The qualities of new love at 66–It’s different

Grief to new love trilogy–Part II

Within five months of my wife Jean’s death it was clear my relationship with Candace Hadley was genuine.

Relationships at 66 are different than those at 26. My brief bout with loneliness was brutal for me. I had a wonderful 39-year marriage and it was obvious to me I loved loving and being loved. One of the things I missed most was laughing with a partner. Candace and I laugh together in silly, juvenile ways and with sophisticated humor only a few would appreciate. No matter how old we grow together, I pray the laughter will always remain.

I think one also wants a sense that they are needed and both Candace and I felt that with each other. Another thing that is crucial to a late life marriage, in my mind, is a shared sense of values. Candace and I quickly realized spirituality was important to us–we shared a passion for the writings of Richard Rohr. Politically, we are compatible without being carbon copies of each other. Our differences make things interesting. Very significantly, we have both dealt with cognitive development issues in our family. That particular shared experience is vital.

The other shared experience that is critical, in my mind, is the loss of a spouse. I know many widows or widowers build great relationships with divorced people. I think that would have been very difficult for me. My late wife, Jean, and Candace’s late husband, David, are integral players in our relationship. We talk about them often and we frequently share grief experiences and life experiences. Since Jean’s death is relatively recent, that has been especially indispensable to me. Candace has been an incredible grief coach and just the other night asked me: “How is your sadness?” She has been most attentive to making sure I tend my two gardens and grieve appropriately, all the while loving me and knowing that I love her. I still keep pictures of both Jean and Candace, in some cases side by side. And, Candace still proudly displays some of her husband’s excellent paintings. We are our history and neither of us wants to deny that.

A truly fascinating element of finding a new partner after long marriages is that you have to get used to a new set of expectations. I like to joke that after 39 years of marriage I damn well knew the rules, but now the rule book has totally changed! Things that didn’t matter suddenly are important and vice versa. Figuring out how to disagree, and even agree, can be a fascinating new adventure.

Adventure is the key lesson of new love at 66. It’s an exciting adventure in creating a new life of happiness. The adventure needs to be enjoyed, not over-analyzed.

NEXT: Grief to new love Trilogy Part III –Let them say what they want.

Fortitude comes from laughter and perspective

St. Joseph’s New Hope, my home Catholic parish in Minnesota, hosted a book reading and signing this summer for my book, Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance.

The event was my favorite book event so far. More than a 100 old friends, new acquaintances and the just curious turned out to hear me read and explain passages from the book. Just like the book, there was laughter, plenty of tears and, I hope, some wisdom. There were also questions. Some of those were probing and provocative.

A mother of a severely cognitive delayed child, who had obviously had a difficult trial raising her son, rose to tell me her challenge and then asked, “Where do you get your fortitude?” Nobody had ever asked me that question before and I had no glib answer. I briefly thought about fortitude as a gift from the universe, but that felt like a cheap, unhelpful answer.

Uncertain of exactly where I was heading I told the searching woman, “It starts with laughter.” I think that is a key message in my book. You always have the choice to cry but that brings down you and everyone around you. When you laugh the world grows bigger. There is suddenly more space for courage, grit and affection.  Some people have commented that some of our family humor was rude. Walk in those shoes, baby, and I will show you rude. The dictionary defines humor as “a comic, absurd, or incongruous quality causing amusement.” Another definition says humors are “peculiar features; oddities; quirks.” Any parent of a developmentally delayed or developmentally disabled child will tell you there are more “peculiar features, oddities and quirks” in raising such a child than there are Minnesota mosquitoes. Those oddities can drive you insane with frustration or you can laugh at them and make them your friend. For me and my family that laughter was a critical source of any fortitude we managed.

Then my answer wavered just a bit until I suddenly got the courage to tell that small crowd that, for me, fortitude is all about how I choose to look at life. In a way that I had never expressed before I talked about attitude.

I asked the group to let me make an illustrative assumption about their day. I said “let’s say 10 things happened to you today. I dare say seven of those were very good things. Nice happy moments of minor triumphs and joys.” I went on. “I will also guess that about three things that happened today were bad–everything from a flat tire to an overly-critical boss to a minor slight by a friend.”

I then observed that the difference among most of us is the choice we make about what to focus on at the end of our day. Are we obsessed with the three bad things or do we find solace and victory in those seven good things?

For me, celebrating those seven nice moments gives me the strength or, if you will, the fortitude, to power past the tough challenges and truly enjoy this earthly journey.

Happily, the woman nodded in agreement.

What if there were a magic pill that cured Down syndrome?

A friend of mine here at the Walter Cronkite School at Arizona State University sent me this thought-provoking story about the deaf subculture. She is very smart and obviously saw the moral and ethical disability conundrums that are wrapped up in a frighteningly untidy ball here.

The story discusses the controversy and cultural issues raised by the increasing availability of cochlear implants which many in the deaf community fear will destroy the deaf subculture. The story points out that many deaf people are passionate about their culture and many are critical of people who choose hearing over living a soundless life with sign language.

I really can’t discuss that phenomenon because I am not deaf nor do I have a deaf family member. I can’t imagine being unable to hear the sounds of the earth and the workplace, but most of us can’t imagine dealing with a different disability.

Where the debate inevitably takes me is to Down syndrome. In my book,  Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance I write in the acknowledgements section of the book: “I have no intention of entering the hot button arena of abortion, but I can say unequivocally that I believe our world would be an inferior place if there were no Down syndrome children. The pursuit of the perfect baby would deprive our world of real joys and triumphs.”

Believing that aborting all children with Down syndrome is wrong and would diminish our society is a ridiculously easy place to stand. People with Down syndrome, like my 35-year-old son Jason, do deeply enrich our world just as deaf people do. I ardently believe all diversity makes our world richer and gives it genuine texture that can be celebrated.

But, for argument’s sake, let’s say there was a pill that immediately fixed Down syndrome. And, what if, like the cochlear implant, there was some chance it wouldn’t work. Would I hang on to my diversity argument or would I move mountains to get that pill for Jason to allow him a chance to live a more normal life?

Again, for me, I’d step all over people to get Jason that pill and the “Down syndrome culture” be damned. Certainly our society would lose something important, but how could I possibly deny Jason all the joys that come with normal intelligence?

One of the arguments of people who oppose cochlear implants is that it implies deaf people need to be fixed and they resent that. That argument bothers me because a lot of us have twisted limbs, cancer or a score of other maladies that get “fixed.”

I cannot walk in anybody else’s shoes and I don’t have a deep understanding of the deaf subculture or cochlear implants so I will never criticize anyone in that community, but if I could fix Jason’s Down syndrome with a pill you would see nothing but a blur.

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

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

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