• Ali Isaac

A Parent’s Hopes and Dreams for their Special Needs Child

Updated: Mar 11, 2020

Carys modelling her Santa top, Christmas 2014

Carys modelling her Santa top, Christmas 2014

It’s 2015… Happy New Year! As it begins, and life is restored to normal after the frenzy of festivities, we turn to reflection on what has been, and what is to come. The turning of a year is a time to renew hopes and dreams, make plans, set goals and stride out confidently along the path to achievement.

Yet more often than not, our New Year Resolutions, which begin with such good intent, often fizzle out in failure, rather than sizzle with success. The reason for that, is that we apply a little too much of the dream to our hope, instead of tempering it with a touch of realism. Overdose on that realism, though, and the hopes and dreams disappear; one will never achieve anything.

This new year is also my daughter Carys’s ninth one. I am well aware of the significance of the ninth year. I felt it with both my sons, but never as keenly as I do now. In Celtic terms, three is sacred; nine is three times so.

A child’s ninth year is the last of her babyhood. It begins the headlong rush into puberty, and the rampant teens, which in turn precede the race into adulthood.

I watch this transition in my boys with awe, fierce joy, and a touch of sadness, as I trail disconsolately along the sidelines. They are chasing dreams of their own, and I can only hope that in pursuing mine, I have helped set their feet on a clearly marked path, one which life’s adventures does not allow them to deviate from so greatly, that they are unable to find their way back to it.

So what are my hopes and dreams for them? Much like any other parent, and in no particular order; that they enjoy learning, and are stimulated by it; that they find their niche, their talent, be it music, drama, art or sport, and nurture it and are fulfilled by it into adulthood, that it never goes to waste; that they respect and accept those who are different; that they develop interests which occupy their free time and intrigue them all their lives; that they establish a career which brings them challenges and satisfaction throughout its lifetime; that they travel the world, and experience other cultures; that they earn enough to never struggle with paying a bill or affording a holiday, but not so much that they forget the value or privilege of money and all it brings; that they are prepared to work hard for what they want and the people they love; that they are strong enough to shoulder the burden of responsibility; that they have a forgiving sense of right and wrong; that they never know heaviness of spirit, but that they experience sorrow in some measure, that they may appreciate joy; that they develop strong bonds in their friendships; that they never lose their whimsical sense of fun; that they laugh a lot; that one day they find their soul-mate; that they give a little back to the community in which they live.

Not so much to hope for, right?

Once, not so very long ago, I used to dream of those things for Carys, too. I pinned my hopes on physiotherapy, occupational therapy, speech therapy, special education, and my zealous efforts to repeat it all at home. Once a week, I drove her an hour each way to music therapy, which she hated and I could ill afford, because I heard that it had miraculously unlocked the power of speech in autistic children.

We chose our house because it gave us room for walkers, wheelchairs, lifts, and hoists. It also had a double story garage, perfect for adapting to our semi-independent special needs teenage daughter in the future.

Hopes and dreams. Every January, I look at Carys and think to myself confidently, “This year, you will walk. You will say ‘mama’.”

She has been this close to walking and talking since she was three. No physical reason has been determined for keeping these abilities from her. Still, I’m waiting.

The New Year has come and gone. Surprisingly, for the first time, it passed me by with less yearning and more contentment than ever before. And I did not look at Carys with renewed expectation.

Does that mean I have lost all hope, or forgotten how to dream?

Of course not! I have just modified them, and distilled them down to what really matters.

So. my beautiful, special little daughter, who is as much a mystery to me today as the day she was born, here is what I wish for you this, your ninth year; that you stay well, suffer no pain and endure no nasty treatments; that we continue to work together to find a means of communication which works for you; that you walk if and when you are good and ready, but most of all, that within the confines of your life, such as they are, you experience nothing but happiness and love.

Because if it’s good enough for you, then it’s good enough for me, and if you’re content, then so am I.

#CFC #raresyndrome #specialneeds #motherhood #NewYearResolutions #mothering #NewYear #disability #disabled #hopesforourchildren #CardiofaciocutaneousSyndrome #wheelchair #Carys

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