The purpose behind An Uncomplicated Life

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We’ve reached the 100-review mark on Amazon. We have 90 5-star reviews, and 7 4-stars. We have 2 1-stars… one was because the reader claimed she didnt get the book she ordered, so hadnt read it yet. The other must have thought one star was good. Loved it, she said.

Thank you.

I wrote the book for 2 reasons: Because people told me I should and, later, because I wanted parents and relatives of kids with disabilities to have something positive to reference, especially right after their special-needs kids are born.

The day Jillian was born — Oct.17, 1989, the day of the San Francisco earthquake — all Kerry and I wanted was for someone to tell us everything would be OK. That this child would be a blessing of a different kind, that she would teach us more than we would teach her, that she came by naturally several keys to life that lots of us struggle to attain.

Store shelves are full of self-help books and books of inspiration whose goals are to make us happier, better-adjusted people. If only everyone seeking such enlightenment could spend some time with our special-needs kids.

We wanted someone to tell us all that, on that first day.

No one did.

We got the hefty catalog of Won’t-Do’s instead.

I’m hoping An Uncomplicated Life has helped some of you navigate the pain and disappointment, and steered you toward the joy we found, and live to this day. Unlike most books on the subject, An Uncomplicated Life doesn’t end after a year or two or three. It ends with Jillian’s wedding. It only gets better. I promise.

If you have a minute, read a few of the reviews for An Uncomplicated Life. These aren’t critiques by professionals. They’re judgments made by folks living our lives.

Thank you for reading.

Expect, don’t accept.

Paul

 

 

 

 

 

 

 

Helping doctors to break the news…gently

IMG_0976Jillian Benfield, my social media pal from AZ, recently asked me for a couple sentences to describe our experience in getting the news from doctors that Jillian had Down syndrome. I could do it one word:

Awful.

Insensitive. Careless, witless, crass.

That was 1989. From what I’ve heard from new parents in 2016, it’s not a lot better. Twenty-seven years, and it’s not a lot better?

The doctor that told my wife Kerry said it off-handedly. Apparently, he assumed someone else had told her already. I wasn’t even at the hospital; I’d gone home to fetch our 3-year-old son from a neighbor’s, giddy to introduce him to his little sister. The phone was ringing as I walked into the door of our house, to retrieve some things before returning to Kerry’s room.

“They think Jillian has Down syndrome, Paul.”

If that wasn’t bad enough, they wanted to move Kerry out of the maternity ward the same day Jillian was born. The unsubtle inference being, “This is a happy place, and you are not happy.”

As I wrote in An Uncomplicated Life, that was the last bad day. We left the hospital the next morning, to begin our life’s work, which has been more of a blessing than we could ever have imagined. But the issue with the doctors remains.

Here’s a silver lining: A few weeks ago, a neonatologist at Cincinnati Children’s Hospital reached out to me. Here’s part of what she wrote:

“As a medical person, I have found a few gaps in our practice. The medical community has decided Down syndrome is a disorder we should screen for prenatally, yet we have no guidelines for what to do with that information, once we obtain it.”

She went on to say she was developing a program “to address this problem with a comprehensive approach to care and counseling, to address the medical issues, but also the emotional ones you talk about.”

Bravo!

Doctors have the medical stuff down pat. It’s the human side of it that needs big adjustments.

“I want these expectant parents to leave their visit with us better educated. . . and also with hope and knowledge that their child is a blessing, just like any other child.”

Perfect.

Children’s Hospital now has An Uncomplicated Life on a suggested reading list for parents of special-needs newborns. Once their budget has been established, they plan to buy multiple copies.

I urge all hospitals to consider doing the same. Give parents the diagnosis. Then give them a copy of the book. Hopefully, they will learn what the rest of us know already: We don’t know know what we’d do without our special-needs kids.

By the way, Jillian Benfield is on Facebook. She welcomes your input.

Thanks for reading. See. Don’t Look.

 

 

 

 

Words of kindness from our readers

 

 

A kind word or two from reviewers on Amazon:

*

I picked this out for my wish list and received it as a Christmas gift with our daughter, Stella, set to arrive in February. This book gave me a rare look at the father’s perspective on raising a daughter with DS. I am grateful to have been able to read this as it adds to my hope and belief that life will be changed, but in many ways for the better. I especially enjoyed the concluding chapters, as I felt underlying sadness and challenges resolve into beauty and success, as Jillian and her family reached so many goals. This book is a great gift, as is Jillian.

*

One of the most sincere, moving, and upbuilding (and funny in places) books I have read in a long time. By the time I was nearing the end of it, I had begun to feel deprived simply because I have not had the privilege and joy of knowing Jillian.

*

A great read for all parents…not just those whose child has been born with a disability. Let your child define who he or she is going to be, not the so-called experts. Jillian’s story will bring tears to your eyes and then make you laugh. I enjoyed it from beginning to end.

*

A gratifying book about a very personal story. This is a beautiful and heartwarming story, but what makes it so special is how well written it is. Other reviewers have commented on the fact that the author hasn’t written it in a chronological order. But I found that made it so much more interesting. Events that occurred in the present could trigger thoughts of Jillian’s childhood and the author then filled that in. The book is very informative, but also thoroughly enjoyable.

*

Bought it for the cover and stay with it for the writing and for Jillian. Sorrow and glee both in one page. Gillian I love your life too!

*

Someone once said, “While we try to teach our children all about life, our children teach us what life is all about,” and truer words could have not been spoken about this memoir. It is an exceptionally well written book that captures the raw emotion of a father (and his entire family) raising a child with special needs. It is an insightful look into their challenges and triumphs, and was thought-provoking, heartwarming and inspirational. Thank you, Paul, for sharing with the world how exceptional an uncomplicated life can be.

Worry and joy: A young mom’s story

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(Jillian as an infant. Photo: Mom)

One of the best things about writing An Uncomplicated Life has been the people I’ve met and will continue to meet, if only virtually.  The speaking and signing appearances nationally and locally have been great chances to offer hope to new parents. A reason I wrote the book was I remember vividly that when Jillian was born, all Kerry and I wanted was for someone to tell us everything would be OK. No one did. An Uncomplicated Life, I hope, is one big, 350-page message to you: Everything will be OK.

In keeping with that theme, here’s a blog post I received from a young mom in Minnesota. Her son is Bryce. Her  blog is Life According to Julie. I urge you to check it out. Here’s her latest entry.

Meantime: Expect. Don’t Accept. 

Today, I took a sick day to stay home with Bryce, who is recovering from a stomach bug. It gave me the opportunity to finish the book I was reading. It is called An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter. It was written by Paul Daugherty, a sports writer, about life with his daughter Jillian. Jillian is a funny, charismatic, thoughtful, determined young woman who happens to have Down syndrome. My husband bought it before a recent trip, and of course I hijacked it as soon as he got home. Reading is my crack.

    Reading books about people with Down syndrome is always an emotional roller coaster for me. I laugh, I remember, I cry, I worry, I relate. I feel guilt for not doing enough. I question myself. I have been realizing more and more lately that we need to start doing something about Bryce’s future. Our first year with Bryce was adjusting to the idea, falling in love with him, and shock. The last two years have been a lot of worrying, knowing that we should be doing something, and wondering what that something is–and where the money to do it will come from. So far, it’s been about enjoying his smile and hugs….cheering him on, watching his love affair with his big brother. But he’s not going to be a cute little boy forever. The hard stuff is coming. And we’re not prepared.

    I’m really good at worrying. What I’m not good at is action. Those who know me well may be shocked by this, but I’m actually a very shy, self-conscious person. Making friends is really hard for me. Making phone calls requires an internal pep talk. There have been many times lately that I wish we were part of this big Down syndrome network I hear so much about. I follow Ds groups on Facebook. We’ve been to Gigi’s Playhouse a few times. I’ve looked up our local group’s meeting schedule several times. I know the network is out there….but I’ve been hesitant to jump in. Part of it is denial (still), part of it is avoidance, but the biggest part is that self-conscious, shy, introverted girl I have inside. Joining is just plain hard for me.

   That is why I’m thankful people like Paul Daugherty are willing to share their story. I can learn from him, because he’s been through it. His formerly adorable little 3 year old is now a grown, married woman  who graduated high school and experienced college. He and his wife have been in our shoes and I can learn from them. I envy their attitude and their work ethic. From the moment their daughter was born, their motto for her was “Expect, Don’t Accept”. I do expect great things for Bryce. I expect him to live on his own one day. I expect him to make friendships, find hobbies he loves, and fall in love. Paul Daugherty and his wife have shown me what it takes to make sure that happens. Expect, don’t accept.

    The thing I loved most about this book, though, was the author’s ability to put into words what I have always tried to express. I post videos, pictures, and anecdotes of Bryce online, DESPERATE for people to see his joy, his “magic”. Everyone thinks he’s adorable, but DO YOU GET IT??? You can’t possibly get it unless you know him like we do. But I’m desperate for you to understand. He isn’t a typical boy. He’s pure, unadulterated joy. It’s nearly impossible to have a bad day when Bryce is part of it. And 90% of people who find out they are expecting a baby with Ds abort. I just don’t get it. They don’t get it. Most of the doctors don’t get it.

In An Uncomplicated Life, one of the last chapters is titled “Number 47”. In that chapter, Mr. Daugherty talks about that 47th chromosome that makes our kids so unique. For some reason, our Bryce was given 47 chromosomes instead of the usual 46. What exactly does the 21st chromosome do, and why does having an extra one lead to the shared characteristics of people with Down syndrome? I don’t know. But I completely agree with Paul Daugherty when he calls that 47th chromosome “a storage tank for all her good stuff”. He says, “Number 47 contains a lot of what makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness–a plan for how to be better.”

One of our nurses in the Level II nursery wasn’t sure that people with Ds aren’t just more evolved than the rest of us. She talked about how we don’t have a right to take their lives or underestimate them….maybe they are better than the rest of us. They have more genetic material than we do, after all, not less. The more I get to know Bryce, the more inclined I am to believe her. Jillian Daugherty, and Bryce, and the thousands of other people living with Ds know something we don’t. Don’t worry so much. See and assume the best in people. Love and be loved. Live for today. Do everything with joy and gusto. Life doesn’t have to be so complicated.

Scared and sad: A letter from a prospective parent

Jillian wedding 2I recently received an e-mail from a prospective parent of a child with Down syndrome. He had purchased An Uncomplicated Life, and wanted to share his feelings with me. When you read Mike’s letter, you might feel as if you’re reading your own autobiography.

Kerry and I didn’t get an early diagnosis; the amniocentesis couldn’t be performed. Back in 1989, amnio was the only way to predict a disability. Our shock/anger/sadness came the day Jillian was born. I spent a chapter writing about it.

Mike is scared and sad and a little disappointed. Incredibly, he has received some of the same “wisdom” we received 27 years ago from health care professionals. Words such as “challenge”, “risk”, “burden” and “termination” have been part of the conversation.

That is what’s sad and scary.

I’ve e-mailed with Mike since. I asked him for permission to use his letter here, which he graciously gave. I’ve also recently asked him if he were OK with me publishing his e-mail address. If I get that OK, I’ll post it here as well.

Below is his first e-mail to me. My responses are in bold.

Expect. Don’t accept.

 

 

Paul –

My name is Mike (XXX), and I live in Boston with my wife Cristina, 3 year old daughter Maia, and her soon to be younger sister Mae as of this upcoming July.

I purchased your book “An Uncomplicated Life” about a week ago, when we received some initial markers and positive blood results that our daughter could have Down. I wasn’t going to start reading the book. It was a “just in case” purchase… I couldn’t torment myself anymore… but I started reading it, and couldn’t put it down despite all the fear it made me confront, and how I kept finding myself gasping for air or crying on the pages.

A few days after I started reading it, we saw more markers on an ultrasound and are awaiting an amnio, but the head of maternal medicine at our hospital here in Boston gave us no hope on our way out of the door. In a way, I am hanging onto your book for dear life, praying to find some strength and peace. We are not terribly religious folks, but I am a dad, and through this process all we have heard from the medical community (best in the world, right?) are words like “challenge”, “burden”, “risk”, and, sadly, “termination”.

JILLIAN WAS A DIFFERENT CHALLENGE. HER OLDER, “TYPICAL” BROTHER WAS EQUALLY CHALLENGING, IN OTHER WAYS. JILLIAN WAS DEFINITELY NEVER A BURDEN. SHE TAUGHT US THINGS WE’D NEVER HAVE LEARNED OTHERWISE. SHE WAS AND IS A BLESSING IN OUR LIVES. SORRY IF I SOUND EVANGELICAL ON THE SUBJECT.

I seem to occupy a society where there seems to be more genuine concern about whether or not Tom Brady is going to get another Super Bowl or Julian Edelman’s foot is going to be healthy for the Chiefs game than if a child with Down Syndrome is worth even bringing into the world. In a way, it seems that we are being told we are being irresponsible for even wanting to proceed with this information, that one day we will have to tell our daughter “I’m so sorry we did this to you”.

 

THAT IS NONSENSE. YOU’RE BRINGING A SPECIAL CHILD INTO A WORLD WHERE INCLUSION IS ON THE RISE. THERE HAS NEVER BEEN A BETTER TIME TO RAISE A SPECIAL NEEDS CHILD. MY MOTHER HAS SAID TO ME, ‘JILLIAN HAS COME CLOSER TO REACHING HER POTENTIAL THAN ANY OF MY (4) GRANDCHILDREN.’

 

It is heartbreaking, and seems to minimize the grief and fear my wife and I are feeling… but it is also fueling our resolve. I’m still scared. Very scared. Never been more scared. Your chapter “Sometimes” had my heart pounding, because the selfish part of me is contending with the same fears and limitations that will be placed upon my marriage, my career, my future, my time. My wife and I had also talked about, one day, moving to Italy if resources allowed. A dream. Maybe not anymore.

 

WHAT JILLIAN HAS BROUGHT TO US SURPASSES ANY REGRETS. THE EXTRA TIME SPENT RAISING HER DOESN’T COMPARE WITH THE REWARDS WE’VE EARNED. YOU CAN STILL MOVE TO ITALY, OR ANYWHERE YOU’D LIKE. WE’RE EMPTY NESTERS, AND WHEN I RETIRE, WE’RE CONSIDERING SERIOUSLY SPENDING AT LEAST 3 MONTHS A YEAR IN A WARMER CLIMATE. JILLIAN AND RYAN LIVE 10 MINUTES FROM US NOW. WE SEE THEM MAYBE ONCE A WEEK, WHEN WE BRIBE HER WITH HER FAVORITE DINNER OR JOIN HER AND RYAN FOR AN EVENING OUT. THEY ARE ENTIRELY INDEPENDENT (NO SOCIAL WORKERS VISITING, NO TYPICAL ROOMIES).

 

And I’m deeply sad, even though I hate the feeling. My first daughter was born in a room that overlooked the campus of Harvard, a place many of my friends had attended. I joked, “Look Maia, hit the books, that’s your school!” Because when your child is born, you can pretend that anything is possible. With Mae, we know already there will be limitations, and it fills us with grief, however misguided it may be.

 

I’M NOT GOING TO JUDGE YOUR BELIEFS. WE’RE ALL DIFFERENT. THEY ARE COMMON, THOUGH, AND NOT UNTRUE. BUT YOUR NEW DAUGHTER SHOULD HAVE THE RIGHT TO DEFINE HERSELF, SAME AS ANY KID. SHE WILL SURPRISE YOU. WE ALL HAVE LIMITATIONS. NONE OF THEM SHOULD BE SELF IMPOSED.

 

I think of all the families I have seen with children who may start “perfect”,

 

NO CHILD IS PERFECT. WHAT IS PERFECT?

 

but do not end up so. They get in trouble, they make life altering decisions, they cause great pain to their parents. They do not appreciate life or love. No one is guaranteed a clear path through something as complicated as life.

Two months ago, I was run over by a car while in a crosswalk. Typical day, out picking up lawn bags for yard work, grabbing a coffee. I thought I was going to die. The license plate of the car that hit me, come to find out, was one of those Catholic “Choose Life” vanity plates, with a picture of a mom holding a baby. I found it ironic that the car that could’ve ended me was “pro-life”. Now it means something entirely different. Like I said, I’ve never been terribly religious, but my ears have certainly perked up since then thinking “Okay Big Guy, I’m listening”.

 

WE AREN’T DEVOUT, EITHER. I HAVE WONDERED WHY GOD GAVE US JILLIAN, AND I‘VE HATED WHEN PEOPLE SAID, ‘GOD DOESNT GIVE YOU ANYTHING YOU CANT HANDLE.’ I TEND TO THINK GOD HAD NOTHING TO DO WITH IT.

 

I’m not sure why I’m writing. I write to try and make sense of things. For my first daughter, I kept a journal for her during the pregnancy and her first year, thinking that one day when she’s older I can give her something to remember me by, to glimpse back into the past. I have been doing the same for Mae, and a great sorrow came over me when I realized that she may not understand or be able to interpret much of what I am writing… but maybe that isn’t all that important.

 

WITH YOUR HELP, SHE WILL UNDERSTAND AND APPRECIATE YOUR EFFORT. MAYBE EVEN MORE THAN YOUR OLDER DAUGHTER, BECAUSE OF THE EXTRA EFFORT REQUIRED.

I suppose when you are scared and searching for strength, you reach out arms flailing to anything you can find, any driftwood you can latch onto in the sea. Your book is that driftwood. In that regard, i want to say thank you to your family and your daughter for sharing your story. You can add me to the list of people Jillian has inspired. People like you who tell your stories give people like myself and my wife something to grab onto when we feel like we can’t even breath, to feel that, yeah, we can do this, we can do this, it’s okay.  It will be okay.

 

THANK YOU. OUR FAMILY ISN’T SPECIAL. AND ALL PARENTS APPROACH THINGS DIFFERENTLY. I WILL TELL YOU THAT ANYONE WHO HAS TAKEN THE TIME TO ‘SEE’ JILLIAN RATHER THAN ‘LOOK’ AT HER HAS COME AWAY FOREVER CHANGED FOR THE BETTER BY THE EXPERIENCE. THAT INCLUDES ME, MY WIFE AND OUR FAMILY MEMBERS. JILLIAN IS THE BEST PERSON I KNOW.

Thank you.

Mike (XXX)

Boston, MA

 

Jillian’s full inclusion. It took a village

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A note from Jillian’s mom, truly the brains behind the operation:

Earlier this week, Paul and I were lucky to spend the morning at the All-staff Meeting for the Hamilton County (OH) Developmental Disabilities Services. The room was filled with hope and determination.  So many members came up to us and thanked us for our message and what we have done for Jillian.  But it really should have been the other way around.  Jillian would not be the person she is if she hadn’t received services since the day she was born.  Jillian started immediately in an Early Intervention program. I can’t stress enough the importance of early Intervention. It was key in helping to meet early milestones and establishing a basis for all her future development.  She followed up with years of Physical Therapy, Occupational Therapy, Speech Therapy, an Advocate and a constant stream of Educational Aides throughout her school career. Even though Jillian was fully included in every aspect of her life, the disability services she was entitled to made it all work. These people devote their lives to making other people’s lives better.  They are all to be commended for their dedication and hard work.

We were honored to be a part of their meeting.

Some programs at HCDDS are shifting from a “disability only” format to a more inclusive agenda.  I understand that this means some programs will need to be revamped while others are eliminated.  However, moving from segregation to integration does not mean an end to the services they provide. Disability Services working in conjunction with the community is needed for inclusion to work. I hope everyone can see this as a positive shift. Being a productive part of society as an adult starts with being included in society as a developing child.

We credit Jillian’s success to her fully included lifestyle.  Everyone she encountered through school, work and social life have had an effect on her ability to live an independent adult life.  And, we hope, her fully included lifestyle has had an effect on them as well.

Thank you to all who devote your lives to building a better future for people with disabilities.

Expect. Don’t accept.

An Uncomplicated Life: Be Inspired!

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It was Jillian and Ryan’s day, yes. It was a day for anyone who ever happened into Jillian’s life, and took the time to see my daughter, not simply look at her. / The Enquirer/Paul Daugherty

This is a story that appeared last March in the Cincinnati Enquirer. Please take the time to watch the accompanying video as well. It’s a nice companion for the A&E reality show, Born This Way.

http://www.cincinnati.com/story/news/2015/03/15/docs-daughter-raising-child-syndrome/70231160/