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).