A map of Z

A few weeks ago, after reading an article about a mother who created a “care map” of her special needs son, I decided to give it a go. I had no real idea what I wanted to include, other than all the people and appointments we juggle – as well as the positive and funny things come up daily in my life caring for Lil Z. After one false start – I’d been feeling bad about work and suddenly the map spiralled into a diagram of the downfall of my career – I got into the swing of it. In fact, I started it at 4.30am after getting up to deal with a massive vomit from Lil Z and deciding to start my map instead of going back to bed.

I added to it over the next few weeks. Although the issues and people are quite straightforward, I kept thinking of new details of life with Lil Z that I wanted to include, to the extent that I’ve now completely run out of space.

And although I suspect it may look completely overwhelming, I really enjoyed doing it. Yes, it made me realise just how much we deal with, but it also showed how much support we receive. And how Lil Z is becoming her own, unique little person with her own unique little personality.

At the same time, I decided to do a tally of 2012. It had signficantly less of the feel good factor than the map. In 2012, Lil Z had:

Over 36 seizures – I was a bit lax at the start of the year with my record keeping, so the number is probably higher
21 appointments with doctors and specialists
34 therapy sessions
Over 17 hospital visits – including admissions and trips to the Emergency Department

She also had two EEGs, was prescribed four anti-seizure medications, underwent two rounds of genetic testing (still waiting on the results of the second), one week-long stay at the Ellen Barron sleep center and one assessment by Disability Services Queensland (DSQ) followed six months later by some back tracking by them – although that now seems to be resolved… at least temporarily.

So, as I keep all Lil Z’s plates spinning, all the balls in the air – whatever analogy you’d like to use – I hope that just maybe all that spinning and juggling is worthwhile and I’ll be back in early 2014 to report a decline in seizures, appointments and hospital visits (but I’ll still take all the therapy sessions you can throw at us).