I know I’m busy and *might* do too much at times, but I can’t believe that I haven’t blogged since March. I even clicked on the link a second time thinking my computer went to a specific link instead of the most recent post. Maybe just maybe it’s because I teach full-time, had two weddings, four other sessions and am 8-9 months pregnant? Just maybe.
So needless to say, much blogging to catch up on. Starting with my nephew. He turns six tomorrow. My sister has started a tradition where I take her kid’s pictures for about 10 minutes on the day of their birthday party. We’ve been doing it for 2-3 birthday’s now and it has produced some really great images of who they really are.
Josh has had a rough couple of months. He had been having headaches and his dr. decided it was time for an MRI to see if they could get to the bottom of it. I don’t know why, but something told me to call my sister that day on my way home. My sister answered, something sounded off in her voice and then she told me the doctor had called them before they even got home from the test. My heart sank. As the mom of a child with a chronic disease, I’ve received that phone call, even living only two blocks from the office. I know that sinking feeling that something is really wrong. It’s not a call anyone should ever get: speed in the medical field typically only means unpleasant things. It’s a feeling you hope that no other person on the Earth after you ever has to endure. After a couple of weeks of waiting and trying to get into a specialist, they finally found out that the MRI showed a Cortical Dysplasia. In short a Cortical Dysplasia is a malformation of the cortex of the brain which can lead to pediatric epilepsy conditions. A word we all know, epilepsy. The picture in our minds is not of headaches or a child blindly staring off into the distance for seconds or minutes. But the reality is, epilepsy can be just that, at least in the beginning.
So over the last three months their family has had to endure many new hardships; accepting a lifetime of medication (and finding the correct dose safely), learning to deal with regular blood draws, learning what seizures really look like and signs that they happened during sleep, becoming experts on strange medical acronyms and learning what numbers make you scared and what numbers can make you feel so much better. I always thought hearing my then 7 year-old nephew tell my 8 year-old nephew that “things get better with time,” concerning divorce, was just one of the saddest moments of my life, until I was setting up Skype dates for my own child with my 5 year-old nephew so they could talk about having routine blood draws and how to mentally deal with it.
Life is not fair, I know I’ve said it before, but seriously, it can still dole out gut punches pretty regularly. Seeing a medicated version of your child is simply awful, especially when you then have to feel the guilt associated with knowing the medicine is necessary, but you still hate it. So if you have an extra minute to send some positive thoughts/prayers his way, I know they’d be greatly appreciated. Considering everything I was so glad to be able to still have our regular tradition of ten minutes of photos…and hopefully we can all take the advice of a 7 year-old, wise beyond his years, and instead of being sad, just listen, “things get better with time.”