The small-mindedness of people continues to amaze me

My Down syndrome son Jason was not mainstreamed in high school, but we did all we could to make his high school experience as “normal” as possible. He was mainstreamed in religion classes where he met a lot of the boys he encountered in high school. His mother and my late wife, Jean, always encouraged Jason to “high-five” his friends rather than hug them to make him like the other guys. In that same quest to make him “like the other guys,” we also bought him a high school Varsity jacket so he could be “cool.”

The jacket had his name, his graduation year, 1999 on the sleeve and the school’s mascot name on the back. I vaguely remember there was some discussion about getting Jason a letter but we decided the jacket was plenty and he hadn’t really earned a letter. But, I will tell you that my attitude would have changed it somebody had said Jason could not wear a letter because somebody else said so.

I have been having an ongoing discussion recently with a close friend about her contention that most people are basically good if you give them a chance. I desperately want to believe that, but I am too often encountering people who shock me with their smallness and meanness.

The cause of my most recent ire is this story out of Wichita. A Wichita woman is telling news media that the high school principal ordered her Down syndrome son to remove the Varsity letter sports letter from his sports jacket. The principal without appropriate shame confirms that his teachers told the mother they did not want the boy wearing a letter he did not earn. The mother claims the action was instigated by another parent of a varsity athlete. This is the dictionary definition of small and mean.

What in our society has led people to think that telling the Down syndrome boy not to wear his letter because he didn’t earn it, is a good idea? Was nobody around to say, “you know this is really dumb and a lot of people are going to hate us for this?” It appears shame has taken a powder. Apparently people are just not concerned these days about appearing small and mean. One would hate to think that selfishness has become so dominant in our society that people can’t see beyond their own interests.

I sort of get the fact that letters should be earned, that was my instinct 16 years ago. However, I bemoan the lack of empathy in our society that does not allow people to cut a Down syndrome high school boy a little slack. Who really gets harmed if special education students are allowed to wear letters? And don’t tell me that if you allow one non-athlete to wear a letter then everybody should be able to wear one. That is antiquated everybody-has-to-be-equal thinking that is simply the work of narrow minds.

Can’t we all just lighten up and get along?

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

My 66th birthday, and the first without my late wife, looked quite different

I turned 66 Tuesday.

That modest language seems appropriate rather than exuberant verbs like celebrated. And yet, nothing about birthday 66 seemed unimportant or trivial.

For the last several years I have been complacent about birthdays. “It’s just another day, ” was my frequent refrain. I said that once Tuesday and it felt false, even phony. I regretted it the instant it escaped my mouth because it wasn’t true.

This birthday was a big deal but not for its opportunity to drink, party and make a special fool of myself as I did many more times than I should have on my life’s journey. This birthday made a special mark on me because gratitude took its appropriate place after last year’s death of my wife Jean.

As I told several well-wishers Tuesday, the point now is to keep having more birthdays. The importance of appreciating the gift of life becomes far clearer as I enter what I hope are the last 20 years of my life. As one birthday greeter said, “Happy birthday, Tim. Every year is a gift.” That is so true and such a vital thing to remember. I wish it was a perspective I could say I have had all my life, but I’d be a liar. It has taken age, wisdom and a little fear of death to help me realize that sense of gift.

It is definitely true, though, that the realization of life as a gift has been informed and given urgency by Jean’s death. Every time I said “the key is to keep having them,” I thought of Jean and the fact that she will never have another. I didn’t tear up every time I said that, but I do think it has strengthened my resolve to live my life more fully and with more gratitude.

Wednesday morning a woman who desperately wanted a copy of my book offered to pay for it. She can’t afford it and I can, so giving her the copy with a warm inscription was really pretty small potatoes when it comes to kind acts. But, the joy on the woman’s face and her enthusiastic and genuine promise to “start reading it right away,” made my day. It also reminded me that brightening people’s lives and doing kind acts every day is a crucial way to recognize the blessing and gift of each day we draw breath.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

Media interviews force me to articulate new ideas about Jason

Perhaps surprisingly, doing media interviews for my book, Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance usually leads me to new thoughts and ideas.

I found the interviewer for this piece published last week, particularly insightful. She wondered what I would tell people who were considering whether to keep a Down syndrome child. That is an incredibly personal decision and I could not presume to understand another persons issues, values and needs.

I did tell the reporter that I was profoundly uncomfortable when people used the argument that “Down syndrome people are so cute and lovable.” I told her I found that profoundly derogatory.

As I reflected on the question, I think I articulated a much larger truth. Jason has, without question, made the world a better place.

Now, I cannot say that was a new discovery. In fact, it is a major theme of the book. But the universality of that struck me as I talked to the reporter.

The meaning of life is way too big a subject for this modest blog, but I think most of us hunger to, in some small or big way, leave the world a better place. I find it a primal drive. Most of us want to do something that improves people or things in this raggedy world.

Jason could never articulate that for himself. But, in fact, in thousands of ways, big and small, Jason makes the world better every day.

His smile can change a room. His silly jokes warm hearts. His care and concern for others are sweet examples of what loving our neighbor really should mean. I tell countless stories in the book about how he has affected scores of people.

All the lives he has touched in his 35 years constitute a legacy many of us would be extremely proud to call our own. I shudder to think of the laughs, smiles and kindnesses that would be missing from so many lives if Jason wasn’t drawing breath. The world is indeed a better place because Jason walks among us. And, my world is immeasurably better.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

St. Patrick’s Day was a watershed day on the journey

St. Patrick’s Day 2015 will go down as a watershed day on my journey.

Much to my dismay I could not find anything green or Irish to wear this morning. As I frantically searched, I fondly remembered that my late wife Jean used to order me a snappy green boutonniere every March 17th when I was working at the Minneapolis Star Tribune.

As I reflected, a deep joy came over me as I remembered that typically sweet, loving gesture Jean made every year. It was vintage Jean. It was kind, imaginative and full of love. Jean always heard a different drummer and came up with cute, unique expressions of affection for everyone in the family. Her creativity made loving her a special adventure

It was a wonderfully delightful memory that I savored for several minutes.

And, that’s the watershed part.

That delightful memory triggered deep love, gratitude and affection instead of the grief it would have provoked just a few months ago. This time I savored. I didn’t sob. I didn’t tear up. The memory wasn’t full of regret and sadness.

I celebrated. Nine months after Jean’s death I have reached a point where memories are sweet celebrations of love and not debilitating moments of grief and sorrow.

I immediately went to the florist to buy a green boutonniere. Unsurprisingly, you had to have the foresight to order it in advance as Jean always did so thoughtfully.

So if you see me today you will not see a green boutonniere on my lapel, but I assure you it’s there on my heart. And, I am smiling, not crying. The journey goes on.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

O-L-D is all about perspective and gratitude

As I struggled to sleep Sunday night, I realized that in a space of four days I had at least five complaint-oriented conversations about the aches, pains and indignities of being over 60.

One woman complained the she just couldn’t move boxes and clean and paint like she used to do. She was downright angry her body was failing her. Another group of women joked as they complained. Another man interrupted a conversation I was having with another woman about how we were falling apart, by grabbing a piece of paper and writing O-L-D on it.

But the guy who got me thinking deeply about this whole thing was a man I’ve known for several years. I ran into him in a coffee shop Sunday. We swapped our complaints, pains and hurts until he wisely said “at least we’re this side of the dirt.”

That pulled me up short. My late wife Jean and scores of other people I knew well can’t gripe and complain about hurts and pains because they are gone. I have the gift of life and all my aches should be gifts, not trials.

I know I quote too many country music lyrics in these blog posts but Saturday I heard these lyrics from a Highwaymen song from 20 years ago. The song was written by the late Stephen Bruton:

I am what I am,
‘Cause I ain’t what I used to be.
‘Cause it is what it is,
But it ain’t what it used to be.

It’s silly to keep comparing ourselves to younger versions of our selves. Those days are gone. It is what is, even if it’s not what it used to be. I may not like it, but I need to embrace it as reality.

It gets me back to my old friend gratitude. Rather than focusing on those hurts and aches and the hardships I need to be grateful for what I have because a lot of folks don’t have anything at all.

McGuire on Life, Disability and Grief will take a spring Break for the next two weeks or so, Posts will continue around March 17.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance