First, let
me say a heart-generated THANK YOU to everyone who has held Philip up in their
thoughts and prayers. My beliefs are such that my request for prayer and
positive thoughts are no trivial affair; not just a feel-good measure for me,
or a subtle cry for emotional help. There is more and more scientific evidence
of the true power of our thoughts and intents than we have eyes to see or ears
to hear, and the unified thoughts of a believing community are an unprecedented
power.
Having said
that, let me tell you that it’s been a journey into uncharted territory for us,
hence the title. Living with and experiencing Duchenne has been, is, and
continues to be an eye-opening and challenging life, with no charted course. You
have to make it up as you go, because what works for one person may or may not
work for another. Each participant is utterly and completely unique. This puts
us all in the position of basically having to make up the rules as we go,
according to our beliefs and convictions.
Part of the
package that is Duchenne is knowing that while the disease is a slow moving
vehicle, changes can manifest very rapidly, primarily when peripheral systems
take a hit, like the heart and/or lungs. In this case, Phil has a near complete
inability to cough and clear his lungs. Therefore, the annoying cold that went
around the house becomes a potential life threatening situation if you can’t,
in fact, spend that dreadful day or so hacking. Think about that next time you
are frustrated by a cough. Your cough is your friend, believe me!
Knowing that
information is essential, but that is all. In fact, once I knew it, I tucked it
away in a file in my mind, labeled “Intentional Denial”, because thinking about
it daily, obsessing about it even in times of good health, lamenting it and
crying about it and cursing it I found to be a complete waste of my energy,
devastating to my mental and emotional well-being, and turning me into less
than the best mother I could be to Phil. Have the file handy, but don’t bother
to keep it open on the desk. One day you will need to act upon it, but if today
is NOT that day, then rejoice and truly LIVE another day in your amazing life.
Last week I
had occasion to have to access that file when Phil came home from school
sluggish, tired and weak. He actually asked
to go to bed…red flag for him. I get him in bed and mentally pull up the file.
What now?
First, I
need to remember the importance of my part in the partnership that is me and
Phil. It would be in neither of our best interests if I become an emotional or
mental basket-case at this time. So I sit, and I meditate, and ask for a higher
perspective from which to function…a place of clarity and deliberateness. I
tell Time that it is dismissed. For the duration of this experience, it will
not matter. My sole focus will be Phil and his well-being, and my role as a
caregiver will require attention that cannot be structured by the clock. The
circadian rhythm is the only indicator required to measure time now. And I
settle into that.
Next, and
most importantly, I make a conscious decision to walk through this in a state
of love, and not in a state of fear. The things that my brain would like to
remind me to fear are many and threatening, but I must bring myself to that
place that understands LOVE for my son trumps anything the external and
physical world can throw at us.
With the responsibility as my son’s caregiver
to be his hands, arms and legs, to carry him, as it were, I must remind myself
that no one wants to be carried by an unsteady or fearful horse. For him to
endure his part of whatever this is coming at us, he has to be confident in his
ride. No spooking, no bolting, and certainly no white-eyeballs. (Perhaps only
horse-people will get the analogy…J ) He needs to know he’s safe and secure
in my love for him. Perfect love casts out fear. True story.
The last
stop on my meditation was to address the fact that I am not in this alone, and
there is no need to try going it solo. We are all connected, and these are the
times when we do well to draw upon that connection for the support that we
need. And so with much gratitude for the companions that walk beside me in the
physical, Mark and Phil’s caregiver, Sammy, I also sent out a request for
assistance from both my family and the Duchenne community. I know that the
energy released from each heart as they read my request was transferred instantly
into our Prayer Account, and knowing that…it was Game On.
Step one, I
decided with all clarity, was hydration, medication and respiration. Grateful
beyond all reason that we had a g-tube placed two years ago before his spinal
fusion. This enabled me to give him a constant supply of water, vitamin C,
chicken broth, and herbal teas at the rate of 400 cc an hour. Then guaifenesin to
thin the mucous in his chest, Benedryl to dry up the leaky nose and eyes, and
albuterol in his nebulizer to help open his airways. And finally, his cough
assist – a rather obscure machine that coughs for you – if you have what it
takes to actually let it. We humans
have a thing about breathing on our own subconscious level. We do NOT like it
when some machine tries to breathe for us. There may come a time when
desperation for air makes it a palatable option…but not when you can still do
it yourself. Then it can be an anxiety ridden battle for the breath.
I’d like to
be able to give a clear and concise breakdown of how everything went after
that, but things became rather blurry. An hour at a time. A fever develops. His
vitals fluctuate…up, down, up down. Awake, asleep, out of bed, back to bed. At
one point, I have started to ponder the parameters and at just what point his
care may have to be turned over to the medical establishment – a contemplation
that as of yet brings no peace, so I abandon it in favor of just sitting with
him and watching movies, and keeping him comfortable. Instead, I contemplate the
balance of my Prayer Account, which, instead of depleting seems to be on the
rise. And I sat in awe as his 103 fever evaporated in 15 minutes without him
even breaking a sweat. I thank you all for that. This gave both of us a much
needed infusion of hope.
Over the
course of the next few days, we continue on our hydration, medication and
respiration efforts. On Monday he had a standing appointment for a spine x-ray
at Children’s Hospital, and he is actually sporting a bit more energy. His
x-ray looks good, but I am unable to get a desired chest x-ray done. Part of my
reluctance to turn his care over to the medical establishment is rooted in the fact
that his care is managed there in a manner that frighteningly resembles The
Manhattan Project: 130,000 people, two billion dollars and nobody knows what
anyone else is really doing. Coordinated care is an oxymoron at this time. As
per my previous analogy, this is one horse I
don’t want to ride.
By the time
we arrived home yesterday, Phil was exhausted and needing hydration, but in
good spirits. My mother called, and I was reminded that it would be good to
update those who have been praying, and today is my attempt to do just that.
Today Phil
woke up pretty congested, so we started his day taking the last of his
antibiotics with a side of vitamin C.
His fever has not returned, and despite extreme difficulties in
scheduling his future appointments this morning, I am very optimistic for his
complete recovery.
We are not
out of the woods, however, because the fact is that we live in the proverbial woods. Like the boreal forests of earth, it
is as beautiful as it is dangerous; as delightful as it is deadly. It’s a world
of extreme polarity, which leaves the residents with a choice of how to respond
to its environment, in either love, or fear. I lived too long in fear… a place
where the mind wanders into all the horrible things you may see or experience
in this unstable place. Enough of that already.
Instead, I have chosen to
purposefully pursue the path of love through this forest. When I stepped out in
faith on that one, I was immediately rewarded with bird’s eye view of my life,
and the transient nature of it. When I begin to understand the scope of that, I
realize that all fear is doing is robbing me of the extreme beauty all around
me. In fearing and thinking about what might happen, I miss out on what is
currently happening – and thereby miss a good chunk of the stuff of life. If
Duchenne has done nothing else, it has made me acutely aware of very
preciousness of every moment we are alive!
And so I choose to live in love. And
in charting my course – or creating a template for any crisis that may arise, I
have begun to truly understand the place for prayer, which is generated from
the place of love in the petitioner. It reconnects us on a spiritual level, and
produces the most healing results.
I no longer
curse anything about my life in this place. It simply IS. How I choose to frame
it is entirely my choice – and I will benefit from the fruits of love, or
crumble under the weight of fear. Thank you for joining me and upholding my son
in the light of grace and carrying us through this current crisis. We are going
to be okay!
