One day….

A rainy day blog for a rainy day feeling.

My day started at 1am last night. Has been for the last 4 weeks now.

Mr Magoo, my youngest, starts screaming in his sleep. When I go to him, he is writhing in pain and rubbing his feet together until they bleed. He is scratching his sides too, when I go to touch him and comfort him, he screams and I can feel there’s blood seeping there too. This goes on for 1/2 an hour at least, culminates in a humongous fart and he sleeps on as if nothing has happened.

I go back to bed, shaken, nothing I can do.

He ‘wakes’ again at 2.30 am and again at 4am, by then he is in our bed. We can’t touch him, we can’t cuddle him, we can’t do anything because he reacts so violently and in pain. Always a fart and he sleeps again.

At 7.30 am he is awake for the day. He comes out howling, bent like an old man. Abuses me when I ask if I can help, screaming “ouch, mummy” over and over but when I go to touch him he screams to make me go away.

By now, all the healed bits of his eczema are raw again and his siblings are waking up . As heartbroken as I am, I can not do anything as he is already overstimulated by the war going on in his body.

My princess comes out, I made the mistake of engaging with her. She isn’t ready today and falls to the floor like a rag doll, screams of frustration soon follow. We know she is on the spectrum, we just have not had a formal assessment as yet. I have to leave her be until she is ready to accept me.

By now the other two are up. My little man is so good, he comes out and sits quietly, just shielding himself from the turmoil going on around him. Hugs and kisses for the first time today, I love them so much. My big boy comes out too, he is very set in routine so I have more cuddles too as I dash and make his breakfast. This one is autistic and he has a lovely rulebook I can follow (with a little bit of leeway) and he is happy and companionable too.

Mr Magoo has finally been able to pass a poo. Thank god, he is back to his sweet little boy phase. Kisses and hugs and he wants to eat. I am so happy.

My princess, she has calmed a little but it is still eggshells as the ‘wrong’ word or glance can set her off again. I don’t blame her, it has been a pretty traumatic morning even without having to deal with her own issues. I know she’s ok when she gives me a hug. As long as I don’t say a word, I’m fine.

It’s 11.30 am, three of the kids have eaten, I have a knot in my stomach. Mornings are not good for me, I can’t relax until after 6 pm if I am lucky. Food is a curse in this house, I hate it, I don’t like to cook, I don’t like eating, I can’t relax to enjoy the taste. I know if I feed two of my children the ‘wrong’ food, the eczema comes back and then the day is over.

I do have escapes here, I make fairies, I put people into pictures of fantasy and wonder. Some days I wish I could dive in and hide under the mushroom too but then I remember how horrible it feels, not to have control over your own body and it’s feelings and I know I have to be there for the kids.

I am blessed every morning when I wake to have all four of my children and my husband with me. If they didn’t wake at night, I would be worried that something is going wrong. The worst night sleep I ever had, they all slept the whole 10 hours. ..I was awake almost the entire night.

Mr Magoo will be examined come hell or high water, I want to know what is going on inside his guts. We have a restricted diet and many guidelines so forgive me if I don’t follow all the advice I’ll be getting from publishing this. Many of you are carers yourselves, I know, you know where I am coming from.

The sun will shine tomorrow!

With Love & Support,

Tarja Kelly

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