“Some People Even Take Them Home” is as much about the reader as the author

A long-time friend wrote me a note over the weekend after reading my new book, Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance.

He wrote: “At first I thought it was a book mostly about how Tim sees the world. Then Jason, then the “fambly.” Then it started to be me thinking about how I saw the world. It grabbed me.” That email was not the first of its kind I had received. One of the Amazon book reviewers wrote, “When the last word is read, one is likely to lay down the book (or Kindle reader) and feel inspired, simply, to make more of oneself.” Another reader wrote, “It was as if I was living the experiences.”

This is my first book, but I am pretty sure that is the goal of every writer: I want to make my story your story.

From the day in 2012 when I got fresh resolve to finish a book I first started in 1993 I believed my story was unique to me, but had a universality with which people would be able to identify.

That kick start came in February of 2012, Jean and I were sitting outside a coffee shop enjoying one of the first Arizona days of the New Year in the high 70’s. I was startled when I saw a polite e-mail on my phone asking for help. A young couple was contemplating how to deal with a unborn Down syndrome Child.

They had found me through a blog post I had written two years before on Down syndrome. Since Jean and I never missed a chance to talk about Down syndrome with prospective parents, especially parents who haven’t decided if they are going to keep the child, we jumped at the opportunity. While we deeply respect any and all choices available, we are, after all, advocates for “taking them home.”

During the 40-minute conversation, the couple immediately established they were considering going through the birth process and then offering the child for adoption. We came to enjoy and respect the couple. They were genuinely smart people, yet their fears about raising a Down syndrome child were visceral and even a bit primitive. They feared the challenge of raising a “vegetable.” That made both Jean and I laugh sympathetically. Jason is obviously no vegetable. We told the couple some of the funny stories I tell in the book.

Then, one day in June, 2012, I received this email from the father:

“Very long story short: after much discussion we decided nobody can raise our son better than we can. In 40 years I’ll write you and let you know how it all turned out.

I was certain the father is correct, nobody can raise their baby as well as they can and will. But that experience with a couple seeking answers sent me back to the manuscript I had abandoned nine years earlier with new fervor. I suddenly saw with great clarity how our story might affect people in important ways.

The book is the story of Tim, Jason and Jean, but I believe that my friend saw what most readers will see. It is a book about all of us. It is about every parent, every struggle and every cataclysmic pain in our lives. It’s about how we deal with those seminal, sometimes tragic events and keep on moving forward, one step at a time.

“Happiness” wants to be my friend and some people actually fall for it

I received this email on Sunday.

Hello
My name is Miss Happiness, I read your profile today in (facebook) and it was very good for
me. i feel you are the only one, I am interested to be a friend
first.please contact me
Happiness.

Now that note, of course, spurred several bawdy jokes with friends about Miss Happiness and one of my more erudite friends took serious issue with the peculiar brand of “Happiness” grammar. I suppose I should have been relieved that Happiness wants to take it slow.

After the shenanigans I became pretty melancholy as I thought about the many men who will answer a shameful con like that one. I started to feel bad for the men who are so lonely and so desperate they would look past all the red flags and make contact with Happiness, an act that would inevitably lead to Miss Sadness, if you will.

There is another painful fact about this scam, and I am not reluctant to label it what it is, a pure unadulterated scam. You see I actually believe Miss Happiness or a sophisticated algorithm did, in fact, read my Facebook page. And, I would bet the ranch and all the cattle, I know what part of my profile triggered that email.

About four months ago when I was in the depth of my grief over the death of my wife, Jean, I changed my relationship status to widower. I remember well I was particularly sad that day and I was trying to come to grips with the hard reality that now I was alone. I changed the status on a bit of a whim, almost as an experiment in grief to see what it felt like to say and write the word widower.

Since I made that change I get four or five “bimbo” friend requests or emails a month. I am convinced the computer bad guys are trolling Facebook profiles to search for lonely widowers who might bite on any scam that includes a pretty, sexy woman. Thankfully I am savvy enough to know that those alluring pictures were probably sent by some clown named Bruce with several ugly tattoos. But what about those men who don’t know that.

There may be no limit to how much they get victimized by “Happiness” and her merry brand of internet scammers. And, that really ticks me off.

Facebook and Twitter are great. I love social media, but vulnerable people need to be vigilant and realize that not everybody is going to be sympathetic to your grief. Some jerks want to exploit it.

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 mystery of Jason–5 and 35 at the same time

One of the main themes of my book Some People Even Take Them Home,” A Disabled Dad, A Down syndrome Son and Our Journey to Acceptance is that my Down syndrome son, Jason, is five years-old and 35 at the same time.

Sometimes he is a scared, befuddled and overwhelmed child and at other times Jason is a man of the world with wise insight largely fueled by television and movies. When he visited Arizona along with his siblings over Christmas the five-year-old was on full display.

Within minutes of arriving, Jason arranged the five stuffed toys he brought from his group home in single file on his bed against the wall. He does so unabashedly but please do not call the toys dolls or toys. That insults the 35 year-old Jason who maintains a self image of an adult.

The adult Jason expects the privileges of an adult, but is absolutely stunned when you are unhappy that he has mixed his clean underwear with dirty underwear. A five-year-old just can’t see why such niceties matter.

On his trip his siblings got a delicious look at Jason’s self image. As we discussed the book somebody brought up the far-fetched notion of a movie about the book. When Jason’s younger brother, Jeff, asked who Jason wanted to play him in the movie, Jason never paused. “The Rock,” he declared with no hint of irony.

The Rock, or Dwayne Johnson, is a muscled wrestler and actor who was once a defensive tackle in football. The similarity between Jason and The Rock go no further than the fact they are both males. That does not faze Jason in the least because a five-year-old wants what a five-year-old wants.

Logic and realism come to us as we grow older, as we mature and as we gradually come top grips with what we are and what we are not. Jason has never been able to make that journey. He is sweetly funny about his state, but his lack of recognition is bitterly disappointing and frustrating too.

That is the debilitating reality of a cognitive disability.

Invisible disabilities demand our understanding

I often think Moses dropped a Commandment as he descended from the mountain. Thou must not judge other people by their appearances should have been that 11th Commandment.

I learn practically every day that I shouldn’t “judge a book by its cover” and come to rash, unfounded conclusions about people simply based on their appearances. Yet it is a sin I commit almost hourly even though the last thing I want people to do is to come to conclusions about me based on my appearance.

And yet appearances only tell half the story in the world of disabilities. It is is incredibly obvious that my limbs are twisted and you don’t have to be very astute to see that my son Jason has Down syndrome. But recently the other side of disabilities, the invisible side, has entered my consciousness and caused me some real concern about my own insensitivity.

Invisible disabilities require us to be sensitive even though we may not immediately recognize them. I developed a close friendship with a man with tinnitus, ringing in the ear and just yesterday I found that another friend suffers with it too.  Several months ago I read this long story about misophonia, the hatred of sounds. And now a celebrity, Kelly Ripa, has said she suffers from that disease which strikes me as a hateful one.

Just this week I encountered a well-functioning student who deals with a condition that was absolutely new to me called Synaesthesia.  “It is a phenomenon in which the stimulation of a sense can activate other senses. Synaesthetes perceive their environment a little differently, than other people: Music can be colored, letters and figures can be associated with genders and personality types, and forms can have a taste.”

My student associates colors with letters. I was stunned to hear about such a thing but the student was quick to tell me she does not consider it a disability. I admire that attitude but I tend to consider anything I wouldn’t want to have as a disability.

When I hear about the invisible challenges I am forced to ponder how many unfair conclusions I have made about people because I did not realize that their behavior was caused by an invisible disability. It reminds me that I have to cut everyone slack and assume the best about them.

There is much debate about who said it but I have always been smitten with the quote: “Be kind, everyone is fighting a hard battle.”

Those are rich, guiding words for every day encounters with people who may be suffering in ways we simply can’t see.

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

When someone tells you they’re having chemo they have told you nothing

Here is one more post on cancer stimulated by my friend Steve Buttry.

Between his Twitter account @stevebuttry and his Caring Bridge entries Steve is, as I said on his Caring Bridge account, “the patron saint of transparency.”

Steve is convinced he can help people by explaining his struggle. Obviously, as someone who has just written a candid book called “Some People Even Take Them Home:” A Disabled Dad, a Down syndrome Son and Our Journey to Acceptance, I also believe the power of our personal stories are the best teachers.

This week Steve wrote a fascinating post on the drugs that fight the drugs that fight the cancer. The post reminded me of a major truth I learned during my late wife Jean’s encounter with cancer: When someone tells you they are getting chemo, they have told you nothing.

I share this truth in the hope it will educate and edify friends and loved ones. Do not assume anything when your friend tells you they are getting chemo.

Jean and I used to sit in a chemo infusion lab for six to seven hours while she received two really tough drugs and an antidote three times a month. Right next to us would be a man who was getting thirty straight days of chemo and next to him would be a woman who was getting a monthly treatment. And then there are people like Steve who have in-patient chemo treatment.

The chemo drugs are very different too in their side effects and their potency. Some people suffer intense pain and discomfort. Others find themselves consumed in a battle between hope and despair. Not to put too fine a point on it, but chemo sucks.

When Jean and I started her chemotherapy regimen I admit I naively believed the process was much gentler than it turned out to be for her. I guess I had a false faith in how far the science of chemotherapy had come.

I lost Jean despite the chemo and I am sure that is why when I hear someone is undergoing the treatment a little piece of my soul chips away. I now have an empathy that comes from being the spouse of a chemo patient who couldn’t defy the odds. Of course, that makes me sad, but even more important to my personal character is now I can truly feel for the chemo patient.

My only point here is when you hear those words “I have to have chemo,” don’t assume a walk in the park, but don’t assume a horror show either. Be gentle in your assumptions, cautious with your questions, complete in your empathy and pray like hell.