Alternate Universes

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.