Dear Whole Foods Salesman

Dear Whole Foods Salesman, I’m sorry I cried….and swore at you. It was just awful timing you see. I was only back from the hospital for a few minutes to have a shower. I’d not slept properly for about 48 hours, I’d had to feed my daughter through the tube that keeps her alive, every hour, on the hour … Read More

A Sweet Base Line

Sometimes it is so lonely. Really, really, lonely. We’re not short of family and friends. Good ones. Ones that rarely say the wrong thing and regularly provide the conversation and respite that make life immeasurably easier. There are always however days (and nights, oh, the nights) when living the way we do is so isolating. … Read More

Hips don’t lie (straight)

I have to confess I’ve had a dip recently, a period during which the positives have been that little bit harder to find. The unrelenting assault on Mojo’s respiratory system has made me angry and it seems as if the smell of vanilla vomit is on everything I touch. Then there’s our latest curve ball. … Read More

School Belle

‘OH MY GOD, WHAT THE….’ Husband is doing bath/bed for Mojo’s baby sister and his distress is sincere and alarming. A familiar adrenaline rush drives me rapidly up the stairs to find him kneeling over baby running his finger over a huge purple and black bruise on her abdomen. It looked awful; internal bleeding? I looked … Read More

Manual – Change – Reality

Handling. Handling change, manual handling and handling reality all of which have been at the forefront of my mind for the past couple of weeks. At a recent hospital appointment when Mojo’s weight was taken we learnt that it had, at long last, reached the dizzy heights of the bottom of the spectrum. This means her little biro … Read More

All change please, all change.

What just happened? I was braced for a fight, I had logged all the communications, I’d read up on legalities and getting what you want from an EHCP (Education Health Care Plan). I was trudging the anecdotal evidence on blogs and websites. Then the phone rang. ‘Just a quick call to let you know that your … Read More

Don’t know how she does it?

It’s one of the things that is said most often to me. By family, by friends, by people we meet out and about and get talking to… ‘I don’t know how you do it’ ‘I don’t know how you cope’ Within the community of parents of children with complex needs the answer to the question … Read More

‘Like a room without a roof’

My husband and I have very strict rules about speaking too soon. You know the type of thing ‘didn’t they go to sleep well tonight’ ‘she’s not been sick at all today’ ‘we’ve not been to A&E for ages’ and so on. String all three together and you can pretty much guarantee yourself a wide awake, vomiting, … Read More

Aspiration and Aspirations

as·pi·ra·tion ˌaspəˈrāSH(ə)n/ noun noun: aspiration; plural noun: aspirations 1. a hope or ambition of achieving something. the object of one’s hope or ambition; a goal. 2. Medicine The action or process of drawing breath. The taking of foreign matter into the lungs with the respiratory current. Aspiration. I’ve been obsessed. Mojo’s ongoing battles with daily … Read More

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 … Read More