His visible muscle loss in the calf of his left leg might not improve.
The cognitive function that he has lost might not return.
And we still do not know the cause.
We cannot predict his symptoms from day to day. Every time I see him I surreptitiously examine him to determine if his speech is more slurred, if his limp is more pronounced, if he is using his left arm or relying on his right. We used to have a pattern - it would get bad, suck for a few days, and then improve. We seem to be stuck at the suck stage with no end in sight.
He saw a Lyme Disease specialist this week who told him that this still could be Lyme Disease, even though that was ruled out three different times before. The results from his tests will come back in two weeks.
DH will see a NeuroOpthamolgist next week, and I'm optomistic (or at least I'm trying to be) that she will at least be able to help his double vision and headaches. At this point, even though he is not allowed to drive or teach, he still is trying to grade all of his seniors' research papers. We finally discovered that using a magnifying sheets allows him to read more than two without getting a severe headache, but his new cognitive difficulties are making it hard for him to focus and follow what the kids are writing, which obviously makes it harder to grade.
The fatigue seems to be one of the hardest symptoms for DH to deal with. He is not a napper - something that I never understood since I could take a nap at the drop of a hat, but that's a story for another day - but now after the smallest exertion he gets so tired that he has to take a nap for a couple hours, in addition to sleeping on average of ten hours each night.
Another direction we're going to try is seeing a Rheumotologist at the suggestion of the neuropsychiatrist from Johns Hopkins. She mentioned the possibility of some kind of auto-immune disease. That appointment is in a few weeks.
I am trying to stay focused on the present, but it's really tough not to think ahead. Will he be able to drive again? Is he going to be able to go back to work come August? Will he be able to handle working this summer? And if the answer to all this is no, will we be able to get by on my preschool teacher's salary? Will we be able to continue paying our mortgage, or will we have to sell our house and move somewhere smaller? Or, thinking smaller, will we be able to afford to pay for J to go to the camp I'm running this summer? We have enough in savings to cover the fact that he didn't really get a paycheck this time around, and the "sick bank" will kick in for his next paycheck (other teachers can donate sick days to cover the rest of the year), but we have no idea how long this is going to last. What if he has to be hospitalized again? We are so grateful to have medical insurance, but the cost of all the extras adds up quickly - parking, meals and drinks while visiting, tv and phone for him, ER copays, hotel rooms, gas, and food if we have to go back to Hopkins or the Mayo Clinic, the list goes on and on. And then there's the copays of the PT that he currently has to do three times a week.
It is really tough not just to crawl back into bed and pull the covers over my head. I indulged that desire a little on Thursday, begging DH to take over when he came home from whatever doctor's appointment he was at that afternoon. I went upstairs at FOUR, shut the door, and got in bed with a book. I read for half an hour and then went to sleep. For the night. I woke at midnight to pee, get a little bit to eat, read for a little bit more, and then go back to sleep again. Escapism at its best?
Obviously I can't do that every day. There are just so many balls to keep up in the air - and pretty soon I'm going to remember that I don't know how to juggle! It's not a matter of not liking all the different things going on right now. Some of the really important things are parts of my life that I absolutely love, like teaching. Spending time in the classroom each day forces me to be completely present, even if it is just for those three hours every day. The hugs, the smiles, the joy at hearing a new story or learning a new song, it just fills me with an energy. And to have my daughter across the hall from me, to be able to see her at lunch, or let her hang out in my office coloring in the afternoons if she has a bad day, it's a huge perk.
But there's the house upkeep, the bills and paperwork (which I swear multiplies and scatters around the house every time I turn my back like a warped version of Red Light Green Light), the groceries and meals, the laundry (oh, the laundry), the maintenance of both cars, the yard.
And did I mention I have two boys in first grade? We had conferences with both kids' teachers this week and it just ended up giving me such mommy guilt. We have been concerned that B might have ADD since before he entered Kindergarten. This is a kid who would lose focus while writing his own name so the first two letters looked okay and the rest of the letters end up scrawled across the page because he turned to look at what someone next to him was doing. His Kindergarten teacher didn't see it too much, but acknowledged that they move around a lot, ten minutes on the rug, fifteen minutes at the desk, and so on, so it might just not really be coming out too much. His first grade teacher saw it from the beginning but really wanted to try lots of different strategies before we started working with a doctor. She gave it her all. At our conference this week she looked at me and sighed, explaining, "I have been teaching for forty years and tried every trick I had in that forty-year-old bag of tricks, and nothing has worked. I truly believe this is not something he can control." The thing is, I knew this, I've known this for a while - I've been a teacher for a long time and know the symptoms - I've tried so many strategies at home without success. But have I pursued getting him seen by a specialist? No. Did I research how to make homework time for a child with ADD easier? No. Did I make more of an effort to work with his teacher to ensure success for B at school? No. Every year that I taught elementary school I would invariably have a student who reminded me of Pig Pen, not due to the child's personal hygine but because the child's possessions seemed to end up in almost a cloud around him or her, spilling from the desk/cubby/school bag at all times. This week I found out that B is that child in his class. His teacher had told me half way through the year that B is having so much trouble getting and staying organized that I have to do it for him. Did I? No. And here we are, at the end of first grade, and we have gone no further than filling out the basic parent/teacher rating scale to show that we all see the same concerns.
After B's conference we proceeded to A's IEP meeting. On the plus side, he is showing improvement. He no longer needs special warning about fire drills or to sit near a door for assemblies so he can make a quick escape if necessary. He is handling changes in his schedule without throwing himself to the floor and crying, though he does need someone to answer his persistant "Why" or he will keep asking. He definitely will need a PCA again next year, which is a personal care assistant that helps him stay on task, organize, and help him cope if he gets overwhelmed or upset. One of the biggest things that came out of this meeting is that his whole team feels that A would also benefit from ADD testing. All the teachers feel that both A and B are capable of doing so much more in school and that there is something getting in their way.
And why didn't I do something about this earlier?
Okay, don't start, I KNOW why. I know that DH's illness and unexpectedly ending up working full-time kind of took more attention that I anticipated, but still - these are my CHILDREN. How did I allow them to slip through the cracks like this? They needed more from me and I didn't give it to them. I'm a teacher and I didn't do more to help my children deal with this major learning obstacle. There is so much more I could have done at home with organization and structure, but I simply did not have it in me by the time I got home from work each day. I can't let that happen next year. Appointments with pediatric specialists take so long to get, but we received the paperwork and will fill it out and send it back tomorrow and call often to try to get in when someone cancels. Or maybe two people will cancel back to back so we can take both boys at the same time?!! Okay, now I'm just getting crazy.
So let's see, if I really was juggling, how many balls would I have up in the air right now? Hmmm...
- DH's health
- The school
- Our finances
- My own health (really have to start focusing on that more!)
- Summer work (two different camps)
- All the other stuff I'm not thinking of right this second
Anyone out there actually know HOW to juggle? Maybe that would help. A little. Maybe?