More hours in the day

365/270: Ran out of time

Sometimes I feel that life is passing me by, not slowly either, but with ropes of steam and spark-spattered wheels and a hoarse roar of power or terror.  It’s passing, yet I’m the one who’s doing all the moving. 
~Martin Amis, Money

Saying I need more hours in the day is becoming no laughing matter. It feels like it is becoming increasingly difficult to fit all the care Lil Z requires, care for Vegemite (and now meeting all the requirements of her school), my job, daily household chores and accomplishing all those other things you have to do in life.

This really came to my attention a few days ago, when I received a notice that I’ve been given a penalty for filing my income tax late. To be honest, since I now have to file income tax annual in 3 different countries – despite living and working in only one for the past 3 years – I’m not surprised I lost track of the deadline, but still, I was horrified. I am a highly organised person who does not like to be late – how could I miss something as important as filing my income tax?

It also comes after yet another weekend where I feel like I accomplished very little. I know that not everyone sees weekends as a time to “achieve” but I’m married to QB, who likes to do a weekend list of everything that needs to be done and methodically work through it. I used to like to do that, too. Except, now, one of us has to look after Lil Z (and to a lesser extent Vegemite) while the other gets the satisfaction of crossing tasks off their list. And I am usually the one, proverbially left holding the baby.

It also follows a declaration by Vegemite that I am “not as much fun” as her daddy. QB smiled smugly in the background while she declared this – secure in his title of Fun Daddy. However, I feel like I often don’t have the time (or energy) to be a fun mummy. And during my darker days, that makes me feel badly that not only am I not being fun, but I’m not being a good mother to Vegemite.

But competitive fun-ness aside, it is often difficult just to fit everything that needs to be done for Lil Z into a day. In an effort to track that we’re giving the right medication at the right time, doing all the therapy we’re meant to do, fitting in the right amount of feeds at the right time, I made a check list the other day. It ran to nearly 3 pages.

It starts with her medications. She needs to have her Motilium four times a day, half an hour before a feed. The Motilium comes as one (very small) tablet, so every morning I need to cut a tablet into quarters, then crush one of the quarters, dissolve it in water, draw it up into a syringe and give it to her via the PEG. This needs to be repeated three more times during the day. She also needs her three anti-seizure medications (all of differing dosages) twice a day – ideally after food. She also has problems with constipation, so I need to keep track (yes, I have a poo diary) and when she hasn’t had one for a day or two, she gets Movicol – which is in a powder form, so I have to dissolve it, draw it up into at least 2 syringes and give it to her via PEG.

She also needs to be fed three times a day plus a long, slow over-night feed – all through her PEG. Her dietician and I have worked out the best routine is 200ml in the morning, 200ml at lunchtime, 150ml at dinner and 250ml overnight. However, she can only manage the PEG feed at certain speeds (which also depend on if she’s awake an upright or asleep and lying down). This means that if she has a long morning or afternoon nap, there simply isn’t enough time to get the whole feed in her before the next one is supposed to begin. The same can happen if we need to be out and about – although I’m getting better at running feeds on the go.

She also needs her sleep. Or if not sleep, some down time in her cot. So, although her naps often come as a relief, they’re also periods that need to be planned around. That’s two naps a day and a 6.30pm bedtime that interrupt meds, feeds and therapy every day.

In addition to all the ordinary personal care things, like washing, bathing, and changing nappies, Lil Z also needs eye drops (and sometimes an eye ointment if her eyelashes are irritating her eyes badly). The stoma site for her PEG needs to be cleaned at least once a day, rotated daily, and when it is looking red or “granular” it needs regular saltwater soaks.

On top of that are the appointments – therapy and medical. The therapy appointments are more regular, but at least we rarely have to wait long with them, whereas the medical appointments can take hours. And managing the appointments – each medical appointment needs to be confirmed and blocked out on the calendar. And the conversations with the Neuro Nurse, the Gastro Nurse, the Paeds Registrar whenever sometime new or suspcious occurs…

And then there is the therapy that we’re supposed to be doing at home. She should have her arms and legs brushed as part of her sensory diet three times a day. She should practice sitting every day. Once her leg is stronger, she should also practice standing every day. We are supposed to be splinting her arms for as long as possible during the day to try to break her hand wringing and ear scratching habits. And doing tummy time. And practicing cause-and-effect and turn-taking. And a lot of other things as well.

Trying to fit all that, plus all the new responsibilities that come with Vegemite starting school (uniforms, packed lunches, getting to school on time, remembering sports shoes on Tuesday, Wednesday and Friday, swimming and gymnastics on Thursday, library book and bag on Tuesday, Open Day, Family Fun Night, Parents’ Evening, Family Chapel, etc). And on top of it all, trying to continue to have a career…

Lil Z’s lovely paediatrician told me once that we were all doing our best for her – him, her neurologist, and me and QB. We’re never going to get it completely right, but that we were all going to continue to do our best, because that’s all we can do for her. I know what he means, and it was a great comfort to know that he and Lil Z’s Neuro, while not always having the answers to the Great Lil Z Mystery are trying hard,too. However, I’d still love a couple of extra hours in the day, so that I could go to bed at night feeling like I’d accomplished all that I needed to with Lil Z… and get my taxes in on time… and still have a bit of time left over to have some fun.


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