Give
me a problem. Or not even a problem, just a project. I’ll do some research and find out more about
it…general and in-depth knowledge, options, strategies, expert opinions…I will
try to connect with others who have experience with this problem or project, if
applicable. Then, I’ll make a plan. Depending on the level of complexity, this
might be a checklist, a flow chart concept-- if this/then that, or a multi-phase
plan. Then, I’ll strap on my running
shoes, so to speak, and get to work.
Consistent hacking away is key.
That’s how you eat an elephant, right?
(Not that we’d want to eat an elephant, of course! Noble creatures. Man, I miss the elephants…wouldn’t it be
great to go to the zoo?! Wouldn’t it be great to go anywhere?!)
This
being my personality, I’ve had a life journey learning to function within big
problems that I can do next to nothing about.
Like,
this one. Nearly 12 years ago, my
youngest child, Elijah, was born. He was
an angel baby, and turned his little head to the sound of my voice when the
nurse took him across the room to weigh him shortly after his birth. I mean, how precious is that? Not just precious, but healthy, alert, and strong. Before we checked out of the hospital, I did
ask the nurse to check his breathing one more time. I was concerned maybe he still had a little
liquid in his lungs, as I noticed a slight little something, off, in his
breathing sometimes. His daddy said he
was a newborn, and just figuring out to breathe, but I wasn’t satisfied with
that concept. But the nurse listened to
his lungs and said they were perfect.
As
it turned out, she was right, his lungs were perfect. But his little intermittent breathing problem
got significantly worse. In six weeks’
time, it could be heard outside the heavy door of his hospital room. His health and strength would be needed,
every iota of it, as well as his indomitable infant spirit. Because we found out when he was six weeks
old that his odd breathing issue, that made him breathe with a remarkably loud
stridor (but only sometimes) was due to the fact he had a large tumor, the size
of a man’s fist, in his neck and chest.
His trachea was squished like a nearly-flat straw, and it took all that
amazing baby strength he had to push air through it.
But,
here’s the deal. It didn’t primarily
take strength for him to
breathe. When the tumor was at its
largest, before his first three surgeries (scope to help determine airway problem,
biopsy to diagnose what type of cancer he had, and central line placement in
his chest) so that he could start the correct chemo protocol to shrink the
tumor, which did (thank God) shrink the tumor, he didn’t breathe with that
terrible loud stridor most of the time.
Often, if you didn’t know better or put a stethoscope to his chest, you
wouldn’t think there was a thing wrong with him. He had this position he would take. He would stretch his neck up and off to the
left side (the tumor was on the right) and find the sweet spot, and when he
breathed gently, not forcing too much air through at once, he could breathe
well. But in other positions, or when he
was super happy and excited, he would breathe harder and deeper and the audible
(and heartbreaking) strain would be heard.
Loudly. Like through a heavy
hospital door loudly. Then, we were glad
he was strong and healthy, with no congestion or any kind of blockage to put
any additional strain on his breathing.
In
the days before we heard the word “neuroblastoma cancer”, when the pediatrician
(reasonably) had us biding our time with a lower level explanation, I used to
put my hand on him, as he lay in his little bedside bassinet, and just pray
that he’d keep breathing, just keep
breathing, through the night.
Sometimes,
strain begets more strain. Struggle
harder, and the problem is worse. Elijah
would show me this again, three or so years later. He’d had his cancer journeys, two of them,
the second culminating when he was two and half years old with a resection
surgery of an “unresectable” tumor. Six
or so months later, not caught up on immunizations due to chemo and a
subsequently weakened immune system, he got pertussis, also known as whooping
cough. I had learned when a good
friend’s daughter had this several years prior why it is called
“whooping”. The cough is severe, the
most severe cough I’ve ever heard. All
the air is coughed out of the lungs, and the afflicted cougher will then often
then try to take a huge breath, which will create a “whoop” sound as the airway
is strained to try to pull in as much air as possible. This strain in turn leads to another huge
cough, and a cycle of coughing fit is suffered.
But everyone with whooping cough doesn’t “whoop”. Elijah was not a whooper. (I love that sentence!) No, he’d cough his little lungs empty, and
just..not..breathe. He would hold his
breath, for long enough for all of us (three older sibs, mom and dad) to say,
“Breathe, Elijah, breathe!!!” Then,
after he’d held his breath for a long moment, he would gently take in a long,
slow breath. No whoop. No strain. No
coughing cycle.
This
kid had learned something about how to breathe under pressure. But, oh, has it been a hard lesson in grace
for me. There are times when you cannot
control the constraints you are under. You can’t work hard enough or smart
enough to fix the problem. If you put
too much pressure on the situation, if you expect too much, it will only
degrade. How can you live within
it? Remember my MO for problems? Well, it helped me be an adequate cancer
mom. I did my research; I understood all
I could about his type of cancer and the details of his treatment. I kept track of all his appointments,
joyfully checked off each chemo round, made sure the protocol was followed per
the schedule, and checked every label on every chemo bag to make sure he was
getting what he was supposed to. I
schooled the older kids on sanitizing and hand washing and not breathing in
baby brother’s face if they had a snotty nose.
I eventually found a network of neuroblastoma parents that directed me
to the world class (one of a kind) surgeon who WAS able to remove the tumor
from my toddler’s neck, even though it was wrapped around his carotid artery
and as the docs at home liked to put it “there’s a lot of valuable real estate
in there”. (A phrase which always
annoyed me; there wasn’t an expensive condo in my baby son’s neck, there was a
large malignant tumor. Just say it.)
I
could do all that, and I did, and it helped.
But despite all my organization, research, and discipline, this was a
problem I couldn’t solve. The outcome
was completely out of my hands. I had to
live for months, for a few years, in this place of strain. If I thought about it too hard, I might feel
I couldn’t breathe. At times, especially
in the many days waiting for the phone calls to tell me if the MRI showed the
poison was working or not, I felt this sick quiet panic—cancer parents call it
scanxiety. I was under the grip of a
menace so much bigger than me. It was
impersonal. It didn’t care. Cancer would do what cancer would do. It might respond well to the chemo cocktail
(which at the same time might be trashing my son’s organs, taking his hearing, and
making him susceptible to dying from a garden variety virus) which it did the
first time. Or again, later, it might
just sit there and do nothing despite being hit with the “red killer” chemo and
all the rest of the frontline treatment.
I lived with the sick quiet panic.
I functioned through it.
I
had this image. You see, then and since
people have said “oh, you’re so amazing, you lived with that with such faith
and what a great story of deliverance” etc., etc. But that’s not where I lived, and I’m not
amazing. I have my child, and since his
cancer time he has been the picture of health.
I am the lucky one. We got the
blessing. I walked along the precipice,
along the jagged cliff side, carrying my boy.
Sometimes, all it would have taken was a good breeze to push us over,
him to death and me to that drowning no-longer-quiet panic. I saw the view, I got the vertigo, but I
didn’t fall, and neither did he. We are
the lucky ones. But of this I am proud:
I learned to walk along the cliff side and breathe, breathe shallow. Breathe gently, and walk with grace. I learned not to hold too tightly to him and
his older brothers and sister. I learned
to hold those I love with grace; to love with an open hand.
We
are always being told to breathe deeply. You’ve probably never been told to breathe
shallow. But I believe there is a time
for it. Right now, we are all caught in
an uncontrollable situation that is changing and limiting our lives in myriad
ways. Millions have lost their jobs,
thousands have, and many thousands more, will lose their lives. Loved ones are dying alone in crowded
hospital wards. We see the limit of our
power as “the most powerful nation on earth” that cannot supply its healthcare
workers with basic low-tech PPE. Some
feel helpless, angry at a foolish and futile government that should have done a
better job. And then, underneath all the
noise of policy debate and what’s going on in Italy and Spain and China, we
need to get groceries. And it’s
dangerous, if not (we hope) to us, then to our dear friends and family who are
in the high risk group. I’m sure it’s a
terrible time for all who struggle in ordinary situations with anxiety, PTSD,
and the like. And I want to tell you
something.
Breathe
shallow, but just keep breathing. To
breathe deeply is to try to, Thoreau-like, “suck all the marrow out of
life”. Maybe we’re just not up for that
right now. You don’t have to understand
it all, you don’t have to do a great job getting along with your family 24/7,
and you don’t have to function at your top 90 percent. If you’re knocked down, just get up, one more
time. If you feel that quiet, sick in
the stomach panic, just take a gentle breath.
It’s okay to not do great and have all wonderful times to impress
everyone on FB with. It’s okay not to
expect too much of yourself. Breathe
shallow if you need to, but just keep on breathing.
I
read through Job in the past few months.
I know I’ve heard the phrase “the patience of Job” but I have to be
honest, I did not read him as a terribly patient man. He was a righteous man, we have that from the
ultimate narrator of the story, God himself.
I have no quarrels with “righteous,” but patient?? Job railed against his friends (can’t blame
him there) and against God. He
complained, criticized, and questioned.
God. And God let him, and still
called him righteous, and made him the hero of the story. I think we can put too much on ourselves,
have high self expectations, and despair when in trying to suck that marrow out
of life we are left with merely a gross taste and emptiness. It seems to me Job got to be the righteous
hero merely because he didn’t curse God or pretend He wasn’t there. He was mad at God, and he had a problem with
God’s behavior towards him, Job. And at
the end of story, he got God’s seal of approval anyway. I don’t think anyone could say Job handled
his tragedies extremely well. Don’t we
have higher standards as modern Christians?
What Job did was breathe shallow.
And the message I get is, that’s okay.
I’m
reminding myself of these lessons lately.
Our family has been working toward adopting a Chinese boy for a
year. His adoption must be completed by
late May, per Chinese law, or he cannot be adopted at all. Our final approvals were being finalized, and
then came a worldwide pandemic, the like of which hasn’t happened for more than
one hundred years. I texted my 20th
mile friend (the one that has been there on the 20th mile of the
marathon, literally and figuratively) that sometimes despite all one’s best
efforts, you are screwed. It blows up in
your face. I feel that sick, quiet
panic. She told me it was okay. It was okay I felt that way. I felt her love and grace. I took a shallow breath.
