A summer morning

A summer morning.

It starts with a cry of immediacy and urgency. A yell that proclaims: I am alert to this world that is so hard for me to just exist in.

There is absolutely no obvious reason for the upset this morning. There does not need to be. She has slept softly enough the previous night and stayed asleep. A gift.

Yet the morning is broken with a period of five to ten minutes where simply being in her body anew seems distressing for her. Sustained anger. There is absolutely nothing we can do to ease this discomfort. We remain consistent, present and supportive until it passes.

She eventually indicates that she wants to go downstairs. On her terms. On my back. I carry the wholeness of her, knowing to stop on the one step she needs to touch with her feet. I know not to miss this step. Her hands clutch and pinch at my body.

Now more alert in her body, hunger is apparent. She exists without any ability to express what exactly it is she wants to eat. She refuses a substantial meal, so she snacks and grazes on foods that wouldn’t normally be classified as breakfast. This is safe. This is what makes yesterday like today and tomorrow like today. These foods fill a gap, so that’s what we do. That’s life with restricted eating. Food is food.

Constant physical input is expected from the moment of waking. Touching. Scratching. Rubbing. Simply having someone beside her. I have to make sure I immediately run to the toilet when I wake because I can’t really be away from her during the first twenty minutes of her being awake without causing further upset. Doubling. I am alongside her.

She has an immediate urge to settle herself into the day through repeated patterns. She needs access to her iPad so she can play the same clips again and again and again. That’s what eases her into the day. This is safe. This is what makes yesterday like today and tomorrow like today.

Personal hygiene is the next challenge. I’ll leave it at that.

Clothes. Getting dressed is hard too. At the moment, for some reason, dressing the lower half of her body seems to create more upset than it ever has before. There’s lashing and some kicking, but we persevere.

It’s time for the day to begin.

Begin it must, and does.

My thoughts immediately shift to where we should go and what we should do with this day. The mental load starts instantly.

I’m sad that nothing is simple.

I feel detached from a life where these things happen naturally.

I am embarrassingly reliant on my four-year-old daughter. I’m ashamed of that. Angry too.

We make it to the car, and that car takes us to the park.

She doesn’t want to leave the car.

I have to get her out.

People look and assume it’s bad behaviour.

I lie on the ground with her, making sure she doesn’t bang her head while simultaneously pretending everything is fine and encouraging my four-year-old to run ahead and enjoy herself. A fucking stupid and ignorant woman scolds me because the child isn’t wearing shoes. “Did Mammy not get you shoes to wear?”. I am ashamed that I am embarrassed.

Two children laugh at us.

I’m relieved the playground is largely empty.

We go without shoes. Or socks.

We do what we can.

She doesn’t play with her sister.

She does her thing.

She’s happy again.

It’s lonely though.

I’m lonely.

I’ll go again tomorrow.