An Update

Here we are, nearly four months out.

Francisco is in many ways doing well--and a lot better, obviously, than that horrible day in August. Most people wouldn't notice anything different when talking with him, and he can read and work some. We had the procedure to close the hole in his heart; he excelled beyond what speech therapists can help him with, so we're basically on our own now.

But it perpetually drives me nuts--people seem to want a narrative of "back to normal" and "totally better" that isn't anywhere near our reality, which is totally still in the trenches (though of course, always, it could be worse). Francisco needs a lot of sleep now, which is difficult to get between his pre-existing insomnia and the new baby. He has debilitating fatigue for much of the day--this is different from sleepiness, but rather he gets mentally worn out easily, after a couple hours of work or engagement, and then can't do much more. That means that if I want to pass the baby off to him for a half an hour in the evening, that may or may not be possible (likely not).

He has remaining little bits of aphasia that we don't quite know what to do about. He writes at such a high level that most speech therapists aren't able to help with this. (And I don't really get why there aren't speech therapists who can help you deal with high-level aphasia.) He had been meeting with an old English teacher of mine to help with his writing, which was perfect, but now we're leaving PA.

It is really amazing generally the lack of help that hospitals and medical professionals offer at really letting you know what you can expect going forward or supporting you in that journey. Once you're out of the hospital, you're not really their problem anymore, except for a few follow-ups. No one tells us much about this fatigue and how long it may or may not last and how we should establish a new normal. We're part of a couple of stroke facebook groups, which offer good information and support, and also bring with them stressful information (like you can be fatigued for 10 years after a stroke, or forever).

Communication, ever complicated in marriage even before a stroke, is even more complicated after. It takes more patience and time--and when you're trying to communicate quickly in a stressful situation, well, things just aren't ideal. I told Hannah that it is, in some ways, like the first year of marriage again--our abilities are different from what they were before and the division of labor, the way we work together, and our methods of communication all need to be rehealed. It is exhausting and emotional. And throw the baby in the mix and there's one tired mama with nothing more to give, whose temper can be tripped in an instant. Not my finest self.

So you can see why I'm irritable when people imply that everything for us is fine now. It is really a long haul, and my return to work in January is a new challenge arising. I get very anxious thinking about the future--my therapist always reminds me to take one day at a time, which makes so much sense. However, when you actually have to think and plan for the future, it really is hard to do that preparation dispassionately.


An Update: I wrote this a week ago, so I could sit on it. In the meantime, I encountered the most upsetting response to our situation that I could have ever imagined: A woman who was a family friend from my childhood, but who I have spoken to maybe half a dozen times in my life, and none of those in the last 15 years, told me that I am privileged to go through what our family is going through because I can be closer to God. "Count it all joy," she told me, quoting the Bible at me. She continued speaking for several minutes along the same lines--I couldn't really hear it or understand her because I was just thinking over and over in my mind, "Is this really happening? Is this woman really saying this to me?" But I had to sit there with a pained smile and nod before I could run away from her to shake and cry. I cried on and off for the rest of the day.

I have a lot to say about this. What happened to my husband was bad. Strokes will not happen in heaven. It is part of my faith that God takes all the bad stuff that we face on earth and makes them into something good. We cannot predict what this good will look like--and we do know it involves a lot of pain. However, this does not make the unequivocally bad stuff that we face good. It does not make us privileged to face it.* And no one, but most especially someone I don't know at all, should be telling me how to think or feel about what we're going through. People should be asking questions and listening and lending a sympathetic ear. And if they want to tell me about their experience going through a bad situation, I'll listen. But quoting Bible verses at me! I don't remember any details about the "friends" who came to "comfort" Job when he was going through dark times, but I feel like this woman just about captured that.

I'm a generally secure person and other people's opinions don't ruffle me much, but this woman did more than anyone has before. I've thought many uncharitable things about her, but perhaps I can say this in an illustrative rather than vindictive way. Perhaps I should have suggested that she and I could pray together that her husband would have significant brain damage so she could be as close to God as I get to be.

I'm sure that all of this is made worse by the coming of Christmas. Advent is all about longing for Christ's birth, and then he comes and brings joy. And I don't know what to do with that all this year, when our trials will very much be continuing through the Christmas season.


*It would be better that sin had not entered the world. But it has, and so bad stuff happens. But it would be better if sin had not entered the world.