our "lucky" day

Today has been one of those sweet, validating homeschool days. The weather is heavenly. The kids are getting along, or at least were at the time of this post. Studies have been flowing smoothly. Including Trevor doing a terrific job reading a new book! I can't helping thinking "I taught him that!" as I noticed his improved fluency. He adores the Billy and Blaze series, which is helpful. Pretzels, however, are distracting. 

We were having such a lovely day that I couldn't resist catching another video, this time of our fine motor rock stacking workbox. I try to think of tasks that are practical and meaningful. Rock stacking is a thing in our neck of the woods. My hope is that working on this at home will allow him to participate with friends in a meaningful activity when we're out and about. He loves this task and was doing great. Until about the 7 second timecode, at which point you can hear him intake his breath, see him pause from his task, his right arm elevates stiffly, and then he turns towards me for a hug. As he turns towards me, you can note the asymmetrical appearance of his face. What you don't see, because the camera is sandwiched between the two of us, is his body pulsing. You can't hear his labored breathing because my attempts at comforting him drown it out. If you pause the video at about the 20 second timecode you'll see his right eye is deviated inward, crossing, even as the seizure is relenting.  

This was a mild version of the seizures we're seeing, in varying degrees of intensity, at least three times a day, often more. For months, I've been trying to catch one of film. Every seizure parent knows that video evidence is often paramount. Today was our "lucky" day. Sigh. 

It's incredibly vulnerable to share this with the world...with the medical professionals even. I've had a neurologist suggest I take him to an ophthalmologist to rule out lazy eye when I said his right eye is deviating. When his Infantile Spasms relapsed, a chief of pediatric neurology told me it was just a tic but he'd go ahead and order an EEG to make my heart feel better. The EEG confirmed hypsarrhythmia, a marker of one of the most catastrophic forms of epilepsy, had returned. My heart did not feel better, she shattered. When learning that Trevor's epilepsy has relapsed again I've been asked, "But what kind of seizure?" The implication is that one seizure type is better than another. This implication is false. And hurtful. 

There is no such thing as a good seizure.

Yet, it's true, I am thankful this one was mild. I am thankful he was able to carry on with his day and not left recovering on the couch. The mild ones are certainly easier on my heart.