May 1997 – In May of 1997, one of the most vivid memories was created in my mind. Since the Canada Revenue department had been generous with an income tax refund, we decided to take Amanda on her first trip to Disney World. This began an extremely LONG love affair with the Mouse House. I thought nothing could top the absolute look of wonder on Amanda’s face as we wheeled her stroller on to Main Street in the Magic Kingdom. However, NOTHING tops the look on her face when she first saw Mickey Mouse! We pointed out where Mickey was stationed and told her we were going to get in line to get his picture and autograph. Well, Amanda had other ideas in mind! She pulled herself out of her stroller and ran, literally pushing people aside, until she was standing in front of him. We have a picture of her with Mickey and you can see the knee on her left leg is horribly swollen and she can’t straighten it. But the brightest star in the sky couldn’t match the absolute glow of pleasure on her face as she stands at Mickey’s side! I remember thinking that this TRULY is the most magical place on the earth – a place where a small child in obvious and incredible pain can still run to see Mickey Mouse!
June 1997 – The day for injections arrived. We had to arrive at HSC very early because her injections would happen around 10 a.m. so we stayed overnight in Toronto to make it easier – morning commute to Toronto is hellish!! Well, try explaining to an extremely hungry 20 month old why she can’t eat and why all these scary people are sticking things on her and pocking and prodding. That day I had to do one of the hardest things I’ve ever had to do in my life – try to hold my screaming daughter while they sedated her for her injections. They do what they call “conscious sedation” – she isn’t completely out but out enough that she isn’t aware of what’s going on. The lights are on but no one’s home, if you know what I mean! I held her tight against my chest and sung one of her favourite songs – Part of Your World from Little Mermaid. They were finally able to get the mask over her struggling face enough that she fell asleep in my arms. I could hardly see my feet as I walked from the procedure room – tears were streaming down my face and blurring my vision. I knew they weren’t going to hurt her and they were doing what needed to be done – but the “Mom” part of your brain has a very hard time reconciling that thought with the vision of a struggling child. However, the “Mom” part of your brain also knows your child is in pain and you will do whatever is necessary to end that pain.
After the injections, they brought her into the ward where we were waiting for her. She looked so small and helpless and fragile when I saw her! I learned one of the most amazing things that day – children have an “ON” button! When the nurse came in to check on her, she firmly pressed her thumb in a spot underneath Amanda’s jaw near her right ear and, lo and behold, Amanda woke up!! Tim and I expressed our admiration for finding the “ON” button but begged her to show us the “OFF” button!! Unfortunately, waking Amanda up also meant turning on the vomit machine! The anaesthetic can make kids dreadfully ill and Amanda was no exception. They gave her some Gravol in her I.V. line but it didn’t help. We were stuck waiting at the hospital for a couple of hours before they gave her the OK to leave – after she was able to take and keep down some fluids.
I thought explaining to an extremely hungry 20 month old why she couldn’t eat was difficulty. Try explaining to that same 20 month old why she isn’t able to walk for 48 hours!! Our rheumatologist has a very strict post-injection policy – no weight bearing for 48 hours. When they do injections, they’re using needles that have a fairly large diameter – as needles go. So if Amanda were to put any weight on her knee before the 48 hours is up, she would run the risk of having the steroids leak through the holes left by the needles. So we stocked up on movies, ice cream, and activities that could make an almost-2 yr old forget that she was stuck on her butt for two days! She kept trying to get up to run – it dawned on me that this was the first time since she’d been diagnosed that she was pain free! Of course, she wanted to try out her “new legs”! Fortunately we got through the weekend without the use of any shackles!