Don’t really
know how to start a publishable blog these days. So many subjects, but the
colors of my life are just all over the pallet, running into one another and
making an awe-inspiring kaleidoscope of life that I can’t even keep up with. The
cool part is I’m not even trying to control it anymore…I’ve just been content
to sit and watch with utter amazement how the events and circumstances that are
running in all directions make the most beautiful fractals and combinations.
Some look like abject disasters…and then all of a sudden, a picture emerges,
and all the muddiness turns into clarity…the chaos becomes a quirky new order.
Everything
in my life seems to step on the heels of everything else, creating a story that
will be cherished long after the final chapter has been written.
But today I
am thinking of Philip. I am sitting in my current favorite space and
wondering over the direction our life is going. I’ve spent more time in contemplation
the past two years than in any other endeavor, I believe, and things have
changed. Although changes come slow – one day at a time – there are times when
you look around and realize you have made a major shift, and days where the subtle
changes suddenly manifest with a vengeance.
Philip’s
health took one of those sudden turns back in December, with the onset of a
cough and congestion. When you can’t cough, that just spells trouble. I entered
the classroom of “Sudden health changes – 102”, which I believe I detailed in a
previous blog. What we learned from that was not so much how to suspend the
clock and just do what you gotta do, but to try and troubleshoot the causes.
Treat the symptoms…but try to identify the cause and remedy that if you can.
Our investigation showed that part of the problem seemed to be the stress of
school. While Phil hopes for a social life there, after 8 years it’s just not
happening. No fault…no blame…it just is what it is. The school did the best
they could, but there is just no denying that Philip is different. For all the
attempts to convince him he is the same as everyone else, at the end of the day
as he hangs in his Hoyer and I roll it over the bed we have to face it: No…no this is different. Oh, his mind is
sharp, as is his wit, but his life is about as different as a dolphins is from
a humans. And the current arrangement was just not working. Every time we sent
him back to school, his energy level would collapse, and he’d start coughing
and choking again. 
So, we –
Phil and I – decided that we would home-school for a while to see if that
helped. And it did. For a while. We were blessed beyond all reason to have a
live-in caregiver during that time. (That’s another blog altogether, but we
need more Sammy’s in the world.) We were able to skip the clock like we did
when he was sick, but without the sickness. No more rigid schedule…classes that
consisted of “Dirty Jobs” marathons on Netflix and a visit to the museum and
zoo, late night laughs and starting the garden. A little while into it, though,
we decided half-days of school might be a nice switch up, and all was well.
And then the
kids came home! Phil’s best social life is his family. His favorite times in life
have been when his brothers and sisters are here. Often, they bring other
people home with them and we have hosted some amazingly wonderful people as a
result, and Phil now has friends across the USA. They stayed for a month of
spring weather, garden-starting, gourmet cooking and fire-spinning at the
campfire. And then they had to leave again. It was a short season, and as the
crew prepared to depart for their new seasonal destinations, taking his
caregiver with, and a brother leaving for Afghanistan, his health once again took a downturn. While driving our last
guest to the airport, I was entertaining stopping at Children’s Hospital ER on
the way home. His anxiety about hospitals was the only thing that prevented me
from doing so. Realistically, what could they do for him there that I could not
do for him at home?
Realization#1:
When you share a life with Duchenne, you are pretty much on your own. There are
no pat, standard answers, and there is no rule book. You need a medical staff
that includes a neurologist, a cardiologist, an orthopedist, a pulmonologist, a
dietician, a primary care, an ENT doctor, perhaps a surgeon or two and their
attending anesthesiologists, a durable medical goods supplier, a physical
therapist, an occupational therapist, and some rehabilitation people who know
how to fit crippled people comfortably in their wheelchairs. You may need a few
more…but we’re not done yet. Each one of these specialists needs to have a
little further specialization in the world of Duchenne Muscular Dystrophy…a
disease which is hardly worth their time in terms of money and patients. One in
every 3000 boys born just isn’t a huge customer base. And good luck with that. Your
best resource is other parents and your own intuition – and even then…they are
just reference points. One doctor will prescribe steroids…another won’t. One
will prescribe heart meds, another won’t. One will suggest surgery…another won’t.
You get to decide what right for you and your son. And you just do.
So back home
to our arsenal of durable medical equipment: An insufflator/exsufflator or Cough
Assist machine, his suction unit and his nebulizer. His feeding tube assembly
with constant vitamin C running. And his XBOX, of course. A review of any given
day in this mode only serves to remind you that, yes…we are different. No copy
of Parents magazine ever contained an
article on the pressure setting of a cough assist, or how to best get the
coughless child to cough effectively. You end up doing whatever it is you have
to do to get that crud out, and that’s that.
Then one day
the Pulmonology people called…our appointment to have his pulmonary function
test was up. What timing. When we arrived, I told them they we didn’t need a
PFT – (every one has been an epic fail, owing to the fact that he can’t tighten
his lips around any of the equipment) – we needed a chest x-ray to check for pneumonia.
After lots of what Phil called cripple gymnastics, we got it, and got mostly an
all-clear. No pneumonia, just a small spot of atelectasis. (Medical
transcription training not-withstanding, you get to learn all these very
important sounding medical terms along the way. It’s just a small spot of
under-inflated lung.) The doctor gives us a scrip for antibiotics to make sure
it doesn’t infect, some settings for the cough assist that seemed ridiculously
high, and instructions to use his shaky-vest thing. Now we know something.
So, home we
go. One day’s worth of the dose of antibiotics has us realizing that it’s way
too high…unless we plan to spend every day doing the
hoyer-commode-bed-hoyer-commode-bed routine. I cut the dose in half and doubled
the time he’s on it. Yes…you can do that. Amazingly enough, an entire education
on antibiotics and modern allopathic medicine are all available on-line. There
is no mystery to it, and if you take any medications at all you really should
learn about them. Since we are on our own, here…and since every doctor that is
treating my son has a financial interest in his staying a needy-customer, I
have set myself up as the final authority – with Phil’s input – regarding all
of his medical care. (No judgement on the doctors here…I’m sure most don’t see
it that way. Unless, of course, you asked them to treat your kid for free….it
just is the way it is.)
The
antibiotics are doing their thing, I’m doing mine, and Phil is doing his, and
we have nothing but time now to wait and see what happens. As he recuperates,
we talk. A lot. About stuff that reminds you once again, that we are square
pegs on a game board with nothing but round holes. How many conversations about
death, dying, illness, life, living, happiness and sadness have you had with
your round-peg 15-year-old lately that were not merely theoretical? You start
realizing that your answers had better not be some made-up bullshit from a
million years ago, or the latest new-age fancy trend for feeling good about
things that hurt. Concepts like heaven and hell suddenly require some serious
validation before you pass them on in some type of blind faith. This isn’t you…this
is your child. Can you really guarantee them anything? What can you genuinely
assure them of? And what are you just hoping they will believe and be okay
with? What if you are wrong? They trust you…what are you telling them that you
KNOW is true? Wouldn’t it be nice if I had answers for those questions?
Unfortunately, no one can answer them but you, in the quiet of your own heart,
in the water of your own shower which hides your tears, fears and
uncertainties, and in the privacy of your own mind when the world is quiet and
dark, and in the moments you stand outside their bedroom door as they sleep,
and your heart begins to strain and ache with the love you feel for them.
And in one
of those moments, I made a decision. An epiphany of sorts. I am standing in the
hallway listening to his breathing, thankful there is no longer any rasp and
rattle. I stare at my son, and a heat begins to well up in my chest, meaning I will
either have to walk away and continue about my business, or stay and reckon
with the emotions that are sloshing around in there. The room blurs, and the
debate is over. Here comes the silent volcano. The denial, the anger, the
sadness, the bargaining…where, oh where, is the acceptance this time?
In the midst
of fear, and pain, and sadness and hurt, I realized that what I seek the most
is the thing that I am resisting the hardest. That seems incongruous, I know,
but at that moment, it made perfect sense to me…and it still does. I have spent
a very large chunk of my life resisting what IS my LIFE.
Let me
explain. What is it we all want? How about a life without Duchenne? We want a
cure, we want treatments, we want our sons to have better “full quality” lives
and to live longer. We don’t want coughs to be fatal, we don’t want wheelchairs
and hospital beds. We don’t want spine surgery, and we don’t want to be immobilized
by this disease. We want our kids to ride bikes and ATVS and have friends and
sleep-overs. We don’t want hoyers and feeding tubes and trach tubes and
ventilators. We want an all-expense paid vacation to the Carribbean, not
Children’s Hospital. We want our boys to play football and baseball and attend
their games, not worry that they play too many video games and that they are
socially stunted. And yet…when I stop to look at where the acceptance is that
will bring me peace, I realize that with every comparison I draw between what IS
and what I think it should be… I push
away the very fact of my – our – life and all that it actually is.
For every
moment I have spent fighting, hating, cursing, and anthropomorphizing Duchenne,
I have lost an opportunity to grow, to be and to experience this life. Because
every moment is all that we have…and how we look at it, react to it and
experience it is the writing of our life’s book. It’s how we choose to look at
anything that determines our reaction to it. And I realized the truth of “When
you change the way you look at things, the things you look at change.”
I challenge
any person of faith to deny the teaching that everything happens for a reason.
If you believe this – as opposed to just saying
you believe it, then you have to know that the presence of Duchenne in your
life is a gift. It is packaged in some very unseemly packaging, with all the
aforementioned accoutrements, and certainly emotional and physical challenges.
But this is just the wrapping paper! Don’t get caught up in it. If we spend our
life tangled in the wrappings, we may never get to the center of this tootsie
pop…and the intangible, miraculous and wonderful gift that is the reason it
showed up to begin with. If we say we believe it, then we need to act on it.
But what
about Phil? What does he think about all this? He hates this shit just as much –
no…probably way more than - I do. Easy for me, from a philosophical view, to
proclaim Duchenne a gift for my own spiritual betterment…at whose expense? Who
am I to put my son in that position just for the sake of my peace of mind and
sanity?
I think the
better question is, Who am I to take away his hopes, dreams, and his very
health with the nocebo effect, telling him what his body can’t and never will
do? How many of us refer to our kids as frail, or sickly, or ill, or diseased?
Even healthy kids will live down to a poor medical billing. We use our son’s
condition for far less noble things if we are honest about it. But in our
defense, we have bought the package. We are told our kid has Duchenne, given
the standard outline of what to expect in graphic terms, and sent home to deal
with that information. The only hope offered us in this corporately sponsored
package is the unrealistic hope for a pharmaceutical cure, which won’t help
anyone born today. Even if it did, are you ready for the world of hurt your son
would have to endure in physical therapy just to regain the movement in his
buckled under feet? To keep us busy, we are asked to prostitute our kids
disease for the monetary causes of big pharma, and then to feel good about it.
No judgment if that’s your thing…it just isn’t mine for these reasons, and I
can’t pretend it’s helping my son.
How does Philip feel – about being the bearer of Duchenne and
all its “gifts”? The better question to ask him, however, would be how does it
feel to be the bearer of Duchenne and all that sucks about it? Because that’s
how we’ve been seeing it. This was perhaps best illustrated one day when he was
at the respiratory bottom. There is no greater hardship to holding it all
together than to watch your kid struggle for air. So I’m looking at him,
waiting for him to come up for another hit off the cough assist, and he said to
me, “Mom, when you look at me that way and feel sorry for me, it doesn’t help.”
He doesn’t want to be the object of anyone’s
pity. When on the XBOX, he doesn’t pull out what he calls “The Cripple Card”
when playing with friends who wonder why he’s calling his mom for this or that.
But I
realized that’s the only perspective I ever gave him. It was handed to me, so I
handed it to him. This sucks. Your disease sucks. The things your disease
brings into my life suck. I hate it. This hurts. Oh, yes….love, love, love,
love all over you…but the disease…ugh. I suddenly had a “shame on me” moment.
I suddenly found
myself into a different world. I moved into a world where when children are
born who are in some way NOT like the “ordinary, normal” child, the community
comes to attention! “A special one has been born!” the murmur goes out through
the community. “To who? Who are the lucky parents?
And in the
nanosecond that I lived there, I looked at Philip sleeping in his bed, and
realized that I have perhaps done him the worst disservice, by not living up
the high calling that is mine. And then I am plummeted back into this world I
live in now, and realize that I have bought into and perpetuate the lie that is
our social paradigm: That he is diseased, he is less than. The things that he
cannot now, nor ever will do without a “normal” body are the highest and best
things…the coveted Round Holes...and he will have to find what second best thing he would like to engage
his Square Peg energies in. We are reduced to begging for everything, and apologizing for
our existence. I am daily consumed with
all that is not; all that I don’t
want, all that I despise, all that saddens me, all that hurts, all that I hate,
and all that I fear. And I realized…I don’t have to live here. And neither does
Phil.
But it will
take me to lead the way, as I have done his whole life. I tell him he is a
gift. Over the course of time, we have talked at length now about our lives,
and who we are, what we are doing, why we are doing it, and what we want to do
now.
We have
Duchenne. We need to decide whether we will see it as a blessing, or a curse.
It cannot be ignored…it must be one or the other, and that is nothing more than
our choice. We need to stop being mindless about this life process, and quit
pining for things that are not, (with all the attendant poor-pitiful-me
jargon), and start looking for (and finding!) the doors that are opening to us
because of Duchenne. We need to stop – and help our kids stop – hating on their
bodies because they are not like what we have defined as “normal”. While their
bodies may be in decline, there can be no doubt that a body that is loved on
will perform better than a body that is hated on. Can we make our way into a
world where physical activity and financial productivity are not the measure of
person’s worth? A world where we redefine our valuation system altogether?
I believe we
can – and we are. We no longer have to understand “why”…we know why: For a Very Good Reason. That is our FAITH. I have a life than carries testimony after testimony to the fact that the
shittiest, most horrible things that passed through have been the catalysts for
the best, most beautiful and profound positive changes. Every time. Why would
this be different? Do I live in a world where there is a force that is out to “get”
me? Or do I live in a world where it’s all working FOR ME, if only I stop
complaining long enough to see it that way? If I only believe that it’s for our
GOOD, and leave it at that?
Does this
new “acceptance” of Duchenne make it less painful? In some ways, but it does
not negate it all. Each layer of the gift that surfaces is a different pattern:
some nice, some horrifying and unfamiliar. We Duchenne students get an up close
and personal look at things few ever see – and perhaps ever want to see – but we
carry the backstage passes. If this be a gift, we hold our noses, cry our
tears, feel our feelings, pocket the change when we are ready, and carry on
with the next lesson – thankful for the experience. If this be a curse, we
wallow for years on end, crying for why, and what and who and how, seeking
blame and relief from the wrapping paper that is suffocating us. We forget that
it’s a gift.
I realize
not everyone can see this…this kind of revelation doesn’t come all at once, and
the application is a daily thing. It’s a day at a time growth – and like the
progress of Duchenne, it’s a little here, a little there, and a few sudden
roller-coaster drops that throw you off balance. Knowing it’s a gift brings you
back to center a lot faster than wondering who threw the curve ball at your
head and why.
It’s taking
Phil more time to see it this way, but he’s beginning to make more and more
progress toward it.
He asks me, “I’m not dying, am I?”
I say, “Not
on my shift.”
“But am I
going to die?” he still wants to know.
“Yup. So am
I, and everyone you know, sooner or later. Same as being born.”
“Am I okay?”
he questions.
“I don’t
know…do you feel okay?”
“Yeah…”
“Well, there
you go. You’re okay!”
“I think my
mind is telling me I’m here for a reason. It’s not my time,” he concludes, and
then asks, “Right?”
“Dude, I
KNOW you are here for a reason…so, yeah!” I concur.
“Maybe I’m
supposed to change the world. Do you think someone like me can change the
world?” he wants to know.
“You already
have, kid…in more ways than you know. And you’re right…you’re not done yet.”
Welcome to the world of the Square Pegs. We are not less than - we are different. We are not victims of a disease...we are the students of a single-gene disorder, which is the boot-camp we have been signed up for - and which is designed to make us the best and most fulfilled human beings we were meant to be. Duchenne Strong. But we need to see that Duchenne is not our enemy. It is, in fact, our ally, and if it's not, we need to make it one. Plenty of organizations have capitalized on it and made it THEIR ally...why don't we? Perhaps they've made it about the money...but I'm making it about LIFE. How much MORE life will this teacher afford us if we stop seeing our square peg status as a liability, and begin to see it as an asset...a window to a whole new world view?
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