helping one boy be the best he can be
On 25 February 1998 we welcomed our first son, Oscar James Palmer Berry, into the world. He was five weeks early and had arrived after 14 weeks of working hard (ie doing very little) to keep him on the inside. I was a mere spring chicken at 24 and everyone was most reassuring it would be ‘highly unusual’ there was anything wrong. But as the pregnancy limped along from one issue to the next I did point out that ‘someone has to be the statistic’.
It turned out that Oscar had a rare genetic disorder – a partial duplication on Chromosome 4 (for the curious it is from q28.1-35.6). The photo above was taken when he was 8 days old and about to undergo his first surgery, this one to determine why they could not get a tube down his nose. (Bi-lateral choanal atresia – blockage of both nasal passages, in his case blessedly by membrane not bone)
At the time there was a case study on a family in Victoria where there was hereditary chrom 4 disorder but that was all we could find in Australia. Through Unique (and on Facebook) we found other families in the world with partial duplications on chromosome 4 but they were few and far between and every single case – as you would expect with rare disorders – was vastly different.
What we did know was what the geneticists told us – that the repetition was large and that the larger the repetition the more significant the impact. Noone could or would reassure us about anything – whether he would walk, talk, be able to eat, go to the toilet, have any form of independence – you name it, it was a monumental shoulder shrug.
Two voices were louder and clearer than all the others though. The neonatalist Martin Kluckow who drew the really short straw in being the one to tell us. As my voice cracked and tears began to well I murmured, ‘but he’s perfect,’ to which Martin replied, ‘of course he is, he is your son and you will love him regardless of whatever label is pinned on him.
The other voice was of the nursing educator of the unit who told us in no uncertain terms that this discovery only meant as much as we allowed it to. Indeed, she said ruefully, if everyone had their genome tested there would be quite a few surprises. She went on to tell us to raise him and treat him just as we would of had he been born at term with none of the melodrama. That to rise to the challenges when they presented and to simply love him.
Heroes I tell you. Both of them, heroes.
So fast forward through years of therapies – speech, physio, OT, a few snake-oil rememedies – the homeopathics, the music therapies, many many nights (and days) trawling through the ever-growing ever-more accessible internet looking for research, therapy, anything to help minimise the impact of this wretched dodgy chromosome.
There were a few lightbulb moments – learning when enough therapy was enough already and to just let the kid play; realising I was only showing the poor boy love when he said a new sound or word or achieved something rather than all.the.time; when to get my snark on and when to shut-the-fuck-up and stop taking everything as a reflection on my parenting when people we offering their experience.
As time passed it became apparent that cerebral palsy was also on the cards. An MRI when Oscar was 7 was confirmation of this.
There is no way to put it delicately but having a child with special needs is suckful. You have what a friend termed living grief – when you get on with life but always have a small part grieving for who this child, this person would have been without whatever albatross is is they carry.
BUT! Life does go on. Your resilience grows. Your acceptance matures. I have to say the worry grows exponentially but somehow, with good people around you that’s OK.
And here we are, on the cusp of a brand new era. High School is calling. Becoming a teenager is imminent. Life. It goes on.
Oscar was accepted into a wonderful special needs high school called St Edmund’s. There will be 20 students in his Year 7, two classes of 10 with a teacher and full-time aide on each class. They have swimming lessons every week as well as additional sporting opportunities every Friday. The school has a fully equipped gym and indoor pool having recently undergone extensive building projects. There is a remarkable music program including African drumming, which on seeing at the Open Day was enough for me to realise this was one special place. There is an awesome tech room and home-ec room and they start the process of gearing these kids up for life after school from Year 7.
At the Open Day the principal Kathy Freeman said, ‘at the end of the day we’re educating teenagers. Teenagers need to be kept busy, to be challenged and engaged and to feel good about themselves. Everything we do here is about meeting those needs.’
The school keeps fees to a minimum to not discriminate against families who are not as well-off as others. They have some major fundraising efforts throughout the year to make up the shortfall between fees and government allowances. It costs in excess of $18,000 to educate each child at St Edmund’s each year.
That said, there is no way we can manage Oscar’s school fees on our own. So here we are. Hat in hand. Asking you, if you would like to be a part of Team Oscar and help one boy be the best he can be.