Hiccups

You know, normally I like to remain a positive person. It helps me get through a lot of the pain. Some days, that’s just not possible. Today was one of those days. Rotten, stinking, good for nothing day. Phooey. 

Today, we went through another cluster. It started last night at around 9 pm, took us through the night and up to just half hour ago. It’s not over until we have at least a good 24 hours. Our seizure count is now up to 121. 

So many stressful things piling on top of each other right now. So many doubts, so many questions. Mix that up with a pile of frustration and you have a day like today. For example, why was I turned away by the Neurologist on call at Sick Kids today? I was almost hung up on. Is there something I should know about her case? Have they given up on her? Her medication is not working. That’s clear. She is taking three different anti-convulsant medications and none of them are doing a damned thing to stop her seizures. What does this mean? Why do I have to wait for another two weeks to get any sort of answers? It will undoubtedly be a short scheduled appointment, with very little window to address all of our concerns. But I should be happy right? Free social medicine provided by one of the best children’s hospitals in the world. Funny, I’m not feeling very happy. Nope. Not warm and fuzzy, not even content. I will have a lot to say at that meeting with the doctor who only briefly treated Pepper on her very first visit. 

On a separate note, we went yesterday to have a transitional visit with Pepper’s daycare. It went really well. She really is such a happy baby. She watched the other infants and smiled, and wanted to inspect all the toys set out before her. I was reassured after speaking to the staff about her condition, and well, it would have been perfect if she was able to make her follow up visit today. 

And speaking of transitions.. I will be joining the faceless, soul-less mass of commuters soon as I return to work in a couple of weeks. I am grateful to have employment, heartbroken to leave my sick little girl, and my stomach is in knots as the days count down. I hope they are ready for me, because I have been practising my smile in the mirror every day. Well, not the actual mirror, but the mini-me mirror I have been caring for since she was born. She always smiles back. Let’s hope those commuters do too.