Disability is Not an Inability
Nine years ago, three months following the birth of my first child my world came tumbling down around me when my beautiful baby boy was diagnosed with Leber’s Congenital Amaurosis a genetic eye condition that meant that he was and would always be severely visually impaired, I remember worrying about EVERYTHING. How would he play? Would he make friends? How would he learn? All the ideas I had about raising a child changed. What I had been told to expect when I was expecting, was not what I was expecting, at all!
When the dust had settled and my love conquered my fears I knew that one thing I would never do was to wrap him in cotton wool or to limit his access to the world and all it has to offer. I knew instinctively that in order for him to have a good and fulfilled life I needed to focus on the things that he could do rather than the things that he can’t, which as it turns out there are very few of!
We were living in South Africa when ‘Pumpkin’ was born and the first time I took him on a plane was when he was just two months old when we flew from Johannesburg to Durban. At the time I was battling through intense and choppy ‘breast feeding’ waters (a whole other story!) and as the airport tannoy screamed my name I was sitting in a toilet cubicle cradling a hungry baby desperately trying to feed from my malfunctioning breast. As I stepped on the silent and crowded plane seconds before it was due to leave, with 150 sets of eyes on me and my screaming newborn I was ushered to my seat where I squeezed myself between two rather large business men. Frantically I scrambled through my bag for a clean nipple shield, the only tool I had found helpful during my stubborn and extremely painful desire to feed my baby naturally, as my mother had done for me with ridiculous ease. I spent the 90 minute flight half topless and on the verge of tears.
Anyway, it didn’t put me off and since then Pumpkin has become a pro traveller. Of course there are difficult moments travelling the world alongside my visually impaired child who also went on to be diagnosed with ataxia and most recently, autism. To this day I am sometimes hit with a familiar stomach punch that reminds me that he can’t see a spectacular view or a pretty piece of art high up on a wall, but these moments are topped by his squealing happiness when the airplane touches down on the runway or when a high speed train whizzes past blowing a rush of wind in his face.
There are of course days when I find it hard enough to just get him out of the door in the morning for school and like any other parent I have experienced completely horrendously timed nappy leaks, motorway “I need a wee’s” having only just left the services and screaming meltdowns because he’s ‘hangry’ or “not tired”… However, we have also had many beautiful moments and made hundreds of memories from the sunshine and salty seas on holiday on the Italian island of Elba, the -18C snowy streets of Boston, Massachusetts, Christmas carols in New York City, long days of music and dancing at Camp Bestival in Dorset and an unforgettable journey on a rattling sleeper trains from Washington DC to Florida. My favourite Dr Seuss book is ‘Oh the Places You Will Go’ and I often use it to remind Pumpkin that:
“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose”
Hannah @ Planes, Trains and Meltdowns