I often think about the paradox of disability. I have
found (with apologies to Newton!) that for every disability there is an equal and
opposite ability. Kathy Hunter expresses this eloquently in the following essay.
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Kathy Hunter is founder and president of the
International Rett
Syndrome Association. |
Each of us has our own definition of blessings. For those of us whose lives are touched
by Rett Syndrome, blessings are abundant. And although many people may see our lives as
tragic, we do not have to look far to see the many blessings our daughters have brought to
our lives. We only have to look into their eyes, and deep within ourselves.
While society sees them as a powerless people, they have such tremendous power to
change us, the ability to make weak men strong and to make strong men weep. Although parts
of our hearts withered with grief from the loss, the rest of our hearts grew so big to
make room for their pure unselfish love.
We have learned that none of us is perfect; we are all in different stages of
imperfection, all handicapped in some way. And even though the time and energy spent
caring for these girls is sometimes exhausting, they enable us to experience the rich
rewards of caring for them as we receive more than we give.
They have to be fed, yet they feed our spirits. They need help to walk, yet help us to
walk taller. They cannot speak in words, yet tell a story of unconditional love.
We may have spent a whole lifetime trying to teach them, yet every day it is they who
give the lessons and we who learn. We learn how to give and how to take, how to give help
and how to ask for it.
They give us courage when the rest of the world says to give up, determination when it
would have been easier to resign.
We learn about justice and the unfairness of having to fight for equal rights in an
unequal world.
Our daughters help us to distinguish the important things in life, Things like love,
sharing, getting along in the world, the knowledge that loved ones are safe, healthy and
making a difference.
We learn not to jump to conclusions nor rush to judgement about the way things should
or should not be. They teach us to pause and think, and to realise that words like rich,
famous, beautiful and talented are only adjectives, and not important adjectives at that.
We learn patience not only in providing for their care, but also for those who stare,
for professionals who dont always listen and for those who dont understand.
And we struggle to learn forgiveness for them all.
From our girls we learn an appreciation for lifes little blessings. Important
stuff like smiles and giggles, a spark of recognition, faltering steps, wet kisses, a day
with no seizures.
In understanding the complexity of the human brain and the many problems that can
occur, we realise that each one of us is a miracle.
They teach us that our capacity to love is enormous, greater than we ever knew
possible. They fill us with the ability to protect, nurture and care, show us how to
accept today, and dare us to dream of a better tomorrow.
They bring out the best in us. |