So after a particularly particular day, I have decided that I would share a few tidbits of my day.
After waking about every hour last night, Nicola decided that a great time to start the day was 5.14am. She wanted up, she wanted out of bed, she wanted a clean nappy, she wanted her medicine and she wanted her milk and she wanted them all in that exact order.
Then she wanted breakfast. We had tried to do some quality family time this morning and we had decided to have barbecued bacon, eggs and potato gems for breakfast. Jessica and Isabella rang Grandma and Grandad and invited them (while I was in the shower, without asking me!) so it turned into a real family affair...
Except Nicola didn't want to be part of it. It was too hot, to bright and just not what she wanted.
So she screamed, so while the rest of the family sat outside, Michael sat inside with Nicola while I cooked and then I sat inside with Nicola while everyone else ate.
We decided to take the girls to the duckponds to have a bit of down time. I normally love the duckponds, it's so relaxing and so inviting! There is usually some shade and a lovely breeze and the big girls have a great time throwing bread (that we buy specially because the ducks like soft bread too!) to the ducks, turtles and fish.
Except Nicola didn't like it. It was too hot, too bright, too noisy and just not what she wanted. So she screamed. The more she screamed the more Alyssa screamed until the ducks all got scared away. So we gave up, packed up and came home, where, despite her protestations that she was tired and wanted to go to bed, she outright refused to sleep.
I turned the blender on to blend her foods, and she screamed.
I turned the tv on for her to watch Wiggles and she screamed.
I put her on the floor with some toys for a play and she screamed.
I put the iPad on for her to play with and she screamed.
I went to the loo and she screamed.
I talked to her sisters and she screamed.
I had so many things I was planning to do today, including mow my yard so my children can play without risking being attacked by a tribe of mysterious pygmy's, and mopping my floor and doing my dishes and trying to tackle the ever rising mountain of washing, but nothing got done.
Because Nicola screamed.
My day ended with my 5 year old sitting outside on the swing crying because I broke a promise to her.
I promised her that this afternoon we would play soccer together in the yard, but I couldn't, because Nicola screamed.
This has been what a large part of our life is like. She suffers from a mix of chronic idiopathic pain and extreme anxiety, as well as frustration at not being able to express herself and not being able to get involved etc.
I do what I can, but I can't do enough and so she screams. She screams all day, she wakes through the night. We don't sleep, we don't relax, we don't get time off, we don't get a break.
This is what our life is like. It is relentless, but it is done with love.