This journey with epilepsy, it is a vicious cycle.
I sometimes hesitate to label Harper as having epilepsy, although she certainly has earned the label. I struggle with labels, and her case is such a complicated one that there really is no one label that best describes her. I don’t know which issue she has that is greater than any of the others. She has the cysts. Those caused the hydrocephalus that led to brain compression and surgery and hemorrhaging and dead brain tissue. And then came the seizures, but the seizures so far have followed no distinguishable pattern, so we aren’t exactly sure where they are coming from or which of the underlying issues is causing them.
And then you have all of the repercussions of all of those things that affect daily living to some extent, and trying to discern what is what- is she just misbehaving? Is it sensory? Is it a seizure? Is she reacting to medications? Is there something else going on that we haven’t picked up on yet? Some days it feels like a little too much.
Harper had been doing quite well, and had made it several weeks with no seizure activity. It was fabulous.
But they came back.
And that’s where we are this week. She had two major seizures in the course of a week- those are the seizures that look like true seizures, with body convulsions and loss of consciousness. Fortunately, neither lasted longer than four minutes and she did breathe on her own through those, so we did not have to administer rescue meds or call an ambulance (blessings counted!).
However, since those, she’s been having some kind of spell that seems to be a different type of seizure, and these spells are coming daily, sometimes more than once a day. These spells involve stomach pain, loss of vision, and great fear for Harper… heart-wrenching to watch as a mom.
With these spells we’ve also had some behavioral issues… Mood swings, can’t sit still, agitated, aggressive, lots of screaming for no apparent reason… and then she’ll be just as happy and sweet as can be! It’s like riding a roller coaster all day- but with a house full of girls, we are used to that!
We’ve been consulting with her neuro at Duke, and have increased meds again. Once school gets out for everyone we’ll make a trip up there to see neurology and see if the increase is helping, and there is talk of having to be admitted for EEG monitoring again. If that is the case, we’ll have to make some decisions about doing it at Duke or going ahead with the study Johns Hopkins wanted to do.
I’m feeling a little worn this week, but tonight the Lord led me to Hebrews 12. I don’t typically read the Message version, but for some reason it popped up on my phone and I love the wording in those first few verses of the chapter: Do you see what this means- all these pioneers who blazed the way, all these veterans cheering us on? It means we’d better get on with it. Strip down, start running- and never quit! No extra spiritual fat, no parasitic sins. Keep your eyes on Jesus, who both began and finished this race we’re in. Study how he did it. Because he never lost sight of where he was headed- that exhilarating finish in and with God- he could put up with anything along the way…
What a charge- get on with it. Never quit. Keep your eyes on Jesus. He did it. He is my example of how to truck on. He is my reason to truck on. And He is the strength I need to truck on.
Let’s truck on, friends…