Some days just don’t go the way you think they will. Sometimes all it takes is one little thing to throw you off your game, and then when other little things also go awry, your day has suddenly snowballed into a tough day. Yesterday was like that for me.
It all started when Charlotte came upstairs crying at 5:30am because her teddy bear had gotten tangled in her sheets and she couldn’t find it. Sigh. Of course, there was no going back to sleep for me after that, so I was definitely feeling a bit rough when I was having my breakfast. It was soon time to get the girls ready for our morning walk to school. I got Penelope all bundled up in her snowsuit as I have been doing, since it’s been so cold in the mornings lately, and we headed out the door…to a nice, warm morning. Penelope was definitely overdressed. Oops.
After dropping Charlotte off at school, Penelope and I headed over to Home Depot to pick up some more caulking to patch up a spot in the tub that Mark had missed when he was redoing it on Monday evening. Like the good-hearted, helpful person I am, I volunteered to do it for him. I had seen my dad doing it growing up, and I had seen it done on home reno shows, and to be honest, I kind of thought it looked like fun. So I got the caulking and went home and set about my task. I cut off the top of dispenser and pierced the inner foil seal as per the instructions and started squeezing. And it was much, MUCH harder than I had anticipated. I had thought it would be like squeezing icing out of an icing bag. It was not. I was squeezing as hard as I could and nothing was coming out, until the end popped off and I got caulking all over my hands. There was nothing in the instructions about pushing it forward from the movable bottom. Anyhow, once I realized that was how to get the caulking out, I was able to get enough out to cover up the little spot that needed to be done (when I told Mark how hard it was, he said, “You mean you didn’t use the caulking gun in my tool closet?” Um, NO, I didn’t because you never uttered a word to me about a caulking gun! Argh!). (Mark’s note: Since she was so enthusiastic about caulking, I assumed she knew about the gun!). And then I had to figure out how to get all this goopy crap off my hands. And it needed to be done quickly, because of course Penelope chose that moment to have a meltdown. So I was frantically washing my hands, but the soap wouldn’t absorb because the caulking was acting as a barrier, so I had to get a scouring pad and scrub it off my hands. Yeah, not fun.
Anyhow, I got that crisis resolved, and then prepared for a busy afternoon- Penelope had two appointments at Bloorview to attend. The first was at the Feeding Clinic, which went fairly well. Penelope is certainly interested in food- I think we are past the oral aversion stage with her- but she still has a lot of trouble coordinating her swallowing. This wasn’t news to me. She just needs more time to get it figured out.
Next up was the Orthotics Clinic. This did not go as I expected. I truly thought that because she isn’t standing or walking yet, they would say that orthotics were not necessary at this point in time; however, they felt that she would really benefit from a pair of ankle foot orthotics (AFOs). The AFO would give her support and stability as she (hopefully) learns to stand and walk. It will also help to preserve her range of motion- her chromosome deletion puts her at risk for muscle spasticity. I mean, I know it’s just orthotics, it’s not the end of the world, but I was caught off-guard by this. And the reality is, it’s probably not going to stop at orthotics. There is a good chance she will need other supportive devices to help with her mobility, and I hate thinking about the struggles she may face in the not-so-distant future.
So, despite be able to select a cute Peppa Pig pattern for her AFOs, I left Bloorview feeling a bit unsettled. And then, as luck would have it, the Don Valley Parkway (a major highway that commuters and residents use to get in and out of the city) was closed in both directions due to a truck rollover, and so all the overflow traffic was now filling up my route home. It took me an hour and a half to drive us home.
Once we finally arrived at our house, things were a blur of getting Penelope fed and bathed, lunches made for today, dinner ready, etc. But I was keeping my eye on the prize- going out to the gym once Mark got home. Unfortunately, he was home later than usual, but I went anyway. And of course, I got stuck in traffic again, this time due to a stalled streetcar. At this point, I really just wanted to turn around, buy a pound of chocolate and go home and wallow. But I didn’t. I forged on, and I sweated through my cardio workout, and pushed myself with my weight training. I will admit to being distracted by a guy wearing a purple Epilepsy Foundation T-shirt, which triggered my worries about the strong possibility that Penelope will develop epilepsy, but I stayed the course. I can’t say that the workout completely wiped away my bad day, but it lessened the weight of it a bit.
Even after a pretty good night’s sleep, I’m still feeling a bit bogged down with these worries- about her mobility, about the possibility of seizures, and about what her future may hold. Part of that is because Penelope is going for a speech assessment this morning, and since she still doesn’t have any consonants, I don’t think it will be a particularly reassuring visit. I don’t know if these feelings are warranted- as in, was being faced with these issues a reality check for me or is this just a bout of pessimism? The only way to know is to let time pass and see what happens. She could very well surprise us and walk without the aid of an assistive device and she could beat the odds and the epilepsy may never come to fruition. I don’t know what’s going to happen. I can deal a lot better with all of this if I just stay focused on the present. And I’m sure that in a couple days, especially with the distraction of Halloween, I will be back to doing just that. But maybe, for today, I just need to give myself permission to worry a little bit, and then put it behind me.