A little more than seven years ago, our family embarked upon a journey. A journey of exploration and discovery; almost a magical mystery tour! We had around nine months to pack and prepare, although it was only three weeks before departure that we received an inkling of where we might be going. And when we found out where we were going, we were advised not to travel at all. But I’m not usually one to take advice…
Our guide on this journey-of-a-lifetime was a little boy. A very special little boy with sun kissed curls, dark eyes and a cheeky smile. He led us in many unexpected directions, often through difficult terrain, always through incredible beauty.
We met many other travellers along the way. With some, we only crossed paths. Others walked alongside us for a short or a very long while, with their own unique and wonderful guides; some like us have come to the end of that journey; many are journeying still. With several, I know we will keep in touch.
We also met the natives of many strange lands: some welcoming, some hostile. Some will remain in our lives long after the journey has faded to a memory. The lands of community paediatrics, genetic testing, physiotherapy, occupational therapy, speech and language therapy, social care, special education, disabled facilities grants, school transport, respite, palliative and end-of-life care.
We learned so much on this journey. More than one new language, for a start: foreign tongues full of medical, legal, and political jargon, and one language that relied not upon words but upon touch, movement, and looking into someone’s eyes.
This journey opened our eyes to our own privilege, to the treatment of minorities in our society, to discrimination, judgement, prejudice and hatred. It showed us where human rights are being trampled on and where our value system is unbelievably far off-track. It taught us that you don’t need steps to be inaccessible; and you don’t need extra funding to be inclusive.
But it also enlightened us to find gifts and talents where we would never have looked before. To new ways of doing things and new ways of seeing. To spot the beauty in sunshine and shadows, in stripy jumpers and jingly bells, in Christmas baubles and rain on a car roof. That you don’t have to be able to ride to enjoy being on a horse, or able to swim to love being in the water.
Our guide taught us to slow down, to stand up for what is right and for those who may not be able to stand up for themselves, to share what is most precious to us, to ask for and accept help, and that camping holidays never go to plan.
On this journey with Benjamin, with my patient, caring husband, and my whirlwind daughters, I learned about heartbreak, fear, strength and persistence. About unconditional love and all-inclusive joy. I learned to make the most of every moment. I learned that sometimes, all you can do is put one foot in front of the other. And I learned to dream.
We learnt most, perhaps, during the last few miles: how to keep going when hope is faint. How to lean on one another. How to say goodbye with no regrets; that it is not wrong to laugh in the midst of grief. How to trust in the soul when you don’t know if you still believe in God, and how to have faith that the stars are out there even when the haar blots everything from sight.
We started our journey as a family of three, and return now as a four, although we are really, and will always be, five. We started in the big city and return to a town that is to us that all-important village.
Our guide is on a different journey now, but we know he is watching his old tour group from afar, and sometimes we may catch glimpses of him in the dappled sunlight, in a child’s balloon, in a flash of orange in the darkness.
The end of any journey is a time of transition and anti-climax. Back where we started with a bump: I don’t have anyone to keep alive anymore. I don’t have a legitimate claim to campaign anymore. I don’t even have a to-do list! No longer constrained by a disabling world, we can go anywhere, do anything, be spontaneous, or lie in bed all day. It feels strange, unreal, like jetlag—except this we can’t sleep off.
But we are not really back where we started, for the journey has changed us through and through. In time we will take what we have learned into our new lives, and they will be richer for it.
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