This past summer has been different for me. We spent some time in Virginia with my
parents, particularly spending time with my father, whose medical issues are
becoming more apparent as he gets older.
I also had the pleasure of having knee surgery to fix a problem that
started 30 years ago while playing high school football and finally resulted on
the knee giving out on me late this past spring. A result of both of these events was that I
had waaaaay too much time to sit and let my mind travel. So where did it go?
It went many places, but one place in particular that I
think some of you may find interesting.
That place was a consideration of how my outlook on life has changed
over the last 20 years and how different I am now from how I may have been had
our son not been born with disabilities.
What I find really interesting is that while my life would have probably
been a bit less stressful, it also would not be as rich or, frankly, as aware
of the world around me.
How? Starting out,
several things stick out most to me. I
would probably not be living in Florida.
I would not be working at this job, and would probably not have much
knowledge or involvement with deafness or with disabilities in general. But those are not, at least to me, the most
important differences. The most
important things are the ones that you cannot outwardly see.
First, I learned that life is not about instant
gratification. Life does not occur in
sprints, but in long marathons, where patience and perseverance is
required. Ian has his high school
diploma and is doing well in college, but there were many times when I came
close to despairing about the question of if we would ever get through public
school. Much of that came when Ian was
younger, and was still working through how he would deal with his disabilities. Now he is in college. He will take a couple of extra years to
complete that schooling, but right now he as a 2.85 and is marching
forward. The long view matters. Ian was not supposed to walk, but did at age
7. When he got to high school, he ran
track. He was not fast, but he ran. He loved it.
He also completed his Eagle Scout rank in Boy Scouts. Part of the rank advancement included hiking,
including a 20 miler. I thought it would
kill him, but he did it. Perseverance,
seeing the end goal, and learning to accept what comes and the time needed to
get to his goal. The long view… Ian has always seemed to have it. I have learned it.
I also have learned a lot about the concepts of bravery
and what I can deal with. It is a much
broader concept than many people see. People
always comment on how happy Ian is. He
doesn’t let his disabilities bother him.
Instead, he just does what he needs to do to accomplish whatever it is
that he is doing. Ian continues to work
at things – especially those that require very fine motor skills – when others
would have given up. He doesn’t
quit. He tries, tries again, and tries
again, all the while keeping not just a stiff upper lip, but a sense of
humor. When he sets his mind to
something, he usually manages to succeed.
One of the deacons in our church, a former career military man, tells me
often that he truly looks forward to seeing Ian on Sundays because he knows
that no matter how lousy his week may have been, he will be lightened and
encouraged by Ian’s joy in life. He also says he will be reminded that no
matter what happens, if Ian can keep pushing forward with his happy outlook on
life, with all the things Ian has had to deal with, then there is no reason for
him to let the world get to him. He
tells me that even with all the things he has seen in his life, Ian may be the
bravest individual he has ever met because Ian has had to deal with his
obstacles every single day in his life, and just keeps coming back for more. When I see people like Ian in schools or in
the world in general, you realize that Ian is not unique in his outlook or
desire to succeed. How do you not learn
personally from things like that? It
changes you, and changes you for the better I think.
I have also come to understand that there are things in
our lives far more important than money or power. I have made far more money earlier in my life
than I make now. I have also had far
more decision-making authority when I worked in other places. At one time I was making decisions for an
annual project budget of around $10 million.
Sounds great, right? Not
really. While I enjoyed that job, and
the company I worked for was a fantastic place to work, the truth was that it
was in computers and everything I did there would last about 10 years before
being replaced. It was initially very
hard for me when I left that job – a big loss of income, and a loss, in my
mind, of some of that alpha male status.
But thanks to Ian’s need for an education, I did not really have much of
a choice. The move to Florida led me
someplace I never really saw myself.
Here in Outreach. I don’t make
anywhere near the money I did in the private sector, I have no one reporting to
me, and I manage a part of my project that has a division of one. For many, and at one time, for me, I would
have considered it a step down. I’m sure
some do. I do not. You see, I found a job, and a group of
kindred souls who have a similar outlook to me. The job is something of a calling for all of
us. None of us will ever be financially
rich, but there is a whole different kind of wealth that carries greater weight
in the big scheme of things that all of us in this field own.
You see, we traffic in the currency of hope. We give people hope. Hope that those we work with can make things
work in a classroom for a student with special needs, or hope that maybe, no
matter how bad things may seem for a family, there may be a light at the end of
the tunnel that will allow some level of success for their child. I did a rough estimate of how many people I
have worked with in some fashion over the first eight years on this job. It came out to over 10,000 people…. And I am not unique. It is a calling for me, and for many of us
who work in this field. We earn a
currency that you cannot trade with or buy things with, but one that always
lets me hold my head up. I do not mind
getting out of bed in the morning to go to work. How many people in this day and age actually
can say that? And it would not have
happened had it not been for my son having disabilities, a need to learn all I
could about those disabilities, and an eventual need to move to Florida to get him
to a school where a kid who is deaf could get a good education.
Thanks to my son, I have rediscovered a sense of empathy
and a willingness to see other points of view.
I have talked about this before in other blogs, but one thing that
people who know Ian tell me how strong a sense of empathy he has for those who
are sick or hurting or infirm. He seems
to sense when someone is having troubles and will go out of his way to try and
help make them feel better. Seeing him
sit with his grandfather, who is in a decline due to strokes, for hours and
just hold his hand or be with him is not something you see in many 20 year olds
(or us older adults either). But it does
set an example that makes you reconsider what is truly important in our lives.
Thanks to Ian, I have also found a sense of wonder in the
world again that I think often gets lost in our daily adult routines and
pushing to succeed. My wife and I
believe strongly that learning is enhanced by actually seeing and touching
things you are learning about. We both
think that this is doubly important for children with disabilities. So we have made a point of trying to travel
whenever we can with Ian. The kid who is
deaf and has motor skill issues has done a lot of things – he has seen wolves
and grizzlies up close, he swam with dolphins, he has walked on the ocean bottom
using a diving helmet, he rides horses, he has seen a several volcanoes
eruption in person, and stood in the caldera of one volcano. He has walked the streets of a city destroyed
by an eruption, been to places where kings and queens lived, walked the beaches
and battlefields of Normandy, seen a how people live in other countries, saw
the aftermath of a terrorist attack in London (the day after), and has been
exposed to as much of the world as we possibly could do – intentionally or
otherwise. My son, the young man, wants
to see more. He wants to go places he
has never been. He understands the world
is a big, wonderful, and sometimes dangerous place, but full of interesting and
exciting things and people, and something he is a part of. It is an understanding I do not think he will
lose. Over the years, thanks to Ian, I
have re-learned this. It is like having
your eyes being reopened and seeing things again for the first time. This probably would not have happened had it
not been for Ian and his disabilities.
So, what is the point of my ramblings? The point is that, while I would not wish for
someone to have a disability, I also do not believe that having a disability
should be looked at as an unmitigated disaster for that person or for that
family. Instead, it can and often does,
open up doors for that person and their family that may not normally open. Perspective is important. When looking at the impact of a disability on
a person and family, while disabilities often do take some things away, it also
can create unique opportunities for a full and rich life for those willing to
look at things with a fresh perspective.
Hopefully, if you have a disability, or are in the family of a person
with a disability, you already understand what I’m talking about. If you do not understand, but are one of
these people, please give what I have written some thought. Maybe it will help you see things through a
different lens and be open to some new possibilities.
