~~~
Yesterday I was emailing with a friend about this very topic when the physical therapist here walked in to talk with me about transportation options for Mira. (Because of Mira's severe scoliosis, risk for aspiration, and just overall rigidity, there are not many typical options for transporting her. Yes, they could make a custom seat that would conform to the shape of her back, but she really needs a side-lying position in order to keep her airways free.) The PT had seen her earlier in the week, and came back with two options. The second was by far the better one for her, both simpler to use, allowing more growth, and quicker to obtain. The only trick is that is not something that insurance would cover. The cost, however, is not outrageous - just over $150 with shipping, and at that, my mind snapped back to something I had seen when I opened mail at home the day before.
We had received a check from somebody that neither Matt nor I know (likely someone from my parents' church from looking at the address). The amount of the check was $200.
After receiving three separate individual gifts of $1000 each in the days before we left for Bulgaria (which, by the way, struck us, too, as an odd way to receive money. First of all, it's a LOT in one chunk. Secondly, our experience in the past has been that God provides when we need it, not before hand. Third, to receive three in rapid succession, all of the same amount sure sounded like code for "pay attention - I've got you covered,") the amount of $200 was notably...different. Again - pay attention. To so soon after have an expense that fits so nicely within that amount makes us feel so amply and completely provided for.
~~~
When I left home last night around 10pm to return to Mira at the hospital, I was leaving eight children in the sole care of my dear husband who, soon after I got home, went up to lie down in bed with his throw-up bucket next to him, telling me that if he didn't move, he didn't think he'd actually lose it. Runny noses are on the rise. The last thing I did before leaving for Mira was to shower and put on fresh clothes, and walk out the door without touching a thing. So far so good for me.
While this seems like a terrible time for Daddy to be alone caring for everyone, even in this we're seeing God's grace.
Reuben has for the last two or three years had a pretty predictable seizure rhythm. He'll be good for a week, and then will get pounded for a day, usually ending in one (sometimes two) doses of his Diastat. There are periods where you can almost set the clock. "About ten minutes and I expect Reuben's seizures for this week will start!" we'll say to each other.
The last time Reuben's had seizures was the Sunday/Monday that we were first in Bulgaria. That means he's getting close to two weeks seizure free right now! He's maybe done that two or three times a year over the last few years, but it is absolutely not typical, particularly not when you add the stresser of Mom not being home. (And the fact that both this past Monday and Tuesday when I went home to be with the kids for supper and bedtime and Matt was with Mira that I *forgot* his seizure meds! He's not only been seizure free for a longer than usual stretch, but been that way with two missed med doses in a row.)
Matt has also been blessed with very little critical work over the last two weeks. For months he's been booked with more than he likes to have on his schedule - always a deadline or a meeting or something that must be finished, every single day. Somehow (hmmm??) the last two weeks, and this past week in particular, almost all of those pressures have been lifted. He's worked 3.5 hours this month so far. And that's okay. Pretty incredible. Yes, being self-employed, there is no such thing as paid time off, so if he's not working, he's not getting paid, but we're okay right now, and God knows its more important right now for Daddy to have fewer demands on his time than to be getting a larger paycheck.
~~~
Matt just emailed me saying dinner just showed up. A neighbor's elderly relative passed away earlier this week and the funeral was today. There was food left over from the lunch, and they thought of us.
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About a year ago I took on the (knowingly impossible) task of keeping a notebook of every command I came across as I was reading through the Bible. I'm not going to say it's perfect or complete, but being attentive to this has made me aware of a few dominant themes. One of the most repeated commands that we are given is do not be afraid, do not worry about anything, have no fear. I've written about this a number of times recently, but it bears repeating.
If God is for us, who can be against us? - Romans 8:31
I will lift my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth.
- Psalm 121:1-2
has anyone suggested a naso pharangeal tube to keep her airway open? that way she could sit upright and see the world and people easier? They are used here in the UK - a soft tube going down a nostril - easily replaced and suctioned when needed
ReplyDeleteHer biggest problem now with sitting upright is the odd angle her head is at. If she sits upright, her head is looking up at the ceiling. The orthopedists are withholding judgement at the moment about how much of that will be able to be fixed with time/surgery/therapy and how much of it is permanent. But it's not something I'd heard of yet! I'm guessing I'm going to be learning all sorts of things I've never had reason to know. ;)
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