reality check.. or not?
We had a meeting today with our new (and awesome) key worker for Chiara, as well as the team from Active Rehab looking at new Special Needs Equipment. These meeting’s are always tricky, it’s like a flash-forward into our future life with Chiara, or not? We really have no idea what fate has installed for us. We can keep working hard on various therapies, as well as Yoga, IAHP home program and prayer, but at the end of the day, we have no idea what lies ahead.
So I guess we need to prepare for all outcomes (but I’m not giving up on the Miracle!)
Chiara is getting heavy, it’s a different kind of weight than holding other 2 years olds. Her body weight can suddenly shift forward, backward, sideways at any moment, not to mention the amount of time that is needed to hold, carry and move her. We do this, day-in and day-out, so the repetition can put strain on our backs, this is already happening so like my previous post – prevention is better than cure!!!
Lifting her in and out of the car, the bath, various seating devices, the cot and up and down our front stairs (we brought the house long before Chiara was in our world) can be challenging. Though, we do have a pathway around the side to the backdoor, but pushing the 20kg wheelchair pram with a 10kg toddler up the incline isn’t the most practical, let alone through wintery months.
So we’ve spent the afternoon (in between 40+ masks) playing Tetris in the living room with all the special needs equipment. Trying to find away to fit everything in!?! We have a gas lift chair for feeding on wheels, a standing frame also on wheel’s and new bathing equipment on the way too. Did I mention we have 4 metre slide (incline floor) in the middle of lounge room? 😉 Also, this is the new standing frame they are suggesting here. As much as we try and limit the use of equipment, especially as it’s not part of our treatment protocol, reality is we still need these items for feeding and standing (weight bearing) time. Which reminds me we have to build some new equipment for the IAHP program…
Our lives have been re-arranged, just like the furniture in our home, to make way for this new blazing path, that is the special needs world. As much as I feel defeated when these visit’s occur (staring at the sea of steel contraptions to house my daughter in), there is a part of me that is so determined to ensure these items are for “temporary” use only, that I have not given up or given in, more so, blending it all in. I would give anything for the gift of mobility for my daughter, independent mobility, there’s not a day that goes by that Mauro and I’s hearts don’t pang for this. But the reality is, we need to manage Chiara and her disability now and also prepare for the future, and a different home (single level entry) with spaaaaaaace will be part of that future plan. Slowly, slowly when the time is right.
We also got a new car-seat today from Active Rehab, check it out. It costs $3,000, crazy huh! But due to her disability, it was a requirement for her to travel safely. It looks like a racing car seat!!! Go Chiara, perhaps a future F1 race car driver???!!!!! Her wheel-chair pram cost over $10,000, standing frame $2,400. Luckily the SWEP program and other funding bodies help make this available for us.
What does the future hold?
Well I hope a lot less of this kind of equipment and more independent mobility.