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This one is about: Looking Back - CA Adult's Viewpoint

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Looking Back - CA Adults Viewpoint

Times have changed a good deal for those of us who are cleft-affected. Like with most other medical and family issues, there is greater awareness today than 45 years ago, when I was born.

But I suppose some of the issues, for parents and children, are the same. My parents have both passed away. I have a lot of compassion for them, what they went through when I was born. They had little support from any corner. I'm sure they would do things differently now, given greater opportunities for information and support.

Here's some of the things I wish had been different when I was born and as I grew up:

I wish my parents had known in advance I would be cleft-affected and prepared themselves fully; no ultrasound back then.

I wish they had known that cleft lip and palate has nothing to do with mental retardation or other developmental disability.

I wish the hospital had provided a trained counselor who could help them talk about their feelings - well before the birth, and after as well. And who could educate them thoroughly on the whole issue.

I wish my parents were seeing a marriage counselor so that the strained relationship between them could have been strengthened before I was born. After my birth, the strain between them just grew worse and worse. My mother blamed my father, the genes were on his side, she made a point to say.

I wish that since my mother couldn't bear to look at me or hold me when I was first born, that my father had done it instead.

I wish that whenever anyone asked my parents about me, they had firmly, in a clear, relaxed voice, looking at me and including me in the conversation, told people simply about the cleft. No whispers, no averted gaze, no flushing with shame.

I wish that as I was able to speak, my parents had books and stories, videos that could tell me about my cleft, and that it could all be spoken of openly, freely, lightly.

I wish as a child I had contact with other children with clefts and their parents - and that I could have grown up with a sense of understanding and camaraderie with others who are cleft-affected, rather than a wish to avoid the whole subject and pretend it doesn't exist.

I wish that my parents and teachers in school had talked to each other about my cleft issues and that I could have been integrated into the classroom in ways that might have buffered the teasing and hazing I got from my classmates.

I wish I would have known all about all the surgeries and dental work I would have in advance, and know more about what would be done, and what to expect each time.

I wish that my image of myself could have been taken from loving admiration and pride. I could see in my parents' eyes when they looked at me.

I wish my parents could have known that most of my self-image isn't gathered from looking in the mirror - it is from the secure, stable, warm, loved feeling I get from what I see when people who love me are looking at me. I don't see my face as I go through the day - I just see people's reactions to my face.

I wish I'd had a foundation, right from the first day, of being looked at not in pieces - a lip, a nose - but looked at as a whole, a whole being. I wish the looks weren't focused on what was wrong, I wish they were looks that said, we love you, all of you, you're our precious child and we love ALL of you, as a whole, including all your parts and pieces, the ones that need mending and the ones that are fine as they are.

I wish when I was lonely and depressed as a child, and begged to see a psychotherapist, that I had been allowed to, instead of being told, with anger and shame, that there was nothing wrong with me. I wish I had been supported and encouraged to see a therapist for as long as I felt the need, even if that meant going regularly for years.

Some of the responses I have received from people on the list are from those who are somewhat younger than I who relate to my experience in various ways. My advice is:

1) Make sure your surgeon is the best one possible to do absolutely all that can be done to improve your appearance, and do it as soon as possible, don't wait. Fly all over the globe if need be to get the right work done for you.

2) If you're depressed, isolated, angry - find a highly trained psychotherapist you like and see him/her at least once a week for as many years as it takes. Deal with, feel and make sense of all the feelings you have, all the relationships in your family that might contribute to your emotional state. Talk about it and don't hide it all inside in a secret world that makes you more and more alone.

3) This is advice I've only just taken myself, and I'm glad I did: Get involved in a group like Wide Smiles and participate in whatever ways might be helpful, so that parents of cleft-affected children, and cleft-affected children, teens and adults will have a place to go for support, information, and understanding.

Dan Shaw
Nyack, NY

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