This has been the week from hell.
It’s been an extremely unusual winter here in southern
Idaho. Usually, we get a few snowfalls per season, 1-4 inches each, and each
tends to melt away within a few days. If the kids are lucky, they get one snow
day.
This year, the snow started to fall well before Christmas
and it has been white ever since. There have been numerous storms and the
temperature has not risen to melt it away in between. Nampa simply is not
equipped to remove that amount of snow so widely and frequently, so even when
our main roads have been clear, many people are still stuck in their driveways
or neighborhoods because of the snow and ice there. Ice melt hasn’t been
available in stores for weeks. I’ve lost count of how many snow days. 9? So,
the kids had Christmas break, then as soon as they were “back” at school, they
only had 2 days of school in 2 weeks.
Frankly, I liked this forced slow down. Sure, it’s annoying
that our wheelchair van gets stuck so easily (the low rider gets high centered
pretty easily), but it’s been an unexpected blessing to have to rely on
neighbors and kind strangers. And it’s annoying that the first place snow seems
to get piled is in the wheelchair accessible spots, but with this much snow,
the parking lots don’t tend to be full anyhow. I liked the excuse to not have
to get dressed and get out. I’ve had excuses to call off of Keira’s doctors and
therapies that would not jeopardize our relationship with those caregivers. It’s
kind of felt like camping. We had nowhere to be and had to make the most of
what was right in front of us. We had to dig through the pantry and to the bottom
of the freezer and make do with what we had on hand, which tends to be a lot if
we think about it.
It tends to be a lot if we think about it…. A lot of friends
and family were sick and tired of being cooped up long before I was. They were
stir crazy and angry that they couldn’t get on with life as planned. Even last
week, during Sunday school, I pointed
out how this weather has been an opportunity that reminds us how little control
we really have over our lives. While warm and safe (most of us) in our
homes, we are being reminded that our lives are small and can be displaced by
something as insignificant (or so we usually think) as the weather.
How righteous of me.
The message in Sunday school that day was about a concept
called “holy fear.” The leader encouraged us each to think of fears we have,
big and small. She led us through some scripture regarding Old Testament kings
who did and did not lean on God in times of fear. My friend’s point, I think,
was to show us that the times when we feel worried or fearful are precisely the
times where we have opportunity to look beyond ourselves for help. The kings
who did it wrong were the ones who thought, “I’ve always been able to make it
work before, so I’ll do it myself.” She reminded us that our job as believers
is to walk right up to the precipice of our fear. We are not to stay in bed and
wait for someone else to do all the hard work. We are to march right into the
face of battle and there, at in the middle of hardest part, is where he will
ALWAYS meet us.
I had 3 main goals for the week. First, I was going to go to
the doctor on Monday. After taking antibiotics for a week to help a supposed
sinus infection that I’d had since Christmas, I wasn’t feeling any better and
needed to get checked out.
Second, I was going to spend all day Wednesday and Thursday
at the statehouse with my colleague from the Idaho CMV Advocacy Project. We’d
spent a Saturday at the CMV Advocacy Academy, worked together to write and put
together dozens of packets of materials, and had appointments to meet with
numerous legislators over those two days to talk about writing a bill to
provide CMV education in Idaho. Dare I say, I was actually starting to have fun
with this process?
Third, I was going to make some progress with figuring out
my debt with Social Security. A while back, Keira suddenly stopped getting
social security disability checks and we were told we were overpaid by $13,000
and needed to pay it back. That’s about 18 months’ worth of payments that they
had overpaid us, even though we had been updating them regularly with our
income information. Of course, the 10 pages of documentation that accompanied
the bill “explained” the debt, but if any of you have ever seen such a
statement you probably will agree when I say it may as well be written in Greek.
Or Martian. After calling the Social Security office, they told me that the
file could not be opened to answer my questions because the file had been
“terminated.” Meaning, I could not find out about why it had been terminated because it had been terminated. Fast
forward a couple of months, I have gone down several rabbit trails looking for
help and had finally come upon a disability rights group who seemed EAGER to
assist. After a phone interview, they said they would call within a week and
specify how, exactly they would be able to help.
Sunday night, Ronin was hit with a violent stomach bug. He
vomited most of the night. When he slept, I stayed awake, listening to him
breath, because I knew he was going to vomit again before he did and I cleaning
up bathroom is WAY easier than cleaning up the bed/bedroom/hallway. Monday I
took Ronin to the doctor because he was still feeling incredibly nauseous but
now was writhing in pain. After multiple
tests, they decided NOT to hospitalize him, and sent him home to rest.
Tuesday was spent nursing Ronin back to health. I
quarantined Keira in her room with her caregiver, determined to keep Keira from
catching this bug. It could kill her. I get a nap here and there. And I spend
too much time reading the news and looking at Facebook. I never cared about
politics. I figured that whomever was able to make it into such an office as
president of the United States, whether I agreed with his or her thinking or
not, we’d all be ok. I resent that I care about politics now. I don’t know that
everything will be ok. He might be a “good” businessman, but “the least of
these” are not good business.” My daughter is not good business. The poor, the
weak, the disenfranchised, the sick, the minorities, the abused…they are not
good business.
Tuesday afternoon I get a call from the boys’ school. Liam
is vomiting. I spend Tuesday night with Liam as he is awfully sick, unable to
sleep. “I’m here, at the precipice,” I thought.
Wednesday morning Ro still feels weak and yucky and Liam’s
stomach is just starting to settle. To leave them would mean that my mom would
have to care for all 3 kids, making it more likely that the germs would get to
Keira. Jeff, by no means, could take the day off. His Wednesday
responsibilities mean that if he took the day off, 4 other people would have to
as well.
I didn’t go to the statehouse. Instead, I spent all day
doing laundry and disinfecting the house. Surely, I thought, everyone will be
better by tomorrow and I can make the Thursday appointments at the capital.
Wrong. Liam was throwing up again in the night. I couldn’t leave. “I’m at the
precipice,” I thought. My colleague kept me in the loop. She did an amazing
job. She got an excellent response from legislators and a bill is already
underway. I just cried as she told me the good news. Not so much because of the
good news. More so because I wanted to be there, damn it. At least, I’ll go and meet with my colleague on Friday morning before she leaves town. I’ll get the full update, make a plan for what I need to do to continue forward progress, and potentially meet some of the people who have offered to sponsor our bill.
On Thursday morning, Keira’s therapist calls. She’s
vomiting. Dehydration is a major risk
for this kiddo. We huddle over her all day, releasing air through the G-tube
trying to prevent further vomit, administering pediatlyte by the milliliter.
Twice I consider taking to the ER.
First, because she vomits dark brown, which is highly unlike the color
of the clear liquids she’s been getting. Jeff disagrees because she’s acting
alright. Second, because she’s crying and sweating, out of sorts. Jeff
disagrees because at that point she’s tolerating fluids. We know from
experience that if we take her in she would definitely get admitted. We keep her
home. She gets through. I don’t make it to the capital on Friday.
Friday morning I open Thursday’s mail. One week later, I’ve
received a letter from the disability rights group. I’d expected a call, but
it’s a thick packet. This is promising. I read, “Unfortunately, the issue you
called about did not fall within this year’s case acceptance priority.”
That’s it. I’m so pissed off at this point, I don’t know
what to do with myself. I go for a drive. Why am I so upset? I ask myself? Why
is this so hard? It went so well at the statehouse. Why do I feel so crushed?
The answer? Because I am out of control. I want to think that I matter. That
most things are predictable and reasonable. This just sucks.
And I realize I’m eating my own words.
And then it’s Friday night and Jeff is finally home and I
sleep for nearly 18 hours.
And I realize that God was there. Is here. Nobody was
hospitalized. We are all resuming health. The CMV bill is making progress. And
the social security debacle isn’t finished yet. But it’s not what I
wanted.
Give me a just a few more hours to pout.
Then my goals for the week will be 1) Go to the doctor to check out this darned sinus infection, 2) proceed with what needs to be done to get the CMV bill through and 3) make some more phone calls to try to find a responsive person at the social security administration.
