Looking Up

One of my favourite people to quote is Oscar Wilde. Fittingly, my favourite quote from Oscar Wilde is this:

                        We are all in the gutter, but some of us are looking at the stars.

From time to time, readers of this blog, or friends of mine will say to me, I’m amazed at your strength and how you can remain a positive person despite what you are going through. I do consider it a strength to be able to remain positive through such an awful situation, but I am reminded everyday by Pepper’s smile, why it is important to do so. So many little reasons to be positive, to be grateful and to project out into this world, the joy that I wish would multiply and reach beyond our inner circle. Children teach us everyday how to be joyful. Children, particularly small ones, have no stress. Pepper, will have a cluster of seizures, followed by a fever and a nasty cough. She will then turn around and smile at you without a single complaint. Her big brother gave me the best present the other night. I put him in the shower before bedtime and waited for a few minutes before I retrieved him for his pj’s and nightly routine. That sweet boy was singing The Rainbow Song at the top of his lungs in the shower. He’s 3 and 1/2. Not a care in the world, and I love him so. 

Having said all that, we have had a terrible couple of weeks. Dad promises me he’ll post something to the blog soon, and I see that he has a draft waiting in the wings, but I’ll fill you in on some of the details, while he ponders. Pepper has had another few days of clusters. She had 7 seizures on one day, two days rest, then 5 seizures, then 3. Our seizure count stands as of this morning at approximately 182. There is no doubt we will reach 200 by the year’s end.

Recently, Pepper has also come down with some sort of cold/virus. She has a nasty cough and has been having trouble sleeping. We’ve even had to administer her rescue medication on advice from Sick Kids, to try to stop her cluster. It was touch and go whether or not we would be going back to the hospital to have them try to stop her cluster. So you see, it hasn’t been all sunshine and roses here. We’ve been handed more seizures, and clusters, and medication failures. Pepper’s seizures have also changed slightly. She now has “petit mal” seizures, or staring spells that happen just prior to her “grand mal” or convulsive type seizures. Those are particularly vexing, as they are silent and happen without any warning. Most remarkable though is the very slight smile on Pepper’s angelic little face when she is having one. Pepper’s gift of joy. She looks peaceful as she is looking up at the stars.