Most people thought 2016 was a pretty rubbish year, what with the death of so many beloved celebrities and Brexit and the Donald. For Miss Z, however, 2016 was a year of recovery and relief after a long, hard, unhealthy 2015.
We had some big milestones in 2016, the biggest being Miss Z starting school – and attending five days a week. At the end of 2015 – after month after month of chronic chest infections and hospital admissions – I raised my concerns with her school about Miss Z attending the full 5 days. I just didn’t think she was strong enough, that she had the stamina to get through a full week. Miss Z’s school – who no doubt hears the same thing from many of their parents – acknowledged my concerns and told me to “see how it goes”. And how it went was better than I could have hoped. Miss Z thrived at school and although she was usually exhausted by the end of the week, she coped brilliantly. During the last term, she even attended school “camp” – which included a trip to Sea World and a sleepover at school. And the big smile on her face when she got home the next day told me how much she enjoyed it.
Not only was school a success, but she also started going to school on the bus. This gave her some more independence and also saved me having to do the school run to two different schools in completely different directions every morning and afternoon.
Going to school has also led to some exciting progress with her communication. She now uses her YES and NO cards consistently with eye gaze (she looks at “yes” or “no” to answer questions) and fairly consistently by hitting the card she wants with her hand. Her teachers have been using a PODD communication book with her during the year, and she is becoming more consistent with it, even with more complex ideas. For example, when she gets upset in class, her teacher will ask her what is wrong, and at times she has been able to tell them that she is uncomfortable or bored or feeling grumpy. Imagine how important that is to a girl who up until now has simply had to wait for the people around her to figure it out – or not.
We had a lot of little milestones, too. Miss Z went to her first (and later her second) movie in a cinema and managed to stay for the whole film – and even enjoyed it. We all went to see Cirque du Soleil’s new performance, Kooza, before Christmas and the look of awe on her face (and her sister’s) at the start of the performance was priceless.
We also got our first piece of funded equipment – Miss Z’s beloved gravity chair. It wasn’t a fast process, but it is great to have a new seating option for her (in fact, she’s sitting in it now, watching cartoons while I write).
She’s done some great things in physiotherapy during the year, and in her last session of the year even sat unassisted for 30 seconds.
And she made it clear to us that despite the fact we got her a dog, she is actually more of a cat person. In fact, she’s so much of a cat person that she’s made friends with our notoriously grumpy cat, Juno.
Of course, we’ve had plenty of challenges during the year. Miss Z’s seizures remain uncontrolled, despite being on a large number of anti-seizure medications. We had high hopes for the Ketogenic diet, but it didn’t make a difference at all. We had also hoped to give the doctors easier access for her regular infusions, IV antibiotics and blood draws with a portacath, but it became infected soon after it was inserted and had to be removed.
The gastro-jeujenostomy (GJ) tube that Miss Z had placed in January 2016, putting her food directly into her small intestine rather than her stomach to reduce reflux and aspiration (which had been causing her chronic lung problems) has been a major contributor to her improved health. It was a hard choice to make, but it was a good decision. However, over the course of the year, she has managed to pull her tube out three times – which had be surgically replaced under general anaesthetic.
On a broader, more political front, there have been times during 2016 when I’ve really despaired over developments in the world. I’ve wondered at how selfish, insular and cruel people can be. How acceptable it has become to ostracize and demonize people who are different. How some politicians encourage and manipulate prejudice, fear and ignorance for their own personal benefit. And I wonder what kind of world it is becoming for my daughters – particularly Miss Z, who will always be “different”.
But there have also been people in our lives in 2016 that have reminded me that there is still goodness in the world. The teachers and teacher aides that talk about Miss Z with real affection and pride. Miss Z’s carers – and former carers – who really care about her. The nurses who have helped in countless ways to make things easier for us at the hospital or appointments. The doctors who have taken the time to actually listen to what I have to say. The people who have offered to help with Vegemite when Miss Z is unwell – they may not think they’re doing much, but it gives me such a peace of mind and it gives Vegemite a much greater sense of stability in her life. The physiotherapist who told me that seeing Miss Z always brightened her day and reminded her why she loved her career. The therapists who have spent hours helping to work out the best wheelchair and home modifications for Miss Z. The key workers who are helping me plan for Miss Z’s future. Vegemite’s friends, who just see Miss Z as her sister and not someone scary or weird. And a whole lot more people who have helped and been kind to Miss Z over the past year.
So, 2016 wasn’t all that bad for us. And 2017 is shaping up to be a very interesting year, too. But more about that another time…