I have always taken pride in doing things differently. Then along came Monty, and my husband and I wanted nothing more than to be normal, but our experience was far from that.
Monty was born not breathing. He was resuscitated, ventilated, and moved to two different hospitals where he went on to be a mystery to the doctors. There was no obvious problem with his upper airways but he failed to breathe on his own.
After three weeks, much doubt and a second opinion, Monty had a tracheostomy. To say I was devastated is an understatement. It took me about a year to come to terms with trache life and create a new kind of normal. However, I later came to realise that the trache was my friend. It saved our little boy’s life and without it, we wouldn't have a Monty. We had a prolonged three-month stay in hospital due to Monty’s difficulty putting on weight, but we finally got him home.
That's when the real hard work began.
No one can prepare you for having a child with additional or medical needs and like many parents, my husband and I are just making it up as we go along. But sometimes that’s not enough, especially when you need to manage and maintain your child’s eating, breathing, bowel movements, the basic functioning of the body or brain. You need proper support in place, whether that it is practical or emotional.
A lot of the support that we have in place now to make our lives as easy as possible was discovered by mistake; in stairwells, at the disabled bay at Mother Care car park, or through a neighbour mentioning available funding. This didn't feel good enough for me, so it is my mission to create a website that provides parents and carers with useful information and resources.
The Family Room is a forum for parents and carers of children with additional needs. It is a place for them to talk about the things that really matter to them, with people who understand because they have gone through, or are going through, something similar. People who you don't have to reassure by finishing the sentence with, "but don't worry, he’s doing really well and is happy in himself." A place where you can say that things are rubbish and people say, "yep, they are but it wont always be this hard.”
LittleBigPeeps aims to be a place where people can feel normal in a life that is a little less ordinary.
Jack Bailey is an amazing illustrator and designer from Liverpool.
His wonderful work ranges from intricate architecture and landscapes in 2-D to abstract animals made from papier mache. Through a combination of sketchbook ideas and his vivid imagination, Jack creates extraordinary characters and worlds in which they live. Most of his work is made from a range of materials, from watercolours, pencils, buttons and leaves, or whatever is at hand!
Jack’s favourite animal is a Blue Whale. He’s yet to see one but plans are in place to catch his first glimpse of a Big Blue this year. We can’t wait to see the illustrations that follow…