By the end of last week, we were on cloud nine. The week began with the threat of surgery and infection concerns and Mama was a nervous wreck, but then God reminded us who's really in charge, and we walked right back out of Duke with good news and no operations, and life was good.
And then came Monday. My sister and her family were faced with some devastating news, so we were doing our best to help them, and I had a house full of kiddos running around and playing and having a big time. Harper was right in the middle of it all, full of energy and decked out in her Princess Ana dress, when out of nowhere she started stumbling and walking into furniture and walls as if she couldn't see anything. She worked her way to the corner by herself, and went into a full seizure.
We were able to get her stripped down and laid out in a safe place, and the seizure lasted just over five minutes. At one point she stopped breathing, and we watched as her lips began to turn a bluish-purple color… it felt like everything was in slow motion. I had her rescue meds in hand, and the phone ready to dial 9-1-1, but she suddenly took a gasp of air and started to come out of it on her own.
In the week prior to this we had seen a couple of very small seizures, but this is the first major one she has had since starting her new medication at the high doses. And this is the first time in well over a year that she has had a seizure in the middle of the day while playing and being "normal." It is very rare for her to experience seizures while she's awake, so this one caught us completely off-guard.
That was enough to ruin Monday, but then we got one more blow before the day's end. Her CT scan report from last week was finalized and released to us. The good news is that they still consider everything to be stable. However, the report did state that she has a large porencephalic cyst in addition to the complex cystic system that was there and dealt with at birth, and while it is considered stable and has not yet impacted her ventricles or midline, it has started to slightly increase in size since September.
This is not alarming news to the neuro-team. They've told us from the very beginning that they can't predict what will happen, and these are the things they've been watching for all along and will continue to monitor. But it hit these parents hard this week. These are scary things. These are difficult things. We have cried and prayed and we know that her life is in God's hands and that His plans are ultimately for good, but it still hurts when we get smacked with painful realities.
I took Harper in for blood work yesterday, a task that gets harder every time as she knows now what it means and how it hurts. We are waiting for those results to see if these seizures could possibly be something as simple as a medication level being off before we take any kind of action. We hit a roadblock with getting her into Johns Hopkins for a second opinion, so we are praying over how to handle that. A lot of waiting this week.
One of my favorite quotes over the last few years is from John Piper: Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have. This has been a week of deep weeping. But we will wash it off and keep moving, and embrace the life we have, the gifts we've been given. And we will continue to trust God, firmly believing that no matter what, He is faithful and He is good.