February 16, 2013


parker continues to do poorly overall. his pain levels and rages are intense and have remained significantly increased since this downward spiral began in mid october. our doctors have implemented countless approaches and nothing touches the pain. parker is at the end of his rope. evenings are the worst. many are spent with him whimpering or moaning in agonizing pain. 

the nystagmus that parker developed at the end of september also continues. 
there have been many theories as to what is causing it but so far no treatment approaches for any of the possible causes has helped. 

the results from the MRI he had in december came back clear. we were fully preparing for and expecting different results. we are incredibly relieved there is no tumor and that his brain looks "fine" but it is frustrating that the cause of the nystagmus remains unclear. 

on dec 27 we saw our first neuro-ophthalmologist (NO). he gave parker an incredibly thorough exam. he was very perplexed and intrigued by parker's case. he said he had never seen anything like this but noted that he mainly sees adults and that nystagmus is most often a childhood issue. while the MRI results provided some assurance that there is not an urgent issue behind the nystagmus, he felt it was necessary for parker to be seen by a pediatric NO. he was concerned enough to personally phone this doc in order for us to bypass the 4 month wait-list. we were seen by the physician assistant (PA) of this new doc for a preliminary assessment on dec 31 and were scheduled to see the actual doctor the following week.

the PA did the initial intake exam. it was very, very short. this surprised us as the referring doc had spent a solid 30 minutes examining and re-examining parker's eyes.

i felt that the PA was not taking enough time to observe therefore was not seeing the whole picture. i tried to diplomatically explain the symptoms and how they present. i know my kid's condition. i have been observing and monitoring it for nearly 5 months. 

she acknowledged that what we described was highly unusual but that what she had observed did not appear to be as severe. she then concluded that if the severity was diminished then maybe it was starting to go away.

"no, it's not diminished at all." i stated, "it was very intense last nite and right before we arrived this morning. it was present 4 days ago when he was examined by the previous NO doc. he saw it and that is why he referred us to your office."

I paused for a minute and then carefully added,
"the nystagmus is intermittent and fluctuates quite dramatically. one has to watch long enough in order to see all of that."

my suggestion that she had not yet seen the full presentation of parker's symptoms was ignored.

"hmmm, well, his MRI was fine. maybe this is a voluntary thing." she paused, gave parker a long, hard stare and then cryptically inquired,

"parker, are you making your eyes do this?

both graham and i nearly launched off our seats at her. 

yes, sparky has super powers and can make his eyes frantically rotate and vibrate on command.
that is absolutely absurd.

we almost did not return for our scheduled appointment with the actual doctor.  

but we did. 
we know that all his other doctors are concerned enough that we need to follow up. 

when we arrived the following week to see the doctor, she gave him a cursory once over and initially appeared to jump to the same conclusion that her assistant had. however, this time we did not mince words nor try to be diplomatic. i simply insisted that she needed to spend more than 5 minutes examining his eyes. i told her i would stand behind her while she examined his eyes and that she needed to watch them until i saw what we have been seeing for past 5 months. thankfully, she listened. she re-examined his eyes - (with me breathing down her neck) and then she saw it.

"oh," she says, "i see it. no! that is definitely not a voluntary movement."

no sh*t sherlock. glad we cleared that up. 

she then took video footage of his eyes and has forwarded it on to a 3rd neuro-ophthalmologist. according to her, this doc is the 'eye movement guru'. we are scheduled to see this new doc on february 18.

we wait. we watch. we feel as though we helplessly stand by under the unrelenting assault of this disease. there has never been an understanding of why this is happening but i've always determined within my heart that i would choose to see God in it. the longer this goes on, the more difficult that becomes. 

i contemplate.

i hear the faint buzzing drone of a lone summer wasp
i look for it
see it caught behind blinds in the bedroom of my son
it steadfastly bumps against the window pane 
seeing out yet not seeing the way out
it's perseverance admirable
it's stupidity obvious

my mind cycles round and round in an endless loop
the plight of the bee is lost on me

swallowed whole by the noise screaming within
an exhaustive assault of conflicting thoughts 
i seek you God
but do i see you?
some days yes
other days no
too frequently not

vision shrouded by the depths of the midnite blackness
the blackest of all black 
no light penetrates and 
so remains the mystery of God
unseen yet seen

behold creation in its splendor

i see Him in the rich golden hues of autumns color, 
i hear His creation in leaves crunching underfoot
i feel Him in the blustery winter's wind, 
tearing eye and blanching cheek
God is good
life is ugly

close eyes to the ugliness
shut out the messiness
endless suffering
torment of mind, body, soul

God is Good?

i float in misery

in the waves of the mystery
restless i stumble along unseeing
body, mind, soul do not beat as one
they war and they fight 
in an endless internal tug of war 
my tumultuous existence questions His ways

somewhere someone prays for sunshine
somewhere someone else prays for rain
same moment in time
clouds part
sun streams down 
"praise God for answered prayer" shouts one
is the other left to ponder their non-answer?
why one and not the other? 

mundane requests appear to be answered every day
what i perceive with my finite human mind
leaves me questioning the answers
when He answers
how He answers

i hear offered praise for answers;
the child that has arrived safely 
the baby that slept thru the nite, 
the job, the apartment, the car, 
or so it goes

we pray for healing
and we wait
we prayed for an MRI 
and had no wait
praise God for that answer

that answer revealed nothing
only brought more misery in it's wake
red, raw, blistering, burning skin
that was an answer we did not need

my troubled mind whirs on 
His ways are not our ways
no kidding, Lord
will this life ever make sense?
can it?
should it?
how do i live without question? 

can i live in hell yet still see God?
how do i watch my child's endless suffering and still see God as good?

He is just
all loving
He is good

some days, i find that hard to believe

what about the mother who prayed for her child's healing?
what is in her heart, her mind, her soul
as she lays her sweet baby to rest?
lays to rest in the cold, harsh earth
such a benign term for the most unnatural finality 

my child lives
i praise God for his life
but at what cost?
he lives an unearthly existence

convulsing heart
racing mind
i rage

i cannot see
i spit furor at what my eye sees

i'm on my knees
face flat on floor
sobbing, begging, roaring, pleading
heal my child, Lord

nothing changes
everything changes

my baby lays crumpled on the floor
a writhing heap of endless suffering
3.5 years
a childhood lost
innocence squashed under the punishing blows of unseen forces

God, today, my boy told me he doesn't think You love him

my very being collapsed within me
i cradle my crumpled, sobbing, endlessly aching child
i hold him tight
i weep, i cry, i grieve that he must wrestle with feeling abandoned by you

my fevered brain, my scorched heart, my sinking soul
searches for answers with finite mind
seeks for the truth amid twisted feelings
i seek to see for him, for me, 
i do not see the purpose
i do not see the plan
i question "this plan"
how can this even be "the plan"?

then a vision shifts into view

i see a cross
a crumpled, broken body
i hear 
"my God, my God, why have you abandoned me?"
God's own son knows our pain
slain for our gain

God's plan for our greater good

oh how He loves us
He loves you
He love me
He loves my son
with an infinite love too consuming for finite mind to comprehend

the answer is Jesus
there was a plan
there is a plan
even when it remains unseen

i watch
i wait
i pray

i pray
i wait
i watch expectantly

one day we will see