Top 10 Advantages to being the parent of a child with a Disability
1) Disabled Bays No more aimlessly driving around a crowded car-park with only the precious blue bays left vacant and out of bounds. You get the privilege of parking in Disabled bays and on double yellow lines.
2) Jumping the Queue Whether it’s boarding a flight, ferry or euro-tunnel you get preferential treatment, and nothing matches jumping the queues at a theme park.
3) Carer gets in Free I pay for my child and then I get in free, whether it's the cinema, zoo, theatre, swimming pool or many more. Caution: If you want to go and see the latest Saw movie, it might not work; if you're a Disney/Pixar fan then you're set.
4) Celebrity Status No more blending into the crowd; people watch you wherever you go. Admittedly it isn't the Wow, look who’s over there stare; it's more an awkward Awww look at that bedraggled women and terribly disabled child look. Attention is attention though, let’s not be fussy.
5) Endless Appointments Your importance cranks up to fever pitch. Everyone wants a piece of you as you go to endless therapy appointments. You even get the pleasure of having perfect strangers trample through your home checking you out; it's a lot like Big Brother but without the sleep.
6) Extraordinary Parenting Other Mums boast about their exceptional ability to multi-task as cleaner, cook, accountant, teacher, chauffeur etc., but that isn't a patch on the skills you will develop:
√¢‚Ç¨¬¢ Nurse – not just the magic kiss and apply a plaster type but the real McCoy who draws up dozens of medications daily, learns about PEGs, seizures, resuscitation and other hard-core stuff
√¢‚Ç¨¬¢ Occupational Therapist √¢‚Ç¨‚Äú making and adapting things, always seeing opportunities for development
√¢‚Ç¨¬¢ Physiotherapist √¢‚Ç¨‚Äú daily stretches, 24 hour positioning, handling and active therapy
√¢‚Ç¨¬¢ Speech and Language Therapist √¢‚Ç¨‚Äú interpreting noises and movements, creating a conversation practically on your own, learning about high-tech talking aids
√¢‚Ç¨¬¢ Wheelchair Technician √¢‚Ç¨‚Äú making adjustments and adaptions
√¢‚Ç¨¬¢ Visual Impairment Specialist √¢‚Ç¨‚Äú stimulating sight and promoting all the senses
√¢‚Ç¨¬¢ Dietician – not the petty “Eat your greens” or “Have you had enough to drink?” but more the calculating calories, introducing essential nutrients and multi-vitamins, tailoring feed rates and dose in relation to reflux, weight gain and tolerance
√¢‚Ç¨¬¢ Weight lifter √¢‚Ç¨‚Äú as your child grows in weight, but not ability, you learn to lift a 28kg child with the ease of any burly man at your local gym
The list goes on√¢‚Ç¨¬¶√¢‚Ç¨¬¶..
7) Every Detail Counts You notice everything: every grimace, facial expression or hand gesture. Each movement speaks a thousand words and you learn to notice, treasure and interpret them all. You then appreciate the other children around you in a deeper, more profound way. How they grow, develop and learn so effortlessly, as though Spock has hit hyper-drive.
8) Learning to Live in the Moment Every day and every moment is precious. You learn
that life changes in a heartbeat, so you make choices based on what you believe is important: the people, the relationships and the memories. It's less about yesterday or tomorrow but rather all about today.
9) Love beyond imagination When life pulls you into a thousand pieces, beyond what you thought was your natural limit, you realise you are held together by the thinnest of strands. On inspection you notice that this minute, delicate thread is woven by the most potent and powerful emotion imaginable, love; wordless and endless love.
10) Transformation is inevitable Immeasurably and forever, you, your views, your family and your life are changed. You see beauty where you once saw pain, you see joy through your tears and life becomes a gift, never to be taken for granted.
A Road Less Travelled
It’s amazing to think that 2004 was 10 years ago.
In that year Tony Blair was Prime minister, the Olympics were held in Athens and the actor Christopher Reeve died. It was also the year that I set off with my husband for a slightly delayed ‘gap year’. First travelling to Uganda, to work as a doctor and nurse (sticking with the stereotypes) in a small clinic in the capital Kampala.
Then, we next worked in Gisborne General for a couple of months, before travelling around New Zealand. As we loaded our backpacks for the journey home we heard news of the devastating Indian Ocean earthquake that rocked Indonesia and the world. The ensuing Tsunami was of incomprehensible magnitude, killing over a quarter of a million people.
On the final leg of our trip we experienced some of the sights, smells and tastes of Australia and Thailand. When we alighted the plane in London, we were greeted by UK officials checking that no one on board had been in Thailand on Boxing Day. It was a stark reminder that while we were exploring and enjoying life, for many the world had changed immeasurably and forever.
Within a year our own lives experienced a tectonic shift with catastrophic consequences. On 12th October 2005 our son was born limp and not breathing, leaving him with severe brain damage (Cerebral Palsy).
My heart broke, my emotions raged, my God seemed silent and my world began shrinking.
Eight years later I continue to feel as though I live in the aftermath of that day, with his growing body showing the life long consequences of being starved of oxygen.
My life is unrecognisable from the dreams I once had, with the challenges of each day greater than I ever imagined.
At times I feel I am held in the shadow lands of another world unknown to many; with my precious, beautiful, little boy and the relentless, persistent burden of loving and caring for him.
I am on a journey and road most people are sheltered from and oblivious to. It is as though I now travel through life carrying a permanent backpack.
Some people don't notice my burden, while others look the other way by saying,
He's such a happy boy; isn't he lovely?
Then there are friends who think they know exactly what my rucksack contains and what it is like to carry it.
But they are mistaken.
This backpack is unique to me and mothers like me.
The weight of this backpack I carry changes.
When I go to the park it is loaded down with the disappointment of not getting to enjoy the slide; when at the beach it's sadness at missing out on the ice cream.
When holding my son I'm weighed down with the grief of knowing he cannot see my face or hold me in return.
My backpack contains the pain of my own missed dreams and never hearing my son say ‘Mum’.
During days with nieces and nephews it digs into my shoulders and throbs with the ache of fantasies about what could have been.
On days out I’m crippled by places that are inaccessible and facilities that are inadequate. Every day my rucksack is plagued with sleep deprivation, the heavy labour of lifting and doing everything and anything my son requires.
With time and training I carry my backpack a little more easily. I regularly examine its contents and make sure there isn’t anything in there I can't remove. Yet there are days it is heavy and cumbersome, making life feel broken and shackled.
But I have hope; hope from the beauty of a mosaic, created out of shattered tiles.
I hope that as I piece together the shattered elements of my life and dreams they can be fashioned into something more elegant and beautiful than their broken parts.
Tears In Heaven (A Parable)
There was once a father who loved his son.
When the son was eight years old he contracted an infection that developed into meningitis. As a result the son suffered brain damage that affected his lower limbs and speech. From that day on his father cared for him.
Because the father dearly loved his son, he nursed him with compassion and tenderness.
Daily he woke and in the quiet darkness of the house, got himself ready for the day. Every morning, before the day began, the father knelt by his bed and prayed for his son to be healed. His heart longed for his son to enjoy life as he had done before he became sick.
Then, each day, he helped his son get up and dressed. As time passed the father devoted himself to doing all he could to provide his son with the many opportunities afforded to other children his age.
Months became years yet the passion in the father’s voice didn’t fade, as he fervently called on God to heal his beloved son.
There were days when the burden of care was difficult and overwhelming, but the father was determined not to show his son the strain he felt. He continued to dedicate himself to caring, the smile on his face never portraying the heaviness in his heart.
The season changed and the son’s peers grew from boys to men. They rose up to look the father in the eyes, as they talked of their futures and careers.
The father continued to diligently pray every morning and each day looked down at his son, contained within a wheelchair, dependent on care, limited by stairs and hampered by prejudice.
He fought for the rights of his son to live independently, work and enjoy living; and yet, in faith, each morning he prayed.
One day the father rose to pray, when the phone rang and informed him that his son had died. Within a week he was standing by his dear son’s grave.
Rain soaked his hair and trickled down his face, mingling with his free flowing tears. The brave smile was gone and the raw pain of the last twenty years was savagely exposed.
Amidst the pain and grief the father was comforted by the belief that finally his son was whole. He had so longed to see his son healed, and in his absence he finally was.
He imagined his son running and smiling, enjoying the beauty and eternity of heaven.
For years the father visited his son’s grave until one day he too was called home and found himself opening his eyes to the beauty of heaven.
His heart swelled at the excitement of seeing his son in all his wholeness.
As his vision came into focus the father found himself gazing into the unforgettable brilliance of his son’s dazzling blue eyes. He held his gaze, not wanting to look away, captured by the experience of being able to look straight across into his sons face; finally they stood as equals.
Smiles grew and laughter echoed as they embraced once again.
It was only as the father slowly withdrew that he noticed he wasn’t standing, but rather sitting opposite his son.
As he looked down his spirit stilled. He realised his son remained in the same old, battered wheelchair.
Like a dawn light sweeping across the land, he began to realise that he too was strapped into a wheelchair.
With confusion in his eyes he looked up again at his son’s face, who hadn’t stopped laughing or smiling. Without a word from his father the son began to speak.
“Dad, welcome to heaven.
You’ll love it here.
Don’t worry about the wheelchair it doesn’t stop you enjoying all the best of living.
Here we don’t value independence because its all about interdependence.
No one is burdened with care as we all help one another, living as God created us to be; part of one community, his family.
No one is in need because we share.
No one is left out because we are inclusive.
There are no disabilities because they only exist when the world does not accommodate our needs. Our vulnerability is not weakness, but an opportunity for love and relationship.
Everything God loves is here; peace, joy, hope, love and faithfulness.”
The father’s mouth dropped open as he began to look around heaven.
It seemed everyone had a ‘frailty’; a need that was supported by others in the community.
This was a tactile world, alive with colour, smells and noise. Everywhere people were signing as they communicated; there were no stairs, no inaccessible places, no isolation, no burdens too heavy to bear.
All around him he saw serving with laughter and love without limits.
‘So this is heaven, this is healing.’