Let a simple “I am sorry” suffice

At my wife Jean’s funeral, a long-time family friend who lost her mother three years ago, walked up to my daughter Tracy and said, “I know there is nothing I can say.”

That friend was so wise. She had been through it. She knew that well-meaning people have a great deal of difficulty saying the right thing to grieving family members. The grieving party simply wants to know you care. The last thing they want is advice, spiritual observations or explanations of why this horrible, terrible thing happened.

Death is so inexplicable, so profound and so disturbing for everyone that words become very complicated and fraught with danger. Some people are tempted to withdraw and avoid confronting the bereaved. That’s the wrong answer too.

I have found that a simple “I am very sorry,” is the most comforting thing I can hear. The people who run the risk of getting kicked in the shins are the nice folks who tell me how I feel. I have been told “you must be so devastated right now.” I am tempted to respond, “Actually I have been pretty good for the last hour, but you just screwed that up.”

Please don’t try to make yourself feel better by telling me what I am going through. You simply can’t imagine what it feels like. I knew in the last two weeks that Jean was going to die. Yet, I can honestly say I never imagined the reality of “dead.” It is simply overwhelming.

Without question the grieving party is carrying a lot of baggage from coping with that sudden reality, but the most sympathetic approach is to understand that baggage and simply express sorrow.

Disabilities do not come in one size fits all

I met a delightful 11-year-old Down syndrome child the other day. To my old eyes she is significantly outrunning Down syndrome stereotypes. She reads, reasons and is observant as a detective.

She is markedly different from my 35-year-old Down syndrome son Jason. Jason doesn’t read, can’t count his “monies” and can’t handle more than two concepts at a time. However, Jason has an incredible advantage over most of his peers in that he is incredibly savvy. Jason just “gets it” and is incredibly quick with funny comments and insights.

All of which reminds me again of something I think many  often forget: Down syndrome and all cognitively delayed persons are as varied in their abilities and interests as the rest of the population. We’d play heck defining normal intelligence and there is no such thing as a normal Down syndrome person. The range of intelligence is incredibly wide in any room of the general population just as it is in the cognitive disability community.

The other part of that stereotype which always frustrates me is that all Down syndrome people are cuddly, lovable and docile. I can barely contain my anger sometimes when I perceive, underline that word perceive, that DS kids are being treated as “pets.” I have found that just like the general population Jason has his moods and there are times he simply doesn’t fulfill those stereotypical expectations of cuddliness. There can be a little snarl to him. When I see that I celebrate his individuality.

We do a horrible disservice when we attach expectations to the disabled. That’s our baggage speaking and those judgments probably say more about us than the disabled person.

The innocence of the young

Amid the grief of this past summer, after the June 21 death of my wife, Jean, one of my most important emotional anchors was almost daily meetings with my two grandchildren Kayley, almost 11 and Collin, 8.

I sat drinking my coffee while they enjoyed smoothies and we explored life through their amazing lens. They played their video games a bit and then I’d call timeout for conversation. We talked about their favorite this or that and I told stories about the “old days” and they taught me how to play Minecraft. I found Minecraft a remarkable learning tool for youngsters their age. Many people fear this Generation Z will not be creative. Minecraft is the soul of creativity.

One day the conversation wandered to the fact that I was moving out of the apartment Jean and I rented even though we only spent about 11 weeks year in Minnesota. I told the kids that next summer I would stay in a Residence Inn.

I said, “You know guys, I have to be thinking about the time you two won’t want to have much to do with Grandpa in the summer.” Both Collin and Kayley looked at me as if I had a third eye in the middle of my head. They were more than incredulous and protested much. “That won’t happen Grandpa,” they said in unison.

The sweet young things have no clue about the hormones, rebellion and contrariness that will grip them in a few short years. Their parents, and I need to savor moments like that because I fear soon that will be a funny and fuzzy memory.

The problem is “onliness”

Some friends who have lost spouses talk about the overwhelming loneliness they face. I have certainly experienced that since my wife Jean’s death but there has been another bigger, more pervasive emotion for me. It’s “onliness.”

I doubt this is an original concept but onliness is bigger than loneliness. When you have been in a loving marriage for 39 years your entire operating context is “What is Jean doing now?” “I wonder if Jean is doing well now.” “I like this artist, I wonder if Jean would want to go to that concert?”

My thoughts on the weekend, our kids, retirement and even trivial things such as dinner, always revolved around Jean and me. Now that Jean is gone there is no one else to consider. It is only me. Only I can decide where I should live. Only I get to decide what I eat tonight. Only I decide when to pay bills and where I should invest.

I recently had a fairly routine medical procedure. The receptionist did her medical privacy spiel and then asked me, as such receptionists had done scores of times before, “Can we tell your medical information to anybody else?” At that moment I was singularly focused on Jean and did not give my kids the credit they deserved. All I could think about was that I didn’t want the friend who drove me to have that information. Jean was not there to share things with.

Daily, when I look over my shoulder for affirmation or comfort or even disapproval, there is no one there. It is only me, and I hate it. That is onliness and for me it is far worse than loneliness.

Excerpted from the coming book Some People Even Take them Home

Seeking a broader canvas

This is something new.

For the past 8 years I have sporadically written a blog called McGuire on Media. That name was suggested by my dear friend and former colleague, Pam Fine. I will continue that blog on a weekly or so basis but for a couple of reasons I have decided to branch out. I want and need a broader canvas.

People close to me know that my wife of 39 years, Jean Fannin McGuire, died on June 21. That has given me a lot more to think about and a lot more time to write. It has also focused my attentions on grief. Some other people know that I hope to publish a book on Amazon in the next few months called Some People Take Them Home, A disabled dad, a Down syndrome son, and our journey to acceptance. So disability is very much on my mind.

When I was the top editor in Ypsilanti Mi. and Lakeland Fla. very early in my career I wrote page one blurbs about everyday life. In Lakeland it was called Getting to Know Polk. I observed daily oddities and quirks in life in short blurbs. The pieces were often funny and revealing about the human condition.

I want to write about all those things and I want to drive traffic to my new website, Somepeopleeventakethemhome.com which will promote my book.

Leveraging Pam Fine’s first instinct, this new blog will be called McGuire on life, disability and grief. That is one really broad canvas, but I hope the glue for readers is an honest, heartfelt expression of provocative and inspiring ideas on essential parts of the human condition.

I plan on using some book excerpts, reacting to news and exploring some unanswerable dilemmas to make readers laugh, cry and think. That, in my view, has always been the most basic journalistic calling.

I hope you will come along for the ride and tell your friends on social media. This blog will only affect people if you help me make it viral.