Koan’s Story: Unwelcome Advice

A couple of months back, there was a silly Facebook test that came across my timeline.  It asked you to identify an ambiguous color and depending on your response (supposedly), it would tell you your base disposition (optimist, pessimist, etc…).  I don’t normally take that kind of click bait, but I bit this time.  It was an interesting question and the quiz didn’t take much time. My response came back as an optimist.  I didn’t find that surprising.  I see myself that way.  I shared this finding with Jeri and several friends at a social gathering.  They all smiled, shook their heads, and said, “No.  That’s not you.  You’re a realist.”  After a lengthy debate, we all agreed that I’m not blindly optimistic.  I’ll admit, I don’t instantly look for the positives when I’ve been dealt a reverse.  I can even be very negative in the short term.  But, I always find a way to eventually find the good in just about any situation.  I don’t like the realist label.  Like the pessimist label, that implies victim thinking — a resignation of one’s self to the situation.  I hate to do this, but I’m going to quote Richard Bach — no not Jonathan Livingston Seagull — worse!  Illusions.  I’m embarrassed to admit I’ve read both.   But, I do believe truth is truth.  In that book, Bach wrote something to the effect that, “all problems come bearing gifts in their hands.”  I really believe this.  Sometimes, it just takes me a while to see the gift and embrace it.

The winter of 2008 was not a lot easier than the fall of 2007.  But, it was a different kind of difficult.  From the time Koan first went into the hospital in mid-September until the time he was last hospitalized in November, Jeri and were not really thinking about big picture stuff.  Those three months in the fall were a shock to the system.  We were just looking to get through each day as it came — pure survival mode.  It was Maslow’s Hierarchy of Needs sort of deal.  Jeri and I were so preoccupied with the seizures, that we could not think about what all of this might mean down the road.

But, by January of 2008, the seizures had stopped.  While we still worried about them coming back,  we soon found ourselves settling into a routine.  All of the doctors and specialist had no idea if Koan would go on a normal developmental trajectory or if he would experience delays.  Nearly all of them said the same thing, “You’ll know when he’s about a year old…”  So, these next few months were pretty tough.  We hoped for the best and starting thinking about bad scenarios.  We obsessed over everything he did or did not do.  As these weeks began to stretch into months, I started to reflect on a couple of pieces of advice we got while Koan was in the NICU.  

During our time in the NICU, Deb Streff came up to see us frequently.  Jeri and Deb taught together for several years. She and her husband Steve have an adult child with disabilities, JR.  Deb knew early on what was going to happen with Koan — long before either Jeri or I wanted to admit it to ourselves.  On one visit she said something that I’ve reflected on many times since.  She said, “It’s going to be ok. Take some time to grieve for the child you thought you were going to have.  Then love the child you have.”  

Before Jeri worked with Deb, I knew of the Streffs and their family.  Steve taught at the high school I attended.  And, a close friend of mine when I was growing up, Scott Emerson, would periodically babysit for the Streffs (his parents knew the Streffs socially).  So, I would hear bits and pieces about his time with JR.  When I was younger, I didn’t know any disabled people.  JR Streff was the only disabled person I really knew about.  I remember thinking how different and difficult it must be in the Streff house – – caring for someone who moved so slowly and had such a limited vocabulary.  I couldn’t imagine living with or taking care of someone like that.  It seemed like such a burden.

So, Deb intimated that Koan was disabled (in my mind like JR) less than a month after he was born, I wanted nothing of it.  I didn’t get angry, but I did not want to have that type of conversation.  I felt like we knew so little about Koan.  I also mistakenly thought that if I openly acknowledged the possibility of a disability, I was setting lower expectations for him.  Of course, I look back on it now and I realize how high-functioning JR really is.  He’s mobile, he can communicate verbally.  He can do so many more things independently than Koan can.  Envious isn’t the right word, but I want what he can do for Koan.  This is just a concrete example of how much my perspective has changed since Koan came into our lives.

Deb’s advice, even though I did not want to hear it at the time, was so wise and profound.  Once we got out of survival mode, I did reflect on her words and found the meaning in them.  I’m so thankful now that she was brave and said that to us then. It was natural and inevitable that we would feel loss and sadness at that time.  But, it was so important to unconditionally love Koan for who he was, too.   I still reflect her words to this day.  Occasionally, I still have some sad moments.   Sometimes I look out the window and see children in our neighborhood riding bikes, playing baseball, or jumping around on a swing set — all things Koan can’t do right now.  I wonder what might have been.  But, I tell myself, it’s ok to be sad sometimes.  The trade offs we get for Koan as he is are pretty awesome.  

As I was returning to work after Koan was discharged from the NICU, I got some other words of wisdom from one of my co-works, Charlie Braun.  Charlie was my first hire at Prairie.  He’s a really interesting and eclectic person — a mix of technical/analytical and artistic/holistic: industry certified computer technician, painter, musician, etc…  Before Charlie worked at Prairie, he had spent time with the ARC as a respite worker.  And, as he was growing up his family cared for several foster children — many with disabilities.  So, he had a lot of experience with disabled people. As I was settling back into my work routine, I was relating to Charlie the worries I had about Koan.  At that time, I didn’t know how disabled he would be, but I had a pretty good idea that we were going to see some types of delays.  

In one of these conversations, Charlie said something that, again, I did not like or want to hear.  But, it was deeply insightful.  He said, “You are going to grow to love his disabilities.”  What he meant by that was pretty simple — these differences will define who he is and will be overt characteristics that we would (eventually) find endearing rather than burdensome.  At the time, I could not possibly imagine loving something that was going to set my child apart and make his life more difficult.  That seemed like accepting a lower standard for him or a lowering of expectations.  I tried to reject the idea. But, of course, Charlie was totally right.  It’s impossible to not love all of Koan.

The little foibles and idiosyncrasies make him who he is.   I fervently wish that Koan had more skills that would make him more independent — walking, talking, feeding, etc…  I love the way he tells us stories with no words, but lots of sounds –his squeals of delight, his shouts of outrage when he doesn’t get what he wants… The way he raises his arms above his head and shakes them when he’s happy and excited — think Kermit the Frog for this.   I also know, having raised another “developmentally on-target” boy, that he would not smile nearly as much at 10 years old.   And, again, while I certainly want more for him, I do so love all of these little traits that make him special.  As I’ve said many times before, I would not wish his condition on anyone, but I would not trade him or change him.

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