Celebrate!

In case you were hoping for ground-breaking news, I should start by clearing the air. These little sweethearts are all celebrating Pepper’s birthday. Though we would like to report being seizure free, this celebration was for another milestone. Pepper turned two on Thanksgiving weekend. In this photo, she is surrounded by her loved ones. I can tell you truthfully, that she really loves these characters.  She loves them so much, she fell asleep halfway through her party and stayed that way for 4.5 hours. She missed her cake, missed Thanksgiving dinner, and well, let’s just say she didn’t exactly get to enjoy the parachute game or pin the jewel on the princess either. 

Turning two usually comes with the disclaimer, “oh dear, your little one has reached the terrible twos, watch out!”.  So far, the only thing terrible about Pepper’s twos is that she has had more frequent seizures. In fact, she spent a good 14 hours in emerg at Sick Kids last week as a result of a rapid cluster of three seizures within 15 minutes. My heart has never beat so fast in my life. A total of 11 seizures that day, and countless hours waiting for her sedative to wear off, I think I will need my mathematician husband to calculate how many years I have lost from my life that day. I am happy to say, that she was very well cared for in the hospital. She even had a visit from her wonderful neurologist and nurse practitioner. Oh, and it didn’t hurt that she also had a visit from a few Toronto Maple Leafs hockey players. Yes, that’s right, little miss had a visit from her favorite hockey heroes. Thanks guys, seeing her smile that day was the right medicine for me.  

Being the parent of a special needs child who also happens to have intractable epilepsy (seizures not controlled by medication, and in our case completely unpredictable), is a non-stop marathon. Emotions are high, stress is high, and the pulse is out of control. I don’t sleep and I keep a schedule of appointments, rituals and routine that leaves me little room for down time. This blog, my friends, is down time. My sanity. There are times when I wish Tron was real, and I could jump onto the grid to escape reality. But I’m not that into video games and look awful in a jumpsuit and neon lights, so maybe I’ll pass on that. Imagine though, that you yourself were that parent. Imagine that you, like me, have a network of friends and family all around you who are all starting families and learning all about parenting; with one subtle difference, they all have healthy children. There are days when I wish that Pepper would try climbing on the sofa, or would repeat a naughty word I have said. I wish that she would take a marker, open it up and color the walls, or put a pea in her nose. The fact is, Pepper is not able to do any of those things yet. Don’t get me wrong, I am not inviting catastrophe and chaos into my home any more so than we already experience daily, but it would be nice to sit down with friends and chuckle at all her misadventures.  At this point though, it’s all about balance. Baby steps. In her case, baby crawls. For every terrifying cluster of seizures, we have to work hard for her to reach another milestone. I recently have been reading a few blogs written by mothers who also have special needs children and they often use the term “inchstone”. Which I agree, our sweethearts are not cruising at the same speed and distance as other children. I like to think however, that progress is progress, and when a special needs child reaches what a normal healthy child calls a “milestone”, well, it seems to me that my little girl travelled a lot farther than a mile to get there. Perhaps, I shall now call them celebration-stones, because baby, we got there and it’s time to celebrate!!

Pepper’s daycare teachers reported to us in late September that she had crawled for the first time. Though, she is not on all fours exploring the house, she has indeed initiated a crawl. She’s stronger in her body and she is identifying the steps she needs to take to get herself moving. We’re getting there. Slowly but surely. Celebrate!