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

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 his 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 IΒ 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’d 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.

45 Comments on “A Parent’s Hopes and Dreams for their Special Needs Child

  1. Lovely post! Better to err on the side of dreams over realism. That’s not say you should become delusional in the slightest! Just remember, life is about enjoying the journey, not reaching a destination. Reading your post, you evidently full well know and adhere to this. I guess all you can do is continue to do to enhance Carys’ abilities, which will exponentially increase the quality of her life. At some level she will want to express gratitude for this amazing and unquantifiable gift you’ve given her. Know this whenever she looks at you πŸ™‚

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    • Thanks Nick! I don’t know if Carys can experience gratitude or not, but she definitely feels love, and shows it at every opportunity. She gives the best hugs ever! Sometimes though, she hugs so hard, it hurts… I mean physically! She loves to wrap her hands in my hair and pull me in close, and even though it hurts, I still melt. She has no concept that she is causing me pain.

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      • That’s pure, innocent love at it’s finest. It’s awesome to hear your words, written with such heartfelt honesty and compassion. I look forward to reading more. Wishing you and yours the happiness you deserve.

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    • Sometimes its good to know you’re not alone! I havent heard of hurler syndrome. I hadnt heard of CFC either until my daughter was diagnosed with it. So much to learn. Hope our wishes all come true for our little ones this year!

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  2. So beautifully expressed Ali!! Children are a gift and in a sense not really ours as you see with your boys spreading their wings to fly. Your little girl is teaching you so much I think. It’s not an easy journey for you by any means but I can imagine the shining victory moments are there too. Cead mile beannachta ( If I have written or said that correctly)

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  3. Wow, that was so beutiful and moving, I don’t have words equal to your amazing story. Good luck with your journey toward acceptance and whatever lies ahead for you and your family.

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    • Thank you for your lovely comment! Even as a young person, I always challenged myself to do the things which scared me, but I never realised parenthood would be the biggest, scariest challenge of all! Thank you for your good wishes, and a Happy New Year to you.

      Liked by 1 person

  4. Moving and beautiful, Ali. To love and be loved, Carys might just be able to do this more than the rest of us. The world seems to pull us away from all that is most important as we grow up, and then we spend the rest of our lives trying to find it again. But for Carys, I feel like she is closest to the essence of living and she can show the rest of us that we’re enough just as we are. At least, this is what she has done for me, and I have not even met her in person! Hugs to you and Carys, both.

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    • That is such a lovely thought Γ‰ilis, thank you! Certainly this wonderful blogging community has reacted very warmly to her, and you have definitely got a strong sense of her. That makes me feel very hopeful. Xxx

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  5. It is right to be aspirational, I hope and dream for a great many things for my son. But like you I now temper this with some pragmatism and a fervent hope that whatever life holds in store it brings happiness. Happy new year.

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  6. Best of wishes to you and your family this year. You sound like a strong person and a good mother. I’m glad to hear you’re making peace with the things that haven’t come to pass yet–yet, being the key word. You’re not losing hope or giving up. Contentment comes from knowing you’re doing your best. Giving up wouldn’t feel like that. Hoping this year is a good one.

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    • Thank you Toni, and Happy New Year to you too! Yes, I wept on Carys’s birthday, and then I thought, will it make our lives worse if she never walks, and I realised that it wouldnt change a thing! So why get upset about it? Communication would be helpful though.

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  7. ‘What really matters…’ Beautifully worded, Ali. I agree with Mark, this may be the key to unlock some mysteries. Carys can sense the change and continue at her pace.
    All the best for you and your family!

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  8. Your love for all your children swells my heart across the ocean, Ali. Bless you all. Happy 2015 to your whole family.

    Your peace with special Carys for her ninth year is a joy for you, and certainly for her, too. And maybe some perceived change in the air between mother and daughter will be a key to unlock mysteries for her, her way. I know you will appreciate your family in every case, my friend.

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    • Thanks Rachele! It’s amazing how letting go of something which has been eating at you for so long can make you feel happier! Long way to go yet though, but as they say, I’m making ‘baby steps’…

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