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| 18 months before (curve was worse by surgery time) |
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| After surgery |
On November 3, 2015, my amazing little guy went through the longest and
most intense surgery of his life so far. In order to correct Bug’s severe
scoliosis, the surgeon fused all but the top two and bottom two vertebrae and
installed two titanium rods along my little boy’s spine. Of all Bug’s
surgeries, this was the one I most wanted: not because of the incredibly
painful experience, but because of the potential outcome in giving Bug a
straighter back, helping him sit taller and more balanced, and preventing
further curvature which could negatively impact his growth and health. My focus
on the positive outcome, however, did not prepare me for how incredibly hard
the recovery would be. My poor, brave boy…
Through the four weeks of not sending him to school, being
mostly confined to the house, and caring for a whiny and often frightened
strong-willed, energetic, adolescent boy, I could sense that this was a
learning opportunity if I chose to look for the positives in the midst of all
the negatives. I grabbed a notebook and started writing some random thoughts on
lessons applicable to my life and others’ lives: truths and perspectives and
challenges for anyone going through a painful, life-altering time of cutting,
reshaping, and healing into something new and stronger.
*Painful correction and outside intervention are required
for life-changing and life-improving changes. And severe deformity requires
severe correction. When we choose or are forced to face the sins, shortcomings,
and harmful habits which have had a lifetime to develop and become ingrained in
us, the “fix” can never be quick and painless. We may seek out temporary relief or “Band-Aids”
which make us feel better—and they may help or offer relief for a time. Until
we dig deep to the root cause of our character flaws and our emotional
struggles, however, surface corrections will merely mask the issue and do
nothing to prevent our dysfunctional selves from worsening. Few of us can do
that on our own or without extreme and painful intervention. The blades that
cut and the tools and careful hands that push and pull and reshape are
necessary to begin the work, to open a space inside for the Heavenly Surgeon to
do His work. When our hearts and minds have strayed too far from the plumb
line, sometimes cutting and shaping are not enough, and outside aids are needed
(support, instruction, and exhortation from those more mature and wiser than
us) to keep our old habits and stubborn ways from undoing the Surgeon’s work
and allowing the dysfunction to return. We can trust the wise, careful, and
experienced hand of the Surgeon and receive aid from the support people He has
placed in our lives. We can trust that these extreme measures are required for
necessary and lasting change.
(Bug-life example: Now for a little medical lesson. Bug’s
spine curvature, as well as his hip dysplasia and foot deformities which have
already been surgically corrected, are a direct result of his form of cerebral
palsy: spastic quadriplegia.
“Spasticity is a movement disorder characterized by
involuntary muscle stiffness and tightness.
This condition usually affects a group of muscles, typically in the
upper or lower extremities. Spasticity
can be painful and often debilitating, particularly when it prevents movement
or produces abnormal joint positioning…
There are many common causes of spasticity. Lack of oxygen before, during, or after birth
can lead to cerebral palsy.
Approximately two-thirds of patients with cerebral palsy experience
spasticity…
Spasticity can vary in severity and produce muscle
group-specific symptoms. Some people
experience mild spasticity, while others experience pain and significant disability
as a result of spasticity. When
spasticity affects one or both arms, a person may experience bent elbows and
wrists and clenched fists. They may have
difficulty grasping objects, dressing, eating, and writing. Spasticity can also interfere with balance,
making walking difficult. Spasticity of
one or both legs can cause a flexed hip, stiff and flexed knee, and
hyperextended big toe. This can greatly
hinder one’s ability to sit, stand, transfer weight, walk, and position in bed.
There are two common problems that can occur with
spasticity. Contracture is one of the biggest, and most painful, concerns
associated with spasticity. This is a
condition whereby the muscles permanently shorten, causing disfiguration of the
joint. Clonus, rapid and repeated spasms of the muscles, is also a common
concern related to spasticity…Skeletal problems can be the result of many
different types of symptoms in the cerebral palsy patient. Children who have spasticity are at risk of
developing contractures. Contractures
are a muscle shortening which makes the body parts associated with the muscle
contract. This in turn can cause serious
skeletal damage, especially if left untreated.
The child’s body will grow in such a way that the bones will be
deformed, causing further pain and movement problems later in life.”
[from http://www.cerebralpalsysource.com/About_CP/index.html,
articles on Spasticity and Skeletal Problems.]
Spinal deformities are very common in spastic quadriplegia as
the severe tightness in his muscles pulls joints and bones out of position. His
brain damage prevents the proper transmission of signals which typically tell
the muscles to relax. His muscles do completely not relax. Ever.
While fusing most of his vertebrae and installing titanium
rods seem extreme, without them, Bug’s tight muscles and habits of posture and
movement would just pull his spine crooked again, affecting his balance,
posture, lung capacity, and other joints and organs.)
* The more we fight the Lord’s good plan and His shaping,
transforming work in our lives, the more we experience fear and pain and anger.
Just as Bug had no reason to fear the scalpel in the competent surgeon’s hand,
so we have no reason to fear the scalpel(s) God uses in our lives to correct
and shape us into the likeness of His Son. The more we resist and argue against
God and the painful, yet transforming, “surgeries” He allows in our lives, the
longer, more difficult, and more painful the process can be. When we choose to
rest and trust—even when we don’t understand and even when every fiber in our
being wants to fight and escape the pain—God is free to complete His good
purpose in us: the heart surgeries and time of healing required to remove the
idols and other things in our lives which keep us from knowing, loving, and
serving Christ as Lord. (This concept borrowed
from my friend’s book: http://www.walkingrighthere.com/#!shop/c1a0d).
(Bug-life example: As Bug looked at me, at the doctors, at
the nurses all working to help him, I saw eyes of fear, confusion, pain, and
anger. His body tensed and he fought with all his hyper-spastic strength,
sometimes requiring multiple hands to restrain him. Yet, what seemed to him to
be torture, was all for his good, to help him function better and heal safely
and quickly. His limited ability to comprehend what was going on and to give
and receive communication, made it nearly impossible to reassure him the good
that was to come. If his precious mind could have understood, he would have
learned that the more he trusted and relaxed the less it would hurt. Instead,
he experienced the opposite: his fighting and tensing up out of fear made the
pain worse and put him at greater risk to experience what he feared---falling
or hurting even more.)
*Good, positive, and beneficial change is very painful and
disruptive, carries greater risk and fear, and requires a long recovery and plenty
of rest. Shortchanging the process in any way will not produce the same
results—and may be detrimental to future health and growth. Furthermore, to be
successful in the long run, real change requires adjustment to an entirely new
posture and major changes in functions throughout our bodies/selves. As one
pastor has put it, “Change isn’t change until something changes.” Those changes
may be unwelcome and unforeseen, but real transformation requires all the steps
we went through with Bug’s surgery: evaluation, careful pre-op procedures, painful
tools in a wise surgeon’s hand, support and care from experienced and caring
people, and a long time of rest and recovery. We may be focusing on changing
one aspect of our lives (overcoming one sin or healing an emotional wound or
reprogramming habitual thoughts), but that change will carry over into other
aspects of our lives and may confuse both ourselves and those around us.
(Bug-life example: One unforeseen result of the surgery
during recovery, and still present to a lesser extent months after surgery, was
the change in Bug’s sense of balance. He had grown so used to his spine being
an s-shaped curve, that having it straighter made him feel off-balance and
unsure of how his muscles worked along his back, shoulders, and arms. Multiple
times a day during the early weeks, he would scream out in fear that he was falling,
even though he was exactly where I had left him, secure on the sofa or in the
middle of my queen-sized bed, with no possibility of falling.
Bug also continues to figure out how to use his arms: another unforeseen difference caused by the straighter spine pulling his shoulder muscles differently which in turn pull on his arm muscles and joints in new ways.)
*Pain makes us needy, demanding, and angry. It is said that the
most dangerous kind of animal is a wounded animal. I’m convinced that applies
to people, too. But those who love us can have compassion on us—even when we
are at our ugliest—as they allow God’s grace to fill them with patience and
understanding in the face of tears and screams and verbal or physical attacks.
(Bug-life example: For the first time, we saw our boy who typically charms everyone he comes in contact with--saving his grumpy, mean and aggressive side for his family--lash out verbally and physically at doctors and nurses and other strangers. Most of the lashing out, however, was saved for his family, Mom and Sister most of all. We daily had to call upon the Lord for patience and love and grace for Bug and each other. Sometimes, all we could do was take a deep breath and walk away. We were worn out physically and emotionally, but our love for Bug did not diminish. And we all made it through the experience in one piece!)
*When we hurt, we long for comfort and want
someone—sometimes anyone—to help us, to ease the pain, to make us feel “better.”
This drives us to dependence. When we are pushed to dependence on those who
truly love us, know us, and care about us, we find what we need and want. And
when we ultimately are driven to depend on the Lord---because we have learned
that a “human merely being” is as weak and powerless as we are—then we
experience God’s perfect and wise plan for suffering.
But (this is a big “but”), how often we cry out for and seek
comfort in someone or something not present or not reliable, as no fallible
person or object can be ever-present and ever-faithful. Our pain-induced tunnel
vision keeps us from seeing God’s presence and receiving comfort and healing
from the only One who is always with us to hold and help and encourage us. How
silly of me and how grievous to God (my heavenly parent) that I scream and cry
and whine and demand someone who is not always physically present and who could
not help and comfort as God—ever-present, ever-faithful, ever-strong—can and
will.
(Bug-life example: My mother’s heart ached (as my Father’s
heart must), as I witnessed again and again the futility of my sweet boy sobbing
and screaming for his absent parent, who could not take four weeks off of work,
when his present parent longed to hold him and comfort him. As sad as it was, I
cherished the glimpse of God as my loving, tender, longing parent—whose love
does not diminish when we look to someone else for comfort. He patiently waits
until we remember that HE is the only one who can truly meet our deepest needs
and heal our deepest wounds and comfort our deepest grief. Because, as much as
I love my Bug, I will fail, I will let him down, I cannot do or be all he
needs.)
*One of the more practical lessons I learned during this
time was how important it is to ask for help. The people in our lives care more
than we may think and are often willing, even if not able, to help out in any
way they can. If we don’t speak up and communicate practical, emotional, and
spiritual needs, however, those needs won’t get met. Our friends and family
members are not mind-readers. Rather than not asking because of the usual
excuses (“Oh, they might be too busy,” “I don’t want to be a burden,” “I can
manage this on my own,” etc…), we can take responsibility to express our needs
and allow those who care about us say “no” if they need to. Usually, they want to say “yes” and welcome practical
ideas on how to help.
(Bug-life example: Following our pre-op appointment [see
previous post], I began to see the seriousness of this surgery and to anticipate
a difficult recovery. Having learned from past surgeries and other times of
need, I knew that specific and organized ways to help were more likely to
happen than vague answers to, “Let me know how I can help.” To accomplish that,
I gave the details of the surgery and recovery to our co-op board so they could
set up a meal schedule for the hospital stay—meals for parents get expensive at
the hospital—and for the first week at home. We received a full two weeks of
meal! And—because I had asked—a number of friends and family members came to
visit at the hospital, helping to alleviate the lonely tedium of a
post-surgical stay.
Another example: We practiced
the “squeaky wheel gets the grease” idea with the staff of the surgical ward.
Due to over-scheduling, we were put into a shared room immediately after the
recovery room. Really? A painful, invasive surgery on a developmentally
disabled 12-year-old boy in a room with a little boy and his parents—who were
obviously not battle-hardened parents who had gone through this a number of
times. I apologize to that family for the screams of pain and panic coming from
the other side of the curtain. Eventually—sadly only in time for the last
day/night there—our frequent requests to be moved—and Bug’s screams—got us into
a private room. Peace and quiet at last...)
*There comes a time in any
healing process, whether physical, emotional, or spiritual, when we have to get
back to daily life and step out into the world. Oh, how hard it is when we have
grown accustomed to rest and quiet and to freedom from (or neglect of) the
activity and responsibilities of “normal” life (or as normal as a life changed
by a painful corrective surgery could be). If we wait until we are completely
healed, free of pain, and feeling “great,” we risk becoming so adjusted to rest
and having others care for us that “normal” life is a shock and we resist the
change. On the other hand, if we push ourselves into stepping back into normal
routines and activity too soon, we risk increasing pain, reopening wounds, and
exhausting ourselves past the point of functioning. We need to discover a
balance between the “safe” amount of activity which distracts us from the pain
and helps us slowly get used to life again, and the beneficial amount of rest
and stillness required for continued healing. And sometimes we only find that
balance by trial and error.
There is, therefore, a time to step out—cautiously and
slowly—even if we are not completely healed or free from pain (or perhaps because we are not), a time to get back
to “normal life,” while remaining alert to signs and symptoms pointing to a
need to pull back and rest.
(Bug-life example: After four weeks of recovery, I sent Bug
back to school, for his sanity and ours. I knew that the distractions of school
and the chance to increase his activity level and his time in his wheelchair
would be beneficial, especially under the loving and watchful eye of his
one-on-one aide. And I knew that the quiet and freedom at home—free from Bug’s
whining and demanding the spoiled life he had been living and free to leave the
house when we needed or wanted to—would be good for the rest of us.
And so, even though it was disruptive to my schedule, that
first week in December, I drove my boy into school late—I was not quite ready
to get him, or myself, up at 5:45 AM every morning—or picked him up early so he
could rest. The extra time and effort were worth it, both to see his smile and
excitement over being back at school and to give those of us at home some peace
and quiet.
Was it too soon? Did I push his body too much? There is
always that question with a special needs child who cannot understand or
communicate his needs with his caregivers. Perhaps it was, but I have no way of
knowing if waiting a week would have made any difference. We did it. He did it.
It was slow going and required some interesting modifications to make the
experience as easy on his body as possible.
But, as I’ve said before, my amazing Bug is one brave,
tough, and live-life-to-its-fullest kind of kid.
I guess we all have lessons to learn from him.)
Bug sits a little taller and a little straighter now, his
deformity corrected to an acceptable degree (I can’t wait for the day it is
100% corrected and I get to see my crazy kid dancing before the throne of
Jesus). We too can come out of painful, life-altering experiences a little
healthier, a little stronger, a little closer to who God created us to be. It
takes time and requires us to submit to our perfect, Heavenly Surgeon, trusting
that He knows what He is doing. The results are worth the painful process.
