Ok, so where do I start?
My name's Lexie and I'm 28 years old. I've been married to my amazing husband for 7 years and we have a beautiful daughter Maddy who has just turned 5.
Maddy was born at a tiny 23 weeks and 5 days and weighed only 1lb 9oz, she was so small it was scary. Doctors told us there was less than a 10% chance she'd survive and almost definitely if she did need some very special care in future weeks. We spent the next few hours just gazing into her mesmerising eyes and hoping she'd stay strong!
After 9 long weeks hooked up to a life support machine, two resuscitations and another 6 weeks in the special care unit we were finally aloud to bring our daughter home.
Due to her premature entrance into the world, Maddy has severe special needs and the last 5 years of our lives have one giant learning curve. She has enormous seizures which often end in calling the emergency services as she is allergic to practically every medicine such as Buccal Midazolam, therefore we have to carry oxygen with us where ever we go. Maddy is also fed via a gastric feeding tube as she has never been able to feed or swallow orally.
Even though she faces endless trips to the hospital and a life that is one big question of when, she is such a happy cheeky little girl. She communicates via British Sign Language (when she wants to... she usually tries to pull the ignoring card with people!!!) she is so aware of the world around her and what's going on , and often likes to let people know she is there by shouting or squeeling.... and if she's decided she doesn't particularly like you, you better be quick on you're feet as she is fast.
At the end of last year we were surprised to find out that I was pregnant again with a little boy. It has been such a roller coaster ride of guilt, bad feelings and excitement; but more than any thing the anticipation of what life will be like once the new babies born.... If things went Maddy's way she'd have him sorting hula hoop packets out into flavour categories as soon as he's home. (This is her favourite autistic thing to do is to sort things into piles).
I'm sorry this is so long, and thank you if you've taken time to read through it all, I really do appreciate it! I can't wait to get to know some of you SEN parents and have a chat about life and the future; something which I know is a very precious thing.
Lexie x