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. When you are on your 12th sleepless night, and I mean sleepless rather than disturbed, it feels like you can't explain how you're feeling to anyone. Its suffocating. Whenever I say thing like this I am always inundated with truly uplifting offers of support, help, babysitting, even food. All of which are graciously received even if I know that I will not be able to take them up. The problem is that when she wakes in the night and she's screaming, its us she needs. Even on the nights when my husband is sitting up with her, when I hear that scream I am awake and with her. It's impossible to ignore. My husband is the same, we have bizarre passive aggressive arguments in the night. 'You go to bed' 'No no you go to bed, you need it more than I do' 'why did you get up, I'm fine' and so on and so forth. But we can't leave her, we just can't, the need to comfort her is too deeply rooted to be overridden even by total hallucination-inducing exhaustion. We are there, we are always there when she cries. The whispered conversations in the night about how helpless we feel and how scared we are, bring on that lonely feeling. Its quite an achievement to feel lonely when you are crammed two adults and a child into a toddler bed, clinging on to each other for want of anything more constructive to do.
Then the fog lifts albeit temporarily, and she sleeps a night. You will usually find a flurry of Instagram photos and Facebook updates on those days as I suddenly feel like I could take over the world. All of this emotion and introspection is completely self-indulgent because when Mojo wakes up on a good day you don't see her lamenting the pain and sadness of the weeks she was ill, you just see the smile. For me to use the word infectious in a positive context is a bit rich but there is no other word for it. Her, 'what a lovely day I'm having' smile could light up even my most self-pitying mood. What's more she is instantly ready to get back to work. None of the maybe I'll just take it easy for a bit mentality for this girl, nope, crack on, back to school please I've friends to see, people to smile with, things to learn.
The day after Mojo's return to school we had a meeting which was scheduled as a six week catch up. The school had been assessing, observing and monitoring Mojo for her first half-term to create a base line. A base line from which to create her targets and build on all her skills. A base line is where we start from. I don't know what I was expecting but it wasn't this. This blew my mind. I think it's because it is a written, formal document. It's a concrete assessment held in my hand that has been created entirely without my involvement, this is what the professionals see, feel and understand about Mojo. I know the root of my obsession with written proof, THE letter, the diagnosis pre-natal letter that I carried around with me like the flippin 'one ring' for months and months. I told myself so many times that it must be true because it's in writing on a formal letter, with a header and everything. Even now every time I get something in writing that contradicts 'no quality of life' I feel safer, I feel like Mojo is safer. Madness I know, and yet...
The assessment is broken down into four key areas. Personal, Social, Emotional Development, Cognition, Communication and Physical Development. For each of those areas there are nine bullet points. Each bullet point list a different ability, a skill, an achievement. That is a list of 36 things that Mojo can do. Things she can do that are worthy of bullet point status.
Each page features pictures of her doing these things.
I am resisting the urge to list each and every one of the 36 things here.
But indulge me while I list my favourites...
- A delightful and sociable girl who likes to be busy.
- Shows concern when someone is unhappy
- Understands imaginative play and likes to feed dollies
- Uses a range of signs - some of these are her own
- Can hold a writing implement and scribble attentively
- Can sit cross legged for short periods when supervised
- Can shake, squeeze and push objects
- Can weight bear when standing with support
- Works very hard
In the big scale of things these achievements for most parents would go unnoticed. Sitting. Drawing. Standing. Holding a toy. For Mojo these are monumental achievements reached through sheer determination, bloody minded stubbornness and unrelenting hard work.
P.S Anyone remember