Team Oscar

Team Oscar
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.





Onward!


  • http://trashaloucan.blogspot.com trash

    Team Oscar! One boy and the innernets. A force to be reckoned with.

  • Danielle

    I really loved your story! And enjoyed reading your blog. Below is a special invite for you and your family:
    You and your family are invited to an egg-cellent, egg-stravagant fun-filled family day out at Hunter Valley Gardens for an exclusive sneak peak at their upcoming Easter activities.
    You and your kids will be the first in the country to experience the fantastic array of Easter festivities at the Gardens including a giant Easter Egg Hunt, jumping castle, train rides around the Gardens as well as a performance from the Hunter Valley Glee Club! And of course to keep everyone happy our resident Executive Chef, Nick Vivien will prepare a special ‘Storybook Garden’ themed morning tea and lunch menu for the whole family to feast on!
    Come along and experience Australia’s largest display gardens. There are 10 internationally themed gardens to explore including the kids’ favourite, the magical Storybook Garden.
    Date: Sunday 3rd April 2011
    Time: Coach pick up at QVB in Sydney CBD at 8.30am, Hornsby Railway station at 9.15am at F3 Freeway Caltex Ourimbah (northbound) at 10.00am
    Coach returns to Sydney at 2.30pm dropping off at F3 Caltex Ourimbah (southbound), Hornsby railway Station and QVB in Sydney CBD
    Please RSVP to Ailish Smith, Agent99 Public Relations at Ailish@agent99pr.com or call 02 9779 0999 /0420 723 421 by Friday 11th March.

  • http://edenriley.blogspot.com/ edenland

    I love him, Kim. I love all of them.

    You done good, sweetheart. xox
    edenland recently posted..Minor Things

    • http://www.allconsuming.com.au allconsuming

      Oh bloss, thank you.

  • http://planningwithkids.com/ PlanningQueen

    As a relative new comer to your blog Kim, I didn’t know all the story. Thanks for sharing – hope Team Oscar raises loads of cash. xx
    PlanningQueen recently posted..Kids Activities Melbourne – May 2011

    • http://www.allconsuming.com.au allconsuming

      My pleasure – and I’ve already been blown away with people’s generosity.

  • Paige

    Today I woke yo crabky with the world and feeling sorry for myself. Then I read you blog (to which I am a very newcomer) and was reminded that my daughter born 4 1/2weeks early when I was 21 and my twins born 11 weeks early when I was 27 are perfectly healthy and I should stop the whinging and suck it up!!

    Thanks for your story. I’m about to message you on Facebook about a donation. xxx

  • Pingback: Team Oscar Raffle One Flew Over quilt allconsuming

  • http://www.thatspaceinbetween.com sarah

    You are a beautiful, raw and honest writer and I loved reading this. As twee as it sounds Ive always thought labels are for jars not people and the section where you talked about meeting people who gave you permission to love and nurture your son as just that, your son, reminds me of how much we can influence people by our words. Living grief is concept people find hard to get their head around, I work with people living with ambiguous loss which in itself is similar as it pushes people to cope with the unknown. I just stumbled across your blog after answering one of your tweets…thanks for sharing your story about Oscar – I love his school pic x
    sarah recently posted..Harnessing the memory machine.

    • http://www.allconsuming.com.au allconsuming

      Thank you. Thank you for such a lovely comment. xK

  • Annette Davis

    Hey Kim

    Just saw you on Media Watch & had to come over here & say hello. I can’t believe how big Oscar is now. The time has flown by so quickly. He looks like AB. I hope that you & all your boys are well.

    Take care

    Annette

    • http://www.allconsuming.com.au allconsuming

      Lovely lady! I’ll email you now!

  • loan17

    Recently I was really, really low on money and debts were eating me from all sides! That was UNTIL I decided to make money.. on the internet. I went to surveymoneymaker dot net, and started filling in surveys for cash, and surely I’ve been far more able to pay my bills! I’m so glad, I did this!!! With all the financial stress these years, I really hope all of you will give it a chance. – 3xjn

  • tandyaabnormala

    Recently I was really, really low on money and debts were eating me from all sides! That was UNTIL I decided to make money.. on the internet. I went to surveymoneymaker dot net, and started filling in surveys for cash, and surely I’ve been far more able to pay my bills! I’m so glad, I did this!!! With all the financial stress these years, I really hope all of you will give it a chance. – 3xjn