flails when we had to do physio, or how the ever growing list of specialists
were simply now part of our everyday as was medical vocabulary.
I do not want to recall the 6 months it took us to convince
him a walker was a good thing and how hard I found it to cope with such a
physical sign something was not right.
I do not wish to remember the struggle to get DLA, statements
and blue badge applications which were hindered by a lack of diagnosis. Page after page after page of
writing what was 'wrong' with the dude with no room to say that he liked Peppa Pig and
sausages and giggled like a pirate, that despite everything he was a happy little boy. I
don't want to remember the emotional struggle that being so negative was in
fact a positive for him long term. I
don't want to remember the tears that rolled and the wine that was drunk.
I don't want to remember the 3 times we were misdiagnosed, or
the feeling of relief when we finally had an idea of what was causing his
delays (even when this appeared to be incorrect) I don't want to remember how allowing yourself to feel such relief was followed quickly by guilt that you somehow felt stronger, realising
that underneath it all you want or need there to be something definitively wrong with your child.
I don't want to remember the anger and hurt and rage, the
loss and bitterness that we so did not deserve this. The fear, the brave face, the uncertainty that
being undiagnosed had bought us, the
memories of being in that big London hospital which seemed so magical and
wonderful for 'special' children when it was on the TV. I did not belong there and my son definitely
did not... yet we did.
The only bit of looking back I want to remember is the
moment when we were finally turned around and we were allowed to look forwards;
the moment when we had a diagnosis. Yes
Joubert Syndrome is very rare but it is still a path - we could finally look
forwards.
Of course I wobble and stumble and it is not all rainbows, sunshine
and glittery unicorn farts it is still hard bloody work as the needs of the
child do not change with a diagnosis, but I am relieved that I don't have to
look backwards anymore because there is simply no reason to. I can "la la la" my way through
things and keep on walking putting as much distance between now and then as
possible.
Yesterday I was lucky enough to see a preview of the schools
entry into Rock Challenge (a competition where school create a short drama/dance
piece and compete with other schools locally in a proper theatre) I had seen odds and ends of it as
I waited to collect him from rehearsals on those cold dark winter nights, but I
had not seen the finished performance. All
the way through this Rock Challenge process I had shrugged it off as just
another school thing he was taking part in, another annoyance of him being
tired and grumpy and the obligatory Mum grumble
about the extra treks to and from school, but yesterday once the music blared
out and the kids started dancing I was emotionally overwhelmed. In that moment when I was busy looking
forwards seeing him lost in his performance, I found myself willingly wanting
to look back. I was in awe reflecting on
where we had been, on how hard so many have worked to get to this precise
moment whilst wondering how the hell did he pull this off? To dance on the beat, remember moves, follow
instructions, be part of a team, to be fully involved with representing the
school - if I had been able to look forwards all those years ago I would never of seen this on the horizon... but here we are. The boy who didn't, couldn't, wouldn't and
shouldn't is. And not only that he is
doing it beaming with pride and joy
*insert using coat sleeve to wipe eyes* I stood there blurry eyed allowing the past to roll in if only for a brief moment
and I felt better for it... it felt right to remember.
Today I don't necessarily feel lighter for looking back. My heart
seems a little heavier and my head is a tad fuzzy still filled with bitter
sweet memories that I need to distance once more, yet somehow that brief look into the rear view mirror has
made today, the actual real show day, shine even brighter. I know that tonight I will be sat in the
theatre beaming, with my insides ablaze with pride because that dude there,
that one, the one whose eyes are filled with magic and wonder, the one who
would rather be nowhere else on earth, the boy who is... I am HIS mum. And that feels fucking fantastic!
