Best article I've ever read on having a child with Down's syndrome.
I just emailed him:
Dear Simon
I hope you don?t mind me emailing you but I just had to write to thank you.
I knew from the header I?m not a saint just a parent? that this was going to be a great feature and I wasn?t wrong.
You see I?m a parent of two wonderful girls, Charlotte and Eve. Charlotte will be five in December and Eve will be one. Charlotte has Down?s syndrome and I, like you, have spent the last five years saying things like ?No it doesn?t take a ?special parent to raise a ?special needs child?? .
You put into words, far more succinctly than I ever could, exactly how I feel.
The part about love and how we can?t imagine the day-to-day process of living with things and getting on with the humdrum job of loving.
Of how when trying to imagine what it was going to be like to live with Eddie you could imagine the dramatic bits, the difficulties and how you couldn?t imagine living day to day with the real Eddie.
Since having Charlotte I?ve been asked many, many times ?What?s it like to have a child with Down?s syndrome?? and I always answer ?I don?t know, I only know what it?s like to live with Charlotte?.
Parents-to-be are so terrified at the thought of how they?ll cope if their child was to have Down?s syndrome and I have tried to explain to them. As you wrote they can image reading them Narnia stories and applauding their concerts but they can?t get their heads round ?living with a child who grows on you?. And that?s just it isn?t it. You?re not presented with a new born baby that is so disabled that it?s impossible to cope. You?re new baby is just a baby and all the other stuff that comes with having a child with Down?s syndrome just happens, slowly and you just ?get on with it?.
I related 100% to ?I don?t have a child with Down?s syndrome : I am Eddie?s father. There is a huge difference between the two things?. I try to get that across to a worried mum-to-be about once a month.
I laughed out loud when you wrote ?I have spent the subsequent five years living with him. Not living with Down?s syndrome : what a ridiculous idea?. Thank you, it was so wonderful to read that someone else feels exactly the same as me.
It was wonderful to go on to read about Eddie?s education and to read you saying ?It?s not about a child passing an exam, it?s about a child growing into himself?. Isn?t that a wonderful thing to realise as a parent.
There was more laughter at ?Cheerful little soul? Certainly not?. If I had a penny for every time some one said to me ?They?re very loving aren?t they?. Yes Charlotte loves a cuddle, is caring, sweet and funny, she kisses my eyelids, kisses me all the way up my arm to wake me, has kissed my tears away and said ?don?t cry mummy, all better? but she?s also pulled, my hair, smacked me round the face and shouted ?nooooooo? at me for asking her to put on her coat.
I did an interview for the Evening Standard once and in it I said ?I wouldn?t change a hair on her head?. Again, you say the same as me but just much better! ?I can?t say I?m glad Eddie has Down?s syndrome, or that I would wish him to suffer in order to charm me and fill me with giggles. But no, I don?t want his essential nature changed. Good God, what a thought?. I couldn?t agree more Simon.
I have also said, many times, that the world is a better place for having Charlotte in it and I join you in saying to the world ?Don?t pity us, we are to envied?
Thank you for writing the feature Simon, not only because I enjoyed reading it, loved to read someone put into words exactly how I was feeling, and do it so well, but because I think you will have touched many, many people. Hopefully a lot of them will have learnt something and hopefully will not judge quite as quickly as they may have done before.
I?m off to purchase ?All About Us? and no doubt you?ll hear from me once more after I read it.
It was lovely to ?meet? you and Eddie through reading the article Simon.
Love to you and your family, from me and mine,