We had a meeting with Miss Z’s paediatrician to discuss Miss Z’s life limiting condition and where will want to draw the line on medical intervention for her.
Miss Z’s new carer didn’t meet expectations and we let her go after only a week.
Miss Z appeared to come down with a gastro bug, my husband came down with a chest infection, and my back started really hurting.
And then, Miss Z got worse and ended up in the hospital for a week.
It was a pretty scary week during which no one really knew what was making her so ill.
Fortunately, after three days of IV antibiotics, she started to wake up and after seven days she was allowed to go home. Her last few days in hospital were tough.
Not because she was unwell, but because she was starting to feel better – and therefore let us know how she felt about being in the hospital.
One night she didn’t sleep at all, instead opting to scream inconsolably for hours on end.
The following night, she didn’t scream all night – she threw furious tantrums, followed by silent periods of glaring angrily at me.
During the day she was unsettled and would pull her hair if she wasn’t getting constant attention.
So, I wasn’t expecting an easy time when we came home.
I was just hoping I’d be able to grab a few naps during the day since we wouldn’t have doctors and nurses coming and going once we were home.
The first night was a bit like that.
She was unsettled and didn’t sleep well.
And then it happened.
Miss Z settled.
And she cheered up.
And she suddenly became more aware and interactive than I’ve seen her in years.
She spends much more time looking around her and makes eye contact when someone speaks to her, a big change from the fleeting glances she usually gives people.
This morning she intently watched Frozen and ‘sang’ along whenever there was a song.
This probably makes me the only mother in the world who is happy when their child sings along to ‘Let It Go’.
And she suddenly has so much to say.
She spends her day chattering to herself and anyone who will listen.
And it isn’t just making noise – she seems to be using her voice to engage with the people around her.
Miss Z has also started to pout.
When she’s unhappy she sticks out her lower lip.
It is quite possibly the cutest thing I’ve ever seen.
I’m not sure it quite has the effect she wants, though, since I can’t see her pout without laughing.
She is even smiling more.
For a girl who rarely smiles – and almost never smiles spontaneously – it is so wonderful to see.
And just now – literally while I was writing this – she started giggling.
She never giggles, but she just did it now.
And she did it long enough for me to catch the moment on my phone.
I am so grateful for this time, for being able to see Miss Z as a happy and content little girl.
It is a timely reminder that there is more to being Miss Z’s parents than worry and hospital visits; that she is also a sweet little girl with a sense of humour and an iron will.
It also encourages us to engage with her even more.
We have always presumed competence – believed that she understands us and what is going on around her.
But sometimes it can be hard to hold up a one-sided conversation when she doesn’t look at you or respond when you say something.
The simple act of her looking at the person who is speaking to her has reinvigorated us and reinforced our belief that she is indeed aware of things going on around her.
I wish I could video every moment of these days to watch when things get hard again.
But for now I am just thankful that we have been given these beautiful days with Miss Z.