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.”

 

I think I figured out a new definition of love

I was driving down the highway when I think I realized my own personal definition of love. I will be 67 years old in a week or so, but I don’t think my discovery has come too late.

As I drove, I thought of my bride of six months, Candace. And, I smiled. It was the kind of smile that started at my mouth, occupied my entire mind and then made my insides all gooey. It was a smile of gratitude, a smile of comfort. I was consumed by that smile of love. I suddenly wanted to write a love letter to her. I guess this is it.

Passion is great, affection with a great big hug rewards the heart, and concern and care are certainly essential elements of love. But in that flash, I realized that real love brings with it that satisfied, contented and all-absorbing smile. And, I happily realized that smile of love has been a constant in my life.

As I reflected, I realized that smile was always the greatest sign that my late wife Jean and I had something special too. I was able to recall great feelings of satisfaction that were always marked by that smile that grabbed my soul. Even when she is gone I get consumed by that great big smile of love. It happened last weekend when I saw something in our old neighborhood that would have amazed and tickled her. That great big smile of love captivated me.

My kids induce that big, all-encompassing smile. Incredible emotional connections with my daughter, Tracy, warm me with that sort of smile and so do the incredible bouts of repartee I have with my son, Jeff. And the simple thought of my son Jason, who has Down syndrome, grips me with a smile that envelops my entire being. Then there are my two delightful grandchildren, Collin and Kayley. I smile so much when I think of them that I fairly burst. That’s the gooey kind of love.

I sometimes think people look in all the wrong places and for all the wrong emotions for love. I always feel sorry for the young couples who seem to think they are going to hear bells or giant gongs when they fall in love. There are no bells.

Happiness comes when we bask in the comfort, content and satisfaction of loving and being loved. When we find that sweet spot, a great big smile seizes our soul and carries us off to a special place worth celebrating.

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

 

Suddenly my son’s health seems like a big deal

There is a short passage in “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance about the day after my son, Jason, was born with Down syndrome. The staff pediatrician at the hospital was discussing the diagnosis with us. I wrote this:

He (the doctor) actually began the conversation with good news, but his delivery rankled more than it comforted. He had ordered an x-ray which revealed Jason’s esophagus was connected to his stomach. That’s not always the case with Down syndrome children. And, as far as the pediatrician could tell there were no heart problems, which is the other huge risk factor for Down’s babies. Jason was perfectly healthy except for that pesky mental retardation,(1979 term.) That blessing of good health didn’t impress us much that morning, but we have thanked God for Jason’s exceptionally good health practically every day since.

Jason has been incredibly healthy as a child and now as  an adult. He has been so healthy I am afraid I took that good health for granted.

Jason fell on the Minnesota ice and snow a few weeks before Christmas. When we visited during the holiday he complained that his back was hurting. So last week he visited his doctor.

His house manager wrote me after the appointment and said, “Jason was seen last night by his primary physician for his lower and mid back pain. He had three x-rays taken. The doctor stated that his bones were close together, but nothing that would require surgery. He suggested using ice as needed for pain and rest.”

On the face of that note Jason is fine. There is nothing to worry about. But I did and I do.

The words that leaped off the page for me were, “but nothing that would require surgery.” I had never come close to imagining Jason undergoing back surgery. In truth, I have more or less lost sight of the fact that Jason is aging and that he is going to have to deal with all of the things associated with that process.

Selfishly I think about how disruptive a major Jason illness or surgery would be for my family, but once I get past that I am frightened to death about how Jason would deal with a debilitating illness.

I am afraid that sort of experience would be overwhelming for him and that makes my stomach churn.

I can’t protect Jason from bad health any more than I can protect my other children, but in my mind they are adults and Jason is an innocent boy who needs my care and attention.

I am convinced Jason’s back will be fine, but this little scare has been valuable. It’s focused me on Jason’s vulnerability and caused me to think about some important contingencies around his future care.

And, I won’t take his good health for granted ever again.

Jason, the remarkable gift that keeps on giving

A million thoughts flooded my brain Saturday as I married the lovely and charming Candace Medd Hadley. I will probably discuss many of them in future posts, but my son with Down syndrome, Jason McGuire, took a big share of those thoughts.

Jason was his ebullient self throughout the day, though he was particularly worried about the one task I assigned him. Jason was in charge of handing the wedding rings to the priest. His incredibly loving siblings, Tracy and Jeff, were as concerned as Jason was about his job so they took him to the church basement and practiced. Jason executed the exchange several times to his brother and sister so he was ready when the time came.

Here are the words of his job coach at his workplace: “Jason  was very chatty about it all and said his favorite part was holding the rings! He showed me step by step what his job was and said he didn’t drop the rings or get them stuck on his finger. He said it was good they didn’t get stuck otherwise he would have had to marry his step mom! He had such a great time and he is so happy.”

Oh, what a mess that would have been if he would have had to marry his step-mom. There is a country song in that to be sure. That logic is typical of Jason. He believes that you wear seat belts to prevent an accident. I remember his mom, my late wife Jean and I were once walking through the underground metro in Paris. We were very confused because we only understood a very little bit of French. In our befuddlement, Jean observed, “this is how Jason goes through life, with a little bit of a clue, but never completely understanding.”

That phenomenon was in full effect at the wedding reception Saturday. As a close friend of mine put it, “he held court like no other.”  Yet, when his brother wanted Jason to join him for a toast he hated to be pulled away from his wedding cake. There must be priorities and a toast versus more cake didn’t seem close to Jason.

As I watched, and now reflect on Jason’s delightful antics and the way he endears himself to everyone he meets, I also reflect on a piece of state legislation in Ohio. Abortion opponents are pushing Ohio to make it illegal for a doctor to perform an abortion if a woman is terminating her pregnancy to avoid having a baby with Down syndrome. I find the proposed legislation an incredible invasion of privacy and an infringement of civil liberties and generally repugnant. Yet, as I write in my book “Some People Even Take Them Home,” “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. I hope the optimism that is inherent in this book may provide intellectual and emotional fuel for making those life-changing decisions.”

I don’t wish Down syndrome on a child or parent but last Saturday my overpowering thought was how awful it would be if there wasn’t a Jason at that wedding to touch people’s hearts. His sweet cluelessness and deep kindness makes us all special people.

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

Tending “two gardens” has reinvigorated and sustained my life

The grief to new love trilogy-Part I.

Readers of this blog followed my grief journey from last September to May of this year when I took a summer break. One of the first and most significant posts was the entry which argued my good friend Ian Punnett’s perspective that “you cannot do grief wrong.” That advice, delivered the night of the wake for my dear wife Jean Fannin McGuire, guided my emotional journey and my writing about grief.

And the journey indeed felt special to my circumstances. For the first six or seven weeks I could not have told you what my emotions were. I have used the word kaleidoscopic to describe them. I rewrote the last chapter of  Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance during that time. As I look back at those words it is obvious I wrote them in a frenzied fog. Most of the sentiments were right on, but I lacked serious perspective. Seven weeks after Jean’s death a family wedding sent me into a profound downward spiral of grief which lasted for a couple of months. It was horrible.

I have written before that I found grief exhausting. It was also incredibly lonely. Four things began my  recovery from what felt like the depths of grief.

The first may strike you as weird, but I had a conversation with Jean as I drove to work. I told her I was going to do two big things I feared she wouldn’t approve. I offered her a deal that if she came back I wouldn’t do those things. She didn’t return. That may sound like a silly exercise, but it was incredibly important in my grief process. It helped me realize that no matter how much I cried, Jean was gone from my life and I was on my own. That forced me to move ahead.

The second thing that pushed my grief to a new stage was my realization that I had not been very nice to people while I was grieving. I was just angry at everybody. When I found myself grunting at students I knew I had to stop feeling sorry for myself.

The third key force in working through the depths of grief was my grief counselor, Jenny Diaz. As I wrote in this blog, she strongly urged me to repeatedly watch a video of Jean’s life that reduced me to sobs. She advised me to watch it until I could celebrate it rather than sob. To this moment, I remember vividly the first time I felt incredible joy just marveling at Jean’s smile. I have tried to celebrate Jean ever since.

There was a fourth factor in moving past grief but I never wrote about it. I have felt free to talk about my own journey but I have been reluctant to talk about the journeys of those close to me. About three months after Jean’s a death, a friend from the Star Tribune in the mid-80s, Candace Hadley, contacted me and offered grief help. Her husband died two-and-a-half years before Jean did. I had worked with Candace and we were good friends. Candace and I had been out of touch for the best part of 25 years when we first talked about grief on a Monday night in late September. The conversation lasted 55 minutes. I know, I checked my phone. It was more than obvious that our friendship had survived the years.

As weeks passed and we talked for long periods on the phone, the bond grew stronger but I was still grieving. I thought about Jean’s death constantly and yet I could clearly see a new relationship was beginning. The tension between two powerful new forces in my life–grief and new affections– left me confused and anxious. I made the decision that even though a wonderful relationship was developing with Candace I could not proceed while I was still in the throes of grief.

Fortunately, I discussed it with my grief counselor Jenny before I ended it. I worried whether I could grieve Jean and love Candace at the same time. Jenny was convinced Candace and I had something important. Jenny shared with me the metaphor that has sustained me for many months and will forever sustain me. She said, “You need to tend two gardens, the garden of grief over Jean’s death and the garden of your new life with Candace.”

That precious metaphor released me to grieve Jean at the same time I was falling in love with Candace. With Candace’s understanding and patience I was able to process my grief and build a new life and a new love at the same time.

My two gardens are incredibly important to me and they’re flourishing. As my Facebook followers know, this summer my family and I had a touching, sad memorial for the first anniversary of Jean’s death. Facebook followers also know that a few weeks later I proposed to Candace and we will marry Sept. 12.

NEXT: Part II of the Grief to new love trilogy: the qualities of a late in life relationship.