As I packed our bags for a routine appointment at the spinal clinic I was thinking to myself it looked more like we were packing for a weekend break rather than an hours appointment. There was a change of clothes, shorts & t-shirt for the required x-rays, wipes & changing bag, a feeding pump with extra milk in case of any emergencies, a spare button just in case the situation arose where the one in place fell out, a bag of toys for the waiting times, a bag of snacks for Zac & a bigger bag of snacks for me & Craig, the “folder” containing all the medical notes & contacts, the massive push chair with jumbo wheels & finally the blue badge so we could get parked without having to circle the car park 50 times!!
We check in to the hospital (yes when you’re a regular you check in via a touch screen that uploads all your details) & the screen tells us to attend “height & weights” clinic first. I sighed as I saw the screen thinking “here we go again”
nurse: Zac we’ll just sit you up on the scales
me: Zac’s condition means he can’t actually sit by himself so he can’t get weighed on the normal scales
I have to go through this every time we visit the hospital! We wait a bit & they decide they don’t really need a weight so we now make our way to the x-ray department. We get to x-ray put on protective jackets, zac’s gowned up & shouting “cheese” for his special pictures while the machine flashes across his little body. I catch a glimpse of the image as it flashes up – i’m no expert on the spine but even I could see from the quick flash that Zac’s spine did not look like a spine should…….
So back to the spinal consultant who examines the images & says “time for a spinal jacket”. I think to myself “yeah why not we have a growing list of medical supplies & equipment let’s add a jacket to the mix”. Off we go to yet another clinic to get measurements & a spinal jacket will be made. We tell Zac it’s an adventure, a part of the hospital we hadn’t discovered yet. The orthotist explained the process & all I could see was the calendar at home on my kitchen wall filling up with more appointments – appointments to fit into our already busy schedule – physio, respiratory clinics, health visits, neuro clinics, injection days, occupational therapy & now spinal jacket clinic!!
In all seriousness my heart was now breaking at the thought of my baby wearing a brace for most of the day just to keep his spine straight, my heart was breaking at him having to face yet another challenge. And no matter how busy the calender, I knew we would attend each appointment with a smile, telling our son his new jacket will be a piece of superhero armour, giving him the super power of a straighter spine, it will be another part of his scaffolding that makes him a warrior. It’s just another part of our “different kind of normal”.
So we left the hospital a few hours later with all our bags & equipment plus “a new spinal jacket & a whole lot more appointments”.