We always knew that life in the sweet spot wouldn’t last forever, but that doesn’t mean it’s not frustrating when you feel things begin to take a turn for the worse. Although to be honest, I’m not sure who is taking the sharper turn – Lil Z or me.
For Lil Z, the seizures have returned. Well, one seizure that we’ve seen – and a fairly mild one at that. But she had a bad day yesterday (and a not so good day the day before), which makes QB and I think that there have either been other seizures that we missed or some other seizure “activity” going on that we haven’t yet identified.
A bad day for Lil Z means nearly constant unhappiness. She doesn’t want to sleep, doesn’t want to sit in her bouncy seat, doesn’t want to roll on the floor. She doesn’t want to watch cartoons or play. Usually all she wants is to be held while you walk slowly around the house. When she was smaller, I’d put her in a baby carrier or sling and carry on with things. However, at 15kg and as tall as a 3 or 4-year-old, she doesn’t fit so well anymore.
Usually on bad days, what Lil Z really needs is some sleep. But she resists naps and cries and scratches at her ears when you put her in her cot. Of course when you get her up, she also cries and scratches. And when she does finally succumb to sleep, it is often only for a short period, and she wakes as unhappy as when she fell asleep.
On bad days, Lil Z dominates life. I can’t get too involved in anything else because I may need to drop it and comfort Lil Z. Most of my day is spent holding her and walking, cuddling, or comforting her. Vegemite often acts up on bad days in order to get attention. And when she’s not acting up, we’re usually telling her to be quiet so she doesn’t wake her sister.
Bad days are just… bad. For everyone.
It’s not just Lil Z who seems to have taken a wrong turn. I’ve been feeling tired, frustrated and uninspired. I haven’t been running in weeks. And worse, I don’t have the energy or the motivation to run – either with or without Lil Z. I missed the Gold Coast Half Marathon because I was travelling, and haven’t yet found the motivation to sign up for the next two races I was planning to run. Missing the Gold Coast Half and then not running for a few weeks means I feel like my preparation for a half marathon has been lost. I was doing 2 hour runs with the pram. I don’t think I can do that now – even if I wanted to… And I’m not going to knock myself into shape to do a half marathon by the time of the next one either – even if I had the energy to pick up my training.
So, I sit at home and feel guilty that I’m not running, but unable to motivate myself to actually run. It’s not a happy feeling.
Add to that a general frustration with life. Nothing seems to be going the way I want it to at the moment. I feel constantly guilty that we’re not doing enough therapy with Lil Z. Her development and her quality of life depend on us and I worry that we’re failing her. However, after considering leaving work to focus more on Lil Z, QB and I have decided that it’s not economically viable. So, I will continue to work (not necessarily a bad thing, as I quite enjoy part of my job) and hope Lil Z’s nanny does sufficient therapy with her. And try to find the time on the days when I’m not working to do the therapy myself.
I also get frustrated and snap at Vegemite too easily these days. She is a constant talker – she’s rarely silent for more than a moment or two – and sometimes the running commentary is just too much for me. Returning to school after the holidays means she’s been tired and grumpy and we’re not yet back in our morning routine – all of which are frustrating and stressful. When I was giving Vegemite and Lil Z a bath the other night, Vegemite pointed out that I talk to Lil Z in a kind voice, but only shout at her. I realised, she’s probably right. And then last night during bathtime, Vegemite asked that if she were like Lil Z and Lil Z was like her, would I give her more attention? Ah, the guilt.
Added to it all, I’m not only lacking in energy and motivation, but my back and hip have started hurting again. I thought a little break might do it good, but instead it seems that a break followed by a lot of carrying of Lil Z has made it worse. I know its bad because it hurts enough to prevent me from sleeping at night – even though I’m exhausted.
So, I apologize dear readers, for the pity party post. However, I’m lacking in inspiration at the moment for things more positive. I’m trying not to wallow, however. I’m taking Vegemite to the farmers’ market this morning and I’m going to try to force myself to go for a gentle jog later today. We go back to playgroup on Tuesday – which always makes me feel better. And Lil Z has an appointment with her paediatrician this week, so perhaps we can adjust her meds to get back to the sweet spot. And hopefully recounting to him the great strides Lil Z has taken over the past few months when she’s been seizure free will remind me that life isn’t all that bad.