Lil Z doesn’t come cheap. On a monthly basis we pay for specialised childcare, prescription formula (as well as the ‘giving sets’ to get the formula into her tummy), nappies, five different prescription medications, vitamins and non-prescription medications, private physiotherapy, private hydrotherapy, regular GP visits (not just when Lil Z is unwell, but also for prescription refills and referrals), private medical consultations, and sick bags.
Until now, we have more or less managed to limit our expenses to the list above, since Lil Z is small, easy to move around and can still use much of her baby equipment. But at 3 1/2 years old, 16.5kg (36lb) and 110cm (43in), she is no longer a baby and is beginning to require more and more specialised equipment for her care.
QB and I have postgraduate degrees and professional careers and we’ve always assumed that we would be able to provide everything our children need. So, it has been a bit of a shock to begin to think about Lil Z’s needs for the future. She will need at least one hoist, an adjustable bed (possibly with a specialised mattress for positioning), a special needs car seat, and either a bath or shower chair. We will also need a wheelchair accessible vehicle and either have to make major modifications to our house to make it accessible or sell it and buy/build one that accommodates Lil Z’s needs. And that’s just what I know about at the moment…
As we’re not permanent residents or Australian citizens, we are not entitled to government funding. We are covered under Medicare (the Australian national health service) and our private health insurance picks up a small share of the therapy and prescription costs (although they make it as difficult to claim as they possibly can). Add to that the fact that all special needs equipment is more expensive in Australia – thanks to the distance things need to be shipped and the smaller population. At the end of the day, a lot of Lil Z’s costs are simply out-of-pocket. And that means that for equipment, if we can’t afford it, we can’t have it, even if we need it.
This is something that I think QB and I struggle to get our heads around. I had a meeting not too long ago with our FECS social worker who was brainstorming ideas to help us raise funds for Lil Z’s equipment. I have to admit, every suggestion filled me with a personal feeling of dread. She said that we can’t expect to rely on friends and family to donate money, because they can’t contribute every time we need equipment. So, she suggested other types of ‘appeals’ we could make – all of which made me squirm in my seat. I’m not someone who asks for help easily – I’ve always been more of a do-it-yourself kind of girl. The times I have used our personal situation to fundraise (because I have done it), it was always for a charity, not for us personally. So suddenly turning our situation into a ‘fundraising appeal’ made me uncomfortable on a number of levels, not the least because it feels like something of a failure to not be able to provide all these things for Lil Z ourselves…
Enter two fantastic friends. The first, Hayley, is our personal trainer – and saver of our sanity. Both QB and I see her weekly and without our training sessions, I think we would both struggle to lift and carry Lil Z and also be grumpier, more miserable people. Exercise makes you feel better, even when it hurts. And 45 minutes of focusing on something other than the stresses of the day is the greatest kind of respite for us both.
Hayley has been on the Lil Z journey from the start – when QB signed me up to train with her as he solution for my post-natal depression. She let me bring 6-week old Lil Z to my training sessions, and although the thought of dragging a screaming baby into the city in my sleep-deprived state in order to work out seemed insane, it turned out to be just what I needed.
Although I no longer take Lil Z to my sessions – apart from the occasional visit – Hayley still keeps up to date on her developments. And although I’m sure both QB and I had been moaning about the fact we had to pay $6,500 for a special needs stroller for Lil Z, we were still surprised – and very touched – when Hayley decided to make her annual Christmas raffle a fundraiser for Lil Z. She got local businesses to donate some great prizes and the winning tickets were drawn at her Christmas party.
Although it then took AGES for Lil Z’s Otto Bock Kimba Neo to arrive, we are so grateful to Hayley – and everyone who bought a raffle ticket – for helping us with the cost of the stroller. And the good news is that it was worth the wait. She fits in it comfortably, it looks great, it is easy to push, and it has a detachable table, so she can use it at school. Not only do we use it for mobility, but it is also the best supportive seating she has – making it doubly useful.
The second fantastic friend is Ali, who I met over 6 years ago now in antenatal classes in London when we were both expecting our first girls. She’s always been a great source of support, even though I’ve since moved to a different continent…
Earlier this year, Ali decided to do a triathlon and to use the opportunity to fundraise for Lil Z. Again, I was both surprised and touched at her offer to help. And so, I suggested she fundraise to get Lil Z a Upsee. For those of you who don’t know what I’m talking about, an Upsee – a very simple harness-type device to help non-mobile children to walk – has recently taken the special needs world by storm.
I think it will be perfect for Lil Z as I really want to encourage her to engage more in the world around her. Ali wasn’t sure how much money she was going to be able to raise, but one of the great things about the Upsee is that it isn’t extortionately expensive, so I reasoned that if she didn’t raise the full amount, we could afford to pay the difference.
As it turned out, Ali raised far more money than what was required to purchase the Upsee and so was able to not only provide us with some new, cutting-edge equipment, but also make a very generous donation to Rett Syndrome research! Oh, and she rocked her triathlon (which wins her double respect!).
Again, fate wasn’t so kind to us, since the much-anticipated Upsee arrived on the day Lil Z fractured her leg for the third time. After six weeks in a cast, we’re now waiting until she begins treatment for fragile bones before we try out the Upsee. It is disappointing – not the least because I am desperately keen to make a video of Lil Z dancing in her Upsee to say thank you to all the people who generously sponsored Ali for her triathlon – but I’m sure it will be worth the wait.
Due to circumstances beyond my control, Lil Z’s medical emergencies and general life and laziness, I haven’t been able to say thank you to either of these fantastic people as thoroughly or as loudly as I wanted. But their efforts have been very much appreciated.
The cost of raising a child with special needs is huge, but with friends like these, it all feels possible.