• English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

O is for Organisation

O is for Organisation

As a student I lurched from week to week never planning forward like how much money I’d need to buy food with or when that deadline for my next essay was due.

Perhaps people would call that ‘living in the moment’ these days and try to achieve that same level of ‘devil may care’ attitude by going on a weekend retreat of yoga and self discovery.

I know that I am a bit of a scatter-brain and I don’t think my dyslexia helps, but there is some method in my madness, some order in the chaos, even if I’m often the only one who can see it!

That all got turned on its head however when my magical daughter was born.

Actually to be precise it started four years before she was born.

For those of you who have ever had to worry about infertility or sub-fertility, you will know all too well about planning and organisation. Mother Nature truly works to a schedule in that department.

Those of you, like me, who have undergone repeated rounds of IVF will probably have a smirk on their face about now.

The planning and organisation involved is on an epic scale. Forget to inject yourself at exactly the right time and it's all for nothing.

Even so, those years were child’s play in comparison to raising a baby with a unique genetic condition and an emerging long list of special needs.

Each week it seemed that we had acquired a new label to get used to.

At least I tried really hard to get her in the first place, because lord knows we have worked hard on several occasions to keep her here since.

I have a large 'week per view' Filofax for my daughter that I have had since she was born, full of all her appointments.

Occasionally it has something more fun like a play date pencilled in, always in pencil!

Each year when I replace the pages with new ones (this starts in August as we start to get appointments for the following January!), I look through the year and see how far we have come.

I’ve seen a definite trail-off of many of the consultant’s appointments now.

Not because everything is fine and sorted, but because it isn’t and somehow I feel after a certain age an unspoken agreement that they can’t change things creeps in.

The Golden window of opportunity slowly closes its curtains on optimism.

Their waning appointments have been replaced with more regular school appointments, which at least are nearer and more fun.

This time, instead of resisting the tide of people, I have embraced it.

I joined the school PTFA as soon as my daughter started there and over the last couple of years I have worked with them to fundraise for a much needed new playground.

We have raised £130,000 in a year and I have fallen into a ‘project manager’ role co-ordinating staff, pupils, contractors and charities.

I even stood up at a posh London charity dinner in front of 200 people and talked about the school and what being a special needs parent feels like to me.

Only then when I saw their reaction did I know how far I have come... An independent, organised parent, shaped by the experiences I once feared. 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sam Bowen

Meet Our Blogger

Hi I’m Sam, Mum to Lucy who is has complex special needs but is the happiest person I’ve ever had the pleasure of meeting! I own Hip-Pose Ltd, a brand of clothing I designed for babies with hip dysplasia (which Lucy had). I’m also a fundraiser for her school PTA and in my spare time (if I get any!) I sew and make crafty stuff.

View Sam’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...