It does seem
as if life with Riley is all about schedules and appointments. The production of planning, getting through
the next activity and arriving at the right place and time, in the reasonable
mindset, wear us out. I find myself
procrastinating with each line on my list for the day and admittedly some of
the lines are left unmarked.
Riley's
schedule is packed as Summer ends very soon as Lee County returns to school on
August 8. The boys and I have spent a
lot of time traveling and hanging out in waiting rooms. These events wear my patience thin with the
various people we encounter. It takes a
great amount of energy simply to show up somewhere with Riley that finding us
easily disrespected vexes me (
See April Fools in a Doctors Office or
My Fragile Child).
The
neurologist clinic appointment had been canceled on us and rescheduled to a
later date and time without consultation.
I had asked for a time change if possible to an earlier hour and was
told Riley could be seen at 8:20 am. We
arrived with moments to spare and watched three ambulatory patients arrive
after us and leave before we were called.
I questioned the nurse on one of her pass through's to make sure she was
aware Riley was available, she assured me she did. At 9:20 am we were finally called back for
the same nurse to take our stats.
Unhappily, I paused at the scheduling desk reminding the woman behind
the computer of our allotted time. Only
then did she notice, but did not care, that we had been booked at 8:20 at the
same time as another patient. My voice
raised and our Neurologist rescued her by dispensing with our stats and seeing
Riley immediately. The doctor has no
fault in this and I immediately felt guilty for complaining. Dr. Osterman has been nothing but kind,
considerate and gentle with us. However,
this treatment by office staff has become all too common everywhere we go. Do some see a child in a wheelchair and feel
that child's time is somehow of less value... he will not complain, he does not
have a playdate planned and mom is simply a state at home mom with no value to
society.
The week
continues with lots of unreturned phone calls and planning to finally schedule
a Neurosurgery appointment for this coming Monday. A CT and shunt series at a radiology
office. The dreaded Ophthalmology has
been delayed until Fall. All of it
adding to the stress of going through these motions to keep all parties
placated in the oversight of Riley's care.
Wednesday
found us at the
dental school,
for both boys for teeth cleaning. The
school has been a wonderful way to care for Riley's needs. The young dentists are undeterred by the
special needs challenge and interested in his health as opposed to some of the
long-term professionals we have tried in the past. Hopefully no one is offended by my summing
them up so disinterested in Riley, I spent my early years of work in my fathers'
Oral and Maxillofacial Surgery Office and learned the importance of respecting
the patient through observing my Dad over the years. I
maintain a "cheat sheet" of important information which I have shared
with every medical office Riley enters.
There are no secrets to Riley's condition. Upon being called back for our appointment, a
previously unknown Sergeant had a copy of Riley's cheat sheet up on the
screen for review. "Any changes to
his condition?," she demanded.
"No, pretty much the same," was my answer. Then I added, "he seized on
Sunday." This met with a reprimand
that they must know everything right up front and she began to argue with
me. We had only just begun the
conversation. Here she was with
full-disclosure right in front of her and she wants to yell at me. She started to go down the road that he could
not even be seen that day having had a recent seizure. I was taken aback. Perhaps special needs do not have the right
to full care, it is simply too risky for medical professionals to work with
them? Maybe she does not comprehend
special needs or the explanation of "seizure disorder" that I had put
directly in front of her. Before the confrontation escalated, a familiar face
appeared, Dr. Magher, Riley's first dentist in that office before she
graduated. She had returned to be one of
the leads in the office and she was a very welcome and reassuring
presence. The Sergeants' concerns were
left behind and Riley received his x-rays and cleaning which he tolerated
beautifully.
Some of my
frustration with all these appointments is due simply to navigating everyone we
encounter. So frequently, people block
our path, quickening their step to be ahead of us or allowing children to stare
to the point of causing us discomfort.
There are individuals who cross our path with consideration. Those of you who do this, I notice and I
remember and appreciate your gesture no
matter how humble. I remember the tall
and handsome twenty-something Asian man tripping over his own feet when Ronan
reached the door of McDonald's off Daniels before him. He could not help, but the intention is
enough for me. I remember the
sixty-something gentleman passing by during the wheelchair unloading at NDIC
asking how he could assist, this is a procedure that is difficult to explain,
but the desire to help warmed my heart.
Those small moments are few and far between, but they stay with me.
Robert, Burt, Heidi and Pick A Spot bring Riley around to pose for the camera.
Ronan waits patiently. Note: both boys have added to their tie dye collection.
Thursday
brought us back to Naples Equestrian Challenge for Riley's lesson. Currently, there are plenty of volunteers,
likely this is thanks to the high-schooler's fitting in their community service
hours over the summer which gave me the chance to snap some shots of Riley
aboard Pick A Spot.
Taking a moment from the barn, volunteers rest in the sliver of shade. July 28, 2011 4:30 pm.
Better go
now and do some more planning.
Anyone else
out there have appointment stories to share? I thank you for stopping by.
We are all
special... by Stacie Wiesenbaugh
