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Tuesday, 19 April 2011

The Grass Is Not Always Greener.....

OK so my last post about a fridge was a little boring, I'll admit it. Sometimes there's just so much to say I don't know where to start though - and OH says I already spend too much time on the computer so I have to limit myself somehow!!

I've just been in floods of tears whilst watching a programme on BBC3 called 'So What If My Baby Is Born With....'. It's all about Jono Lancaster, who has something called Treacher Collins Syndrome - google him or it if you want to find out more. Basically he has a genetic condition which affected the way his facial bones developed. The programme was all about him and his girlfriend trying to decide whether to have children - i.e. could they be sure the child wouldn't have the same condition and face the same years of bullying and operations etc.

Of course there's a whole lot more to it that that, but the bit I found particularly difficult to watch was when they met with a couple who had a 2 and a half year old girl with this condition, without any history of the gene themselves. They had to change her tubes for breathing and feeding regularly, and whilst to them it had obviously become second nature, I really can't imagine how they cope.

I know there are so many families who have to deal with illnesses in many different ways, whether it's repeated epileptic fits or bone marrow transfers, and of course they are strong for the children because they have to be. Just because they put on a brave face, doesn't necessarily mean they are coping well on the inside. I guess what I'd like to say, is that I hope everyone can be tolerant and understanding of others. Sure we all have (and are entitled to) our up and down times, but there is generally someone worse off than us.

Sasha is a very happy, generous, adventurous, loving and polite little girl - and I could think of a lot more adjectives to go in there! We love her exactly how she is, and as many people say, wouldn't change her for the world. If someone had told us before she was born that she would have autism, would we have been more prepared for the battle ahead? Would we have wanted to face that? It's a very difficult question, and I don't think anyone can answer it without being in that situation. We didn't get the choice, and in a way I'm thankful for that. Do I wish Sasha didn't have autism? Well yes, because I know she is going to face many struggles in her life that others won't - fortunately most of these she has no idea of as yet, but as she grows older they will become more apparent. Partner, work life? Just two big issues a long way in the future.

BUT. If Sasha didn't have autism, then she wouldn't be Sasha. And that's just not right. We have been blessed with 2 gorgeous girls, and for that I am very grateful.

Now someone pass me the tissue box Smiley

6 comments:

  1. I definitely agree with everything you said. I have three kids on the spectrum. 'Bot has Asperger's, and wasn't diagnosed until he was seven. By then, Tinkerbell had just turned two and started to regress. I was already pregnant with Tugboat. If I had known, would I have done anything different? Maybe. I'm so grateful that I didn't have to make that choice.

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  2. Why have I not found you sooner?!? Lovely blog and beautiful Sasha. I wouldn't want my son any other way either.

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  3. A lot of my blogging friends who have kids with special needs have written about the issue of whether you should wish away your child's special needs or not, as it is part of them. Some people say that everything would be okay if the world would just be more accommodating of our kids, and that makes sense for disabilities, but surely not for medical conditions that cause pain and suffering. I adore all three of my kids, but I would wish away some aspects of the special needs of my dd with cp and DS with asd that would make their lives easier and improve things for the rest of the family too x

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  4. Hi, this is my first visit to your blog (thanks, Twitter!) and I know what you mean. I wouldn't want BB different, but I wish his life were easier - a contradiction, I know. I'm glad I didn't have to make a choice, because without BB I would have missed out on so much.

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  5. A thoughtful post Steph. I wouldn't want my children to be different to what they are now; they are who they are and I love them for that. But I don't think I would want to know that I was going to have autistic children - this is a burden I am fearful that my children will have in the future. But what I would love most in my lifetime is to see our societies include and support our autistic people, well all people.

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  6. I watched that too, an amazing program.

    Your Sasha is just perfectly her!

    Mich x

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