Sunday, 15 March 2015

Mother's Daze

Even the most cynical of people, the 'I don't do Hallmark Holidays' types, have to concede that Mother's Day is worth celebrating. Mother and child; the most fundamental of relationships. I say this as someone who recently gave birth and one who has been lucky enough to be the recipient of the most amazing mothering for all my life.

Most of us learn how to be a mother from our mother. In practical day to day terms 'Mum how do I get poo out of white cotton babygros' 'Mum she hasn't stopped screaming for 5 hours what do I do' and so on and so forth. Also in experiential terms, we remember things from our own childhood that taught us lessons. It's not just the practical stuff either it's the love. That unconditional, all encompassing, relentless love. As a child you don't 'get' it. You know that you are loved but it's only as an adult that you understand the love.

For me there is a moment from my childhood in which I remember being struck by how loved I was by my mum. When I was probably 9 or 10 I had just started doing my own shopping for gifts rather than just putting my name to whatever my sister had chosen. I had gone into forget-me-not (a card and tat shop in the village) and chosen a tiny little teddy bear pin for Mum's Birthday, it can only have cost a couple of pounds. Mum had made all the right noises when she's opened it and off I went to school. When I got home that night she was on the sofa and she had been crying. I remember it so clearly because my first thought was that her dad must have died (he's 91 and going strong!) Mum told me through the tears that she had worn the pin and it must have fallen off and she had lost it. She was devastated. Even at that young age I knew that it couldn't possibly be the loss of a cheap "gold" pin that had upset her so much. It must have been because it was from me, because I had chosen it. The loss of that pin made me feel so immensely loved that I can remember the feeling of it even today.

It's clichéd to say that you don't appreciate what being a mother involves until you are one. It is also foolish to make sweeping generalisations about mothers given that we are all humans and therefore fallible. Every mother/child relationship is as individual as each romantic relationship is. As my mum has always told me the only two people who ever truly know a relationship are the two people in it. Therefore you must forgive the clichés and generalisations I make and know that I have in mind today those people whose relationship with their mother or their children does not fall into the flowers and cards category.

Saying all that, fundamentally as mothers we all go through the same things. It's the reason NCT is so popular and Mumsnet thrives with people sharing advice, asking questions in the middle of the night. You know you've been there, that feeling of relief when the internet automatically fills in the end of the question you are typing into the search bar and immediately you know that you're not alone!

Being a mother to child with complex needs changes the mothering experience, it complicates everything from the everyday practicalities to the dreams you have for their future. Around this time of year there are always lots of inspirational quotes, poems and 'wisdom' floating around social media about Mums and mothering. Often the theme is one of cherishing the moments while your children are little and making the most of them because one day they will grow up. One that I always notice is the one that talks 'the last time' that one day it will be the last time they want to sit on your knee for a cuddle or the last time they will be tucked up in bed or the last time they will hold your hand just because. It runs through me like cheese grater because for those of us with children with 'life limiting conditions' that checklist could be every day of our life. We live in dread of the last times, it's not just a whimsical poignant reflection on the passing of time it's the daily nightmare we try and push to the back of our minds. It's things like that which shine a very bright light on how different mothering is for us. Cherishing every moment is part of the territory and it is one of the positive side effects of living in the moment. I know I will never take being a mother for granted.

I'm not sure what conclusions to draw, this post is disjointed and all over the place and not what I had planned. Like motherhood.

P.s Love you Mum.

Thursday, 5 March 2015

World Book Day - A love letter

Mojo will never run around a playground. She approaches toys very differently to most three year olds negotiating carefully with her right hand and almost always giving in to the compulsion to put it straight into her mouth. Watch her with a toy or in a playground or painting and drawing and her complex needs are evident, her disabilities are obvious.

But watch her at the library and there you have a very different proposition. Watch her turning the pages of her favourite book, signing away, knowing what is coming on the next page. Watch her choosing carefully from the shelves examining each picture and absorbing the variety of book sizes and shapes and colours. Here there are no boundries, no disability. Don't get me wrong the effort it takes her to turn each page is enormous the reaching out to make choices takes time but every step is worth the reward of a new book adventure each time. Mojo's library card is dog eared and I love that. It's well used. She loves the library.

Books in the waiting room
Books were one of the first things she ever engaged with. At first with the textures, colours and shapes and then the pictures and now, the stories. Books can provide comfort when almost nothing else will. In hospital treatment rooms often nurses or play specialists try and distract Mojo with flashy toys or teddies in general this is greeted with a disdainful
look (I'm not stupid and I know what you're about to do)  A book however is greeted warmly (well I suppose if you're going to do it this will stop me thinking about it while you do). A book keeps her company in a hospital bed when everything hurts and she feels horrible. In fact when I walk into any medical appointment with her and I see books in the room I know we will be okay.

Books help to explain the world in way that we never could without them. Books about getting a
baby sister, books about going to hospital, books about starting nursery. Barriers are broken down and life is made easier for someone whose understanding of the world is hard to quantify.


It's not just for the bad times that books come into their own. Books in our house dominate the good times. When we decorated the room for our new baby a story corner was created and filled with books and interactive stories (Stories told with props to bring it alive, amazing idea and really easy to do with some sensory bits and bobs)

EVERY night without fail
At bed time when Mojo is often as her most uncomfortable and distressed a book provides the bridge from screaming and writhing to settling and breathing easy. Next to her bed is a pile of well thumbed (and occasionally bitten) books along with the complete Beatrix Potter collection which work, on occasions, like spoken melatonin, half way through Squirrel Nutkin and the eyes get heavy and often I find I'm reading the end of the story to myself!

I love the idea of Mojo learning to read. It excites me, the doors it will open and the freedom it will give her to explore worlds and perspectives that might otherwise be impossible for her to experience.

So here's to World Book Day and all the costumes and the reading and the stories brought to life. Here's to all the writers of all the books that are motivating enough to make Mojo reach out to turn the pages. Here's to all the doors books will open for Mojo and all the joy they bring her each time she sits down to read. Here's to people like the tremendous author and illustrator Quentin Blake campaigning for better representation of children with disabilities in mainstream literature for children and young adults. It would be nice to know that rather than having to seek out specialist books we could find characters Mojo can identify with in her favourite books.

So here it is my love letter to books and all the amazingness they hold in their enticing pages.

Story corner!