Amy Silverman’s “My Heart Can’t Even Believe It” is a very special book.

When I read My Heart Can’t Even Believe It, A Story of Science, Love and Down Syndrome by Amy Silverman, it was the first hard copy book I had read in at least two years. My commitment to reading books on Kindle cost me several months of insight and understanding I would have gained from this special book.

Amy Silverman has written the book every family member, teacher or school administrator who knows a child with Down syndrome must read. I gave a copy to my daughter, a middle school special education teacher more as a work assignment than as a present. The book, is flat out, the best documentary I have ever read on how Down syndrome affects a family.

Yet, the powerful, captivating book is so much more than that. It is a carefully researched book, but that research is always done in the context of a search for a better life for the author’s daughter born with Down syndrome, Sophie, and other family members.

I have never seen the interactions with a school system, the search for  a link with Alzheimer’s Disease and Down syndrome, or the ethics of searching for a “magic pill” to fix Down syndrome explored with this kind of intensity and effectiveness.  This book is both intellectual and passionately heartfelt by a loving mother. That is one difficult trick.

Amy Silverman has grit. I know her quite well and she takes no prisoners. The book carries an “attitude” and the F-word can be jarring, although effective. It also reveals a mom who hurts, cries and hopes impossible dreams. One would do this book a disservice by calling it a memoir. It is too well-researched and educational for that moniker. It is more a passionate first-person study of the intersection between heartbreaking experience and tough-as-nails journalism. And the damn thing can be funny. For example, Amy’s dogged pursuit of why people with Down syndrome don’t have curly hair pops up throughout the book and had me laughing amid my tears.

Let me address the elephant in the metaphorical room. In December of 2014  I juxtaposed my own physical disability with my son Jason’s experiences with Down syndrome in what was clearly a memoir called Some People Even Take Them Home. The two books are as different as a whale and a lion. Oh sure, they are both about parents coping with children with Down syndrome. Both parents fall on the smart-ass side of the scale and both parents are straight ahead people when it comes to coping with challenges. But that’s about it for similarities.

The biggest difference in the two books  is about 22 IQ points–the difference between Sophie’s higher IQ and Jason’s. That means a whole different set of challenges socially, educationally and in expectations. Sophie can read. Jason can’t. Sophie can be mainstreamed and Jason never achieved that.  Those key differences make Sophie’s life far richer, but much more complicated, even messy. Amy had to navigate school issues, drama class exclusion and segregated cheerleading in ways I never did. It is in her tales of exactly those kind of day-to-day problems that the richness of Amy’s book emerges.

The other clear difference in the book is that while I chose the 50,ooo foot memory approach, Amy chose to buttress many of her experiences with solid research. Her research is outstanding. Throughout the book I found my self saying, “Really?  I didn’t know that.” The most profound discovery Amy led me to is an incredibly disturbing one. She explores the links between Down syndrome and Alzheimer’s in ways I have not previously understood. If her numbers are correct we have much to worry about the future of our Down syndrome children. Jason is probably not going to be happy with the way I scrutinize his memory and other actions from this day forward.

I am sorry I delayed reading Amy’s tremendous book, but now the least I can do is heartily, unconditionally recommend it to others.  This is one damn important book.

 

Tim J. McGuire is the author of “Some People Even Take Them Home.”

 

Text of Tim McGuire’s Convocation speech to Cronkite School class of 2016

Here, for the sake of posterity and easy reference is the actual text of my Convocation Speech to the Cronkite School’s class of 2016. The video of the speech can be found  here.

 

Thank you for that delightful introduction Dean Callahan.

Students, parents, spouses, relatives, friends and faculty.

I am incredibly grateful for being invited to the podium tonight.

The class of 2016 is among my all-time favorites at the Cronkite School. There is a boatload of talent in this class. 

“One day Alice came to a fork in the road and saw a Cheshire cat in a tree.  “Which road do I take,” she asked.

His response was a question, “Where do you want to go?”

I don’t know,” Alice said.

The cat responded, “Then it doesn’t matter.”  

I had written a convocation speech about a bunch of life lessons, but then a number of personal encounters began speaking to me, until one day I came across Lewis Carroll’s profound insight about the fork in the road.

A few weeks ago an undergrad sat in my office and asked me if I thought an MBA was a good idea for him. Without hesitation I asked, “Do you want to be a businessman?”

The young man got the old “deer in the headlights” look and said he was unsure. He hadn’t really thought of that. People had told him an MBA could lead to a very secure and stable life.

I feared the young man was ready to ignore his own personal hopes and dreams, and pursue a path he thought would make others happy.

Suddenly I felt like the Cheshire cat and it didn’t matter to Alice what she did. I desperately wanted the young man to focus on what he WANTS  to do, not on what somebody THINKS he should do.

Understand that our life on this blue marble is short, too damned short to spend it doing stuff we are not passionate about.

You are on the precipice of a new life. If you wish, you may focus on the prudent and the stable. You may make the secure and safe route your refuge.

But please, please don’t.

What do you want to do more than anything in the world? What do you dream of doing that would make you incredibly happy?

Tonight, I want to exhort you to pursue your dream.  Dream big! Aim for the impossible. Start that company. Do something incredibly noble for mankind. Change the world. Develop that zany wild idea. Move to that fascinating place. Go big. Go really BIG.

The only way to go really big is by taking risks. No, don’t take risks by texting while walking across First Street, and not by drinking every beer for sale on Mill Avenue. I am talking about life risks that bounce you out of the comfortable. I am talking about taking risks where there are no guarantees of success and even huge possibilities that you won’t meet your goal.

A few weeks ago in my office, I delivered this same message to one of tonight’s graduates. He looked at me with lots of skepticism and said, “What if I fail?”

Then you fail. And you pick yourself up and you take some more swings. That’s the way life works.

Life is trial and error. What we call failure is the father of scores of inventions and countless success stories. Either Cinderella or Babe Ruth, really, both are credited, said  “Never let the fear of striking out keep you from playing the game”

If you do strike out simply pick yourself up, be smarter, and go again!

In February I had a conversation with a wonderful student in this class. He has a REALLY big dream. Only a very few Americans will achieve his dream. He will need genuine skill, some damn good luck and a ton of determination.

With all the passion I could muster, I said, “go for it, Ace.” I told him to take a 10 year shot at achieving his goal. I told him to believe in himself and don’t accept those people who try to beat him down and diminish him. If he doesn’t achieve his goal in 10 years he will be richer for trying and his next steps will be much clearer.

A few weeks later I talked to another wonderful student in this class who has decided she wants to get a job overseas. She is determined to live out her adventure and is networking like crazy to find a job worthy of her considerable Cronkite skills.

I burst with pride over her courage, her inventiveness and her commitment. She will do great things because she thinks big and smart. She is not being foolish about any of this. Cleverness underlies her risk-taking.

But then I asked the killer question: “What do your folks think about this?” She smiled a smile as big as all outdoors, and said ‘my dad is incredibly excited and my mom wishes I’d stay home.”

But then she quickly added, “but Mom knows it’s my decision and she is coaching herself to be okay with it.”

God bless both Mom and Dad. They are both standing very tall in my estimation.

A few weeks ago I talked with a well-educated, successful man who told me about his son who plays football at a small college. The son’s dream is to be a football coach. My friend knows about the concussion studies and the dangers of football and he dearly wishes his son was not playing football. He would have loved to have just said no!

Then the man looked at me and shrugged and said “but it’s the boy’s dream.” That is parental courage!

Parents, embrace your student’s dream. Push them to dare to be bold. Encourage those ideas you might think are really crazy. Be proud that you raised students who are independent, bold and adventurous. Don’t look down your nose at their dream, lock onto their dream enthusiastically.

Students, tonight you become adults, your life is yours to lead. Your success, your failure is on you and only you. It’s not mommy or daddy’s fault if you don’t soar. It is yours. The richness and joy you find in life is about you and your commitment to transcend all the challenges.

Let me share with you a few lines from a wonderful poem by Pablo Neruda

You start dying slowly
If you do not change your life when you are not satisfied with your job, or with your love,
If you do not risk what is safe for the uncertain,
If you do not go after a dream,
If you do not allow yourself,
At least once in your lifetime,
To run away from sensible advice

Don’t worry about being sensible.  Don’t worry about what others think you ought to do. Don’t be modest in your goals. Don’t hide your passion. Change the world. Take risks and go really big.

I am convinced that if you dream big and push to meet those dreams and if you understand that you and only you are responsible and accountable for making a good life, then one day you will be able to stand back and declare, TOUCHDOWN!

Most readers will ignore this advice but clean out your “stuff” now

I suspect I have never written a blog post or column that will be as roundly ignored as this one will be. Oh, the typical number of readers will read this post, but very few people will follow my suggested action. They have been procrastinating before today. I fully expect that procrastination to continue tomorrow.

So, there I was standing in front of an elevator at work with two good friends. We were discussing the fact that I had closed on the sale of my old house. One of the women asked me about moving out. Posing this question to me is like dangling raw meat in front of a starving bear. Moving out of two domiciles over a year’s time has been torture. And in complete truth, my now-wife Candace and her close friend Cathy, my close friend Frank, my daughter Tracy and my brothers, David and Marty, did far more of the actual work than I did.

My major job was to make the tough, emotional decisions about what to save from my old life. That is a huge, tortuous job.

That’s when I raised my voice to my two friends. “Clean out your junk/stuff/valuables/memorabilia/paraphernalia, pictures now!” I exhorted them not to hold onto that stuff for one minute more unless it truly has value and precious memories are attached to it. I plaintively shouted, “Do not wait for someone to die because it gets a helluva lot tougher then.”

Once you lose a loved one, you have to make all those tough calls by yourself. Many years of emotion and experience  get impossible to sort. So many times I looked at something of little value, not in terms of whether I or my kids wanted it, but I wondered if I was betraying my late wife Jean by discarding it. I gave my all for Jean when she lived, but that sense of betrayal is a hard guilt-trip to shed.  My new wife Candace struggled with the same thing when it came time to clean out her house. Her husband David was as much a part of her moving  process as Jean was in mine.

With the wisdom earned though tough choices, I told my friends to make the tough decisions about “stuff” now and with their beloved partners at their side. I also told them to talk those choices over with their kids. It is silly to save stuff for Johnny when Johnny doesn’t care a lick about that piece of memorabilia that nobody remembers anymore.

There are lots of practical reasons to clean out your junk now including being sure nothing of legitimate monetary or emotional value gets thrown out later. But the biggest reason to do your cleaning now is to avoid the inevitable second-guessing that will plague you when you are forced to do it alone.

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

Serious family illness can teach valuable lessons

I went out on a date with my new wife, Candace, last week. A date may strike you as small beans, but for us, it was a very big deal because since October 2 she has been recovering from difficult brain surgery to clamp off an aneurysm. The surgery was three weeks after our delightful wedding. Recovery has been difficult and painful, complete with double vision.

Everywhere I look these days I seem to find medical crises that create incredible tension and challenge for my friends and their families. Few of us get a pass on major medical issues and my experience with Candace crystallized some important truths that may be helpful for others.

One of the most important ones is that friends standing with you is invigorating and comforting beyond understanding. Four dear friends sat with me during the surgery and one, Gregory,  surprised me by flying to Phoenix from Sacramento just to sit with me. Candace was exuberant to know I had that kind of backing but her friends have flocked to her side too. Flowers and cards have bolstered her day after day. One of her closest friends, Cathy, sent almost daily cards, and some days two cards. We’ve gently joked about her apparent obsession, but at the worst moments of healing, the love vibes behind Cathy’s cards are palpable and sustaining. That kind of support prevents you from crawling into yourself and from dwelling in self-pity.

A second lesson is that it is important to live in the present and not in the past. I was sorely tempted to conflate Candace’s health crises with the fatal health journey of my late wife Jean. I tried to fight against the temptation to relive that experience as I worried about, prayed for and cheered for my dear Candace. It was probably natural to compare and contrast the two experiences but it’s a fool’s game. You cannot possibly equate two different health cases and it only leads to futile worry and stress. Deal with what you have in hand and don’t make it worse.

Another important lesson learned is patience. As far as medicine has come, recovery from serious surgery is just damned hard. Between overcoming the effects of surgery, recovering energy, dealing with serious pain and anxiety over being “normal” again, the convalescence takes a great toll on the patient and yes, the caregiver too. It is easy to say “relax and be patient,” it is much harder to do so. Celebrate small forward steps and keep the big picture of healing in mind.

Perhaps the key lesson during recovery is gratitude. In our case, a doctor discovered the aneurysm when he was looking for the cause of an ear problem. It was fortuitous beyond belief. Then we found out that the aneurysm was very close to bursting when it was clamped. Call it blind luck if you wish, but Candace and I believe there was a Divine hand looking out for her, and for me. Whenever Candace struggles, and my heart bleeds for her, we grab each others hand and remind each other how lucky and blessed we are.

We know Candace and our marriage has caught a big break and we’re thrilled about it. The final lesson to learn is how we can take advantage of our fresh new opportunities by  converting our gratitude into action.

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

Somebody down the street always has it worse

One morning last week I had terrible trouble buttoning the top button on my dress shirt. My right arm and hand are largely decorative, as opposed to functional, so such simple tasks can be difficult. It may strike you as a silly frustration but for the briefest moment I felt just a little sorry for myself.

As suddenly as that emotion hit me it was replaced by the thought of my friend Jennifer Longdon who struggles with the very genuine difficulties of navigating a wheelchair and the debilitating troubles brought on by a random highway shooter several years ago. Jennifer recounts her challenges often on Facebook and any friend of hers quickly comes to realize the real pain of disability.

I felt foolish for lamenting my trivial challenge when many people like Jennifer know genuine pain and obstacles from hell.

Actually I learned that lesson very early in my life and I tell the story in my book, “Some People Even Take Them Home.”

When I was 11 or so and still in a pediatric ward I contracted an infection and was placed in protective isolation to protect against the dangerous spread of mysterious bacteria to other patients and staff. Everybody who came into my room, from nurses to doctors to Mom, donned surgical robes and masks.

As I wrote in the book: “The desolation and loneliness of that imprisonment were suffocating until two surprising teachers arrived to show me how fortunate I was.

In the room next to me were two young people I never met. They had as profound an effect on me as anyone else in my 64 years. They were two-year-old twin boys and they had been severely burned in a Saginaw, MI house fire. I knew the boys only by their constant and hideous screams. They were critically injured and their skin was obviously gravely tender. I listened to them yell in agony for hours on end. Horrible, piercing cries communicated unbearable torment.”

Even at my tender age I was sharp enough to realize that my own infection was small potatoes. Those boys taught me the true meaning of suffering but I vividly remember the slow dawning of a vital truth.

I have no idea if those little boys survived. I pray they did. What did survive was the belief burned into me that somebody down the street, or around the corner, or in the next hospital room always, always, has it worse than I do. That’s why I try so hard to smile through tough times. I hope those screaming, crying boys have made me more caring and more generous.

A little thing like that damned shirt button serves to remind me how grateful I need to be.

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