The state of the waters

Earlier this summer I was talking with my mom about what the previous six months had been like. We had been prepared for tough, and nothing was really harder than we had anticipated, but it's still been tough!

I described to her how the first three months of the year felt like all we we able to do was try with all we had in us to keep our heads above the water - treading water for all we were worth, and keeping the heads up - breathing, yes - but not much more than that.

After three months we realized that the waters were calming enough that we were really treading quite effectively - shoulders up and everything, and we were getting steady sustenance - food and water that you wouldn't be getting if the analogy were complete, so we had the energy to continue treading water...but realized that that's all we were doing: treading water out in the middle of the ocean with not a clue even which direction to go to find land.

And that summarized the next three months. Treading, treading, steadily treading, shoulders up, steady supply of food, treading, treading, treading. And that brought us to June. School was finally out, and all of the medical appointments that had been scheduled for "after school was out and the schedule is lighter" were completed, and as I talked with my mom about the analogy, I told her it finally felt like we were just starting to figure out which direction we had to start swimming to find land.

So we started slowly swimming in that direction, and oh, was that nice! Progress! Forward progress! Still out in the ocean, still nothing solid to set our feet on for a short rest, but the nourishment kept coming, and we kept swimming, swimming, knowing that soon we would catch our first glimpses of land...

And then came June 18th.

We keep track of all of Reuben's seizures in a chart (you can see a piece of it to the left). Each horizontal row is one day. Each blue or green square is a different type of seizure (roughly categorized. He has more than just two kinds, but they fall into two general categories). The top half of this clip is from early May until mid June, and is pretty much the pattern he's had for years. A day of bad seizures followed by roughly a week of no seizures. The pink on the far left is every time we've had to give him his rescue medication.

Do you see the change? That's June 18th. Reuben has had seizures every single day since June 18th. Some days only two or three. Some days as many as 24 (which is too many to fit on the chart). Some of the seizures are low-grade, but have lasted for hours. They are hitting at all times of day, many without warning. His sucking thumb (which often gets stuck in his mouth) is chewed up worse than it's ever been. We have been up with intense hourly seizures many nights, and many days have needed to give him almost constant hands-on supervision to keep him safe.

We are exhausted.

Physically, yes, but also with the realization that this is likely his new normal, and though we knew that his syndrome almost guaranteed progressive turns for the worse, we'd been hoping that these "best" years would last a little bit longer.

About a week and a half ago we introduced a new medication to Reuben's routine, and after five days, we noticed a slight reduction, averaging 3-5 per day instead of 10-15, which coincided with when I finally had enough in me to start this post. Since then, we've had three days in a row with eight seizures, and Reuben's thumb looks like this:

 And that's after seven days of continuous bandaging to prevent further injury and give it time to begin to heal. It looked worse a week ago.

As I'm treading away here, after having been sick with some viral something that still hasn't gone away after two full weeks and then some (hm, think I'm maybe short on the "sleep" side of things?) and trying to figure out how we're going to start home schooling on Monday (with two students chomping at the bit, and two dragging like stubborn mules), there are a few things I am able to hold onto.

1) God is so gracious to be very blunt with us, his children, who can often be rather dense. At one point earlier this year I wrote about the beautiful 22 day long seizure free stretch that Reuben had - the longest stretch he's had in years. As I looked back at the seizure log after the stretch ended, I noticed that what I had suspected was true. When you take into account the eight hour time difference between Minnesota and Bulgaria, Reuben's last seizure before that long stretch happened within 10 minutes of when we were in Pleven picking up Tsvetomira. That's hard to explain as a coincidence; much more probable is the quiet voice of God telling us that he does indeed have every little detail under his tight control.

1b) I love the part in Job where the angels are presenting themselves before God, and Satan, like all the others, does the same. There is incredible comfort in the fact that he can do nothing without the permission of God. Is he evil? Yes. Is he on an incredibly tight leash? Yes. If he had to toe the line with Job, he has to do the same with me, and with my son.

2) We watch Reuben on a night vision camera when he's in bed before we get up to his/our room for the night. Anytime he has a seizure, Matt or I run up there to help him ride it out, and to prevent him from trying to escape as it's ending; he seems to think if he can just run fast enough he can get away from the seizure. But he can't. And anyway, running when your sense of equilibrium is so off that you still can't sit upright isn't a good idea. As I'm up there body-holding him, I will often whisper to him that Mommy's there, and lately have been even more direct with him. "Jesus is right here with you, buddy. He is strong when you are weak. You and I are very weak, Reuben, but that lets us see how very much stronger God is. He has given you a hard life, but it is a good life because you know how much you need him. Someday Jesus is going to take you to be with him, and all of the pain is going to be gone, and you will get to spend the rest of forever rejoicing in him. He is with you right now; you're not going through this alone."

And I cry. I cry because it's easier to do when you're tired, but mostly because this world is full of so much pain, and this life is hard, and there is no hope in this life if we can not hold fast to the truth that this life is but a momentary breath in comparison to eternity.

Reuben had a seizure in my lap this afternoon, and Gloria was right there holding his hand and helping him out.

Oh, come, Lord Jesus!