MARIA
  Maria is 3 and 3/4. She was diagnosed with CDC at 8 months old. We were shocked and heartbroken but by this time she was sitting up, clapping, and pointing to her nose when asked. Her consultant when he broke the news to us said, what you read about CDC you won’t like but from what I can see of Maria so far, she seems to be not typical. Just concentrate on her and, who knows, she might re-write the book.

 

I have never forgotten his words, they were especially helpful when we received all the information on CDC. I just told myself, "Maria is going to re-write the book"

 

To some degree she is doing exactly that. She crawled at 17 months, took her first steps at 23 months and was walking well by 2 and a half at which time she stood herself up without aid. She can go up and down a slide by herself and loves to swim (with arm bands). By 20 months she was saying about 10 words and she is now speaking in 4/5 word sentences. She can also recite several nursery rhymes! She knows her colours, shapes, recognises numbers 1-10 and knows all the letters of the alphabet. She recognises about 10 words consistently. She has amazed all the specialists involved with her.

 

Her major problem is her fine motor control. She finds the simplest manipulating tasks very difficult, although she feeds herself well with a fork and spoon. She also continues to mouthe everything and will put anything in her mouth including, grass, hair and stones, although she never swallows them (thank goodness!). Her obsession with hair continues but is getting better. However, she sometimes pulls her hair out so that she can twirl it with her fingers. When she is anxious (or sometimes just to wind me up!), she slaps her or my face and pokes her eyes. Again this is reducing because she is able to speak better.

 

Last year Maria went to our local playgroup; they loved her and she loved them but I decided that she needs some specialist input to help with her fine motor, so this year she is attending the nursery of a school for children with physical disabilities. She will be assessed there to decide which school she will attend next September.

 

We recently took the sides down from her cot-bed expecting armageddon to ensue but to our surprise, so far she hasn’t trashed her room and has only come into our bedroom once, but we are not holding our breath!!

 

Maria is an amazing child, she brings out the best and worst in me and every possible emotion; love, joy, exasperation, worry, resentment, anger, pride. Our lives have changed beyond recognition but to imagine a world without Maria is to live in a sadder place. She has the most zany sense of humour and we have met and made some very good friends because of her. Of course if we could wave a magic wand and make the CDC disappear, we wouldn’t hesitate, but having Maria with all her problems somehow puts life into perspective. We only worry about major things now, and Maria of course. Everything else is so incidental. I used to worry about everything, now, so long as Maria is happy and healthy I can cope with anything.

 

We hope that one day she will have a brother or sister, but for now, the love that she gives us and that we have for her is more than many will ever know.

 

The writing "Welcome to Holland" sums it up perfectly for me; life with Maria is very different to what we were expecting, but, you know, Holland is a pretty amazing place.