Writing has eluded me for quite some time, or rather, I have
eluded it for one reason or another. Our
upcoming adventure seemed a purposeful time to fire up the blog again; we’ve
had many requests for updates on Camille’s next journey, so here we go.
This morning, we are bound northward to Minneapolis/St. Paul
to Shriner’s Hospital for Children, where we will ground ourselves for the
better part of the next month or so.
Raising a daughter who is first, our incredible
almost-13-year-old, and then somewhere down the list, a budding human with two
chronic medical diagnoses, has afforded us many lessons about life
balance. There has been no manual to
teach us how to live in-the-moment while at the same time grasping for the
parental crystal ball which guides medical decisions to secure the most
independent, happy, healthy future possible for Camille. To trick-ify the situation, it happens that there
is, in fact, not a crystal ball (it would seem that our quest for it was time
spent in vain), so gut instinct as well as the counsel of those close to us has
necessarily served as our guide. For the
most part, on a day-to-day basis, we have learned to keep the balance in-check;
however, there are times when instinct and input causes the balance to weigh
more heavily in one direction. This past
year or more we felt that tipping and sought out more specialized opinions
about her atypical lower body gait and balance quirks, brought on from her
cerebral palsy (or so we thought/mostly think), which was brought on by her
micro-prematurity. Long story short, as
she has grown rapidly, we have started persistently thinking something along
the lines of “Crap. If we continue with
current advice, by the time she is a young-middle-ish adult, she could
experience significant joint and mobility issues.” So…last September, we started navigating an
evaluation at Twin Cities Shriner’s Hospital.
Long, hard-to-make-short story, we’ve traveled up to
Minneapolis three times since the fall, first seeing orthopedics, which prompted
an UBER-fancy gait analysis at Gillette Children’s Hospital, which prompted a
neurosurgical consult, (with a side bonus of a spinal MRI) which gets us where
we are today. Tomorrow morning, Camille
will have a selective dorsal rhizotomy, a procedure which will treat the muscle
spasticity caused by abnormal communication among the brain, spinal cord,
nerves and muscles, which is caused by her CP (we think mostly). Doctors will expose her spinal cord and stimulate
the nerve rootlets which are involved in her lower body function, cutting the
ones that are causing the spasticity and thus her orthopedic and gait
issues. As an aside, as part of the
preparation for this surgery, she had to partake in an MRI of the spine, which
revealed that she has an extra lumbar vertebra (RIGHT?!?!?), and as a result,
has a tethered spinal cord. Basically,
this means her spinal cord isn’t free-floating within her spinal column, but
rather is “stuck” to some of the bone.
This, in turn, can cause spasticity as well. So, tomorrow she gets a “bonus surgery” to
have her spinal cord liberated. (So, the
newer question has been ‘Is the spasticity she has related to CP or to this surprise
spinal cord tethering?’ We think probably a little bit of both. Again, haven’t found that crystal ball yet.)
All of this has won her a highly anticipated 10-day
inpatient hospital stay in Minneapolis, with an additional 2-3 weeks of
outpatient physical therapy there to essentially offer remedial training to her
muscles, at which point we will come home and continue outpatient physical
therapy in Omaha. At this point, our
faith is that this choice has not been in vain and that she will reap positive
results which will improve her quality of life both immediately and down the
road.
This brings me to the best part of all of this, the
realization…AGAIN…that humanity is full of really, REALLY incredible peeps. I mean, we knew that, but now we REALLY know
that. Yet AGAIN.
I distinctly remember a time many years ago, in the darker
days, when I became keenly aware of a huge inner struggle with which I couldn’t
come to terms. On the one hand, after
the triplets were born and we were facing Camille’s vision loss head-on, I wished
more than I have ever wished for anything (and ever will) that we could make it
all go away. I desperately wanted a
magic wand to take away the pain, the challenges and the heartache. Yet, we were far enough into the journey to
have met some of the cream-of-the-crop in the human race, see human kindness in
its finest form, and truly have soul-altering connections and conversations
with strangers, family and friends, knowing that we would not have had these
experiences if life had not turned out the way it did. While I was fighting what was happening, I
realized that there was a giftedness in it.
This has continued to reveal itself over the years as we continue to
have incredible experiences and connections and are finally able to start
reciprocating to those who need an understanding heart. These days, I have mostly tamed the
struggle. Not going to lie…if that magic
wand showed up and promised to take away the vison loss and the CP for Camille,
I’d buy it. And I would sacrifice a lot
for it. I’m human after all. Yet, since we know that isn’t possible, I now
approach her past and current adventure knowing that the struggle in it will
also carry incredible-ness that would otherwise not have been possible. I will speak for both Bill and myself (because
he loves it when I do that) in saying that our goal is to help her see the
giftedness, too. Which, in reality, is
kind of a silly goal because it is her positive lease on life that taught us a
large part of this lesson in the first place.
We have already seen the blessings in motion. Family, friends, and co-workers that are
friends like family, have showered humility-invoking kindness upon us. No detail has been left not thought of. Aunt Sissy and my parents and Sarah are
taking care of the hooligans at home.
Gift baskets have arrived from our coworkers, friends and family who
have considered every single detail imagined…from quarters for vending machines
to money for food and gas to entertainment to ever-important snacks to
Creighton gear to “13th Birthday in a Basket.” Specials in our life have reached out,
planning surprises to brighten her already unwavering optimism. I am reminded that Liv and Jack must be among
the most charismatic siblings and children a sister and parents could ask
for. The pictures above are a capture of
just a smidgen of the physical out-pouring of love. (Bonus points if you can spot the bit of
daily calamity I didn’t even see at photo time).
We are told that the journey ahead will be a tough one, but
there is confidence that the end result will be worth it. While that can mean a lot of things, most of
which we do not yet know, we do know that we are incredibly, indescribably
grateful for the amazing people who surround us and lift us upward. In following Camille’s charismatic and quirky
rose-colored glasses-ness, we are determined to find the connections and
experiences in this journey that will forever change us for the better. Stay tuned.
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