Getting Personal: Stories of Life with Tourette Syndrome

Edited by Michael G. DeFilippo

You’ve probably heard of Tourette syndrome, and if you’re like me, you think you have a reasonable understanding of this condition.  Trust me.  You don’t.

Michael DeFilippo’s book,  Getting Personal:  Stories of Life with Tourette Syndrome, is a collection of 22 from-the-heart stories designed to dispel myths and enlighten us all.  If you think uncontrollable twitching and cursing explains Tourette’s in a nutshell, then you are mistaken.

A small percentage of the TS population have coprolalia, the involuntary utterance of obscene or socially inappropriate outbursts which have given the syndrome a degree of notoriety.  More commonly, TS manifests itself  in an assortment of involuntary vocalizations and physical movements.  These “tics” can be throat clearing, grunting, sniffing, snorting, and other sounds.  Motor “tics” may involve blinking, grimacing, jumping, jerking, or other movements or urges.

If you were fortunate to see Hallmark’s presentation, “Front of the Class,” you will recognize one of the contributors, Brad Cohen.  His courageous effort to prove that he could become not only a teacher but an excellent teacher, was both inspiring and instructive.  In Getting Personal, Cohen discusses some of the challenges he overcame and offers words of wisdom encouraging everyone to live a special life that embraces our best possibilities.

There are tender moments in Getting Personal, like the time DeFilippo observed his three-year-old son playfully mimicking one of his father’s tics.  There are also heart-breaking tales of relatives who are critical and unsympathetic.  And there are moments when you want to cheer, like when a substitute teacher ignored sixth grader Kevin Bernhardt’s explanation that he could not control his TS tics.  When she continued to demand that he stop, his whole class stood up for him, and a dozen marched straight to the guidance counselor’s office to defend their friend!

These stories stand as lessons to us all that compassion and acceptance go a long way in building the bonds that make for a strong and successful society.

Tags: Brad Cohen, Getting Personal, Michael DeFilippo, Tourette's syndrome

Sweet Sydney (photo courtesy of Now I Lay Me Down to Sleep)

The anniversary of the best day of my life is approaching. Sydney’s birthday. Next Sunday, March 14 at 5:45 PM will mark the day that beautiful baby came into my life.

In my mind, I imagine what she would have been like as a healthy baby if she were alive right now. She’d be walking. I would protest that she was still a baby and not a toddler. She would run to me smiling. And I would pick her up, kiss and hold her close. I would whisper secrets in her little ear.

I would make up stories, just for her. She would gaze at me with wonder in her eyes. In her own way, she would tell me things and show me things. I would dance for her and with her, I would make up songs. She would run after Anakin, and he would let her gently tug on his tail. I would then say, “love the animals, baby,” and she would pet him gently, and look up at me for an approving smile. We would go to Trader Joe’s to shop together. I would say, “Look baby Peanut, pink tulips!” And I would talk to her all the time.

She would sleep, and I would check in on her. I would watch her sweet slumber; closed lids with long eyelashes.  Her hair would be growing in soft, blonde tendrils. And my favorite moment of each day would be when she opened up her blue eyes in the morning, and reach for me to get her.

The snow is starting to melt. At night, the melted snow re-freezes to ice, almost like the Frozen Tundra that is Minnesota can’t let go of the winter. Grief is like that. It starts to transform, then goes back to its original form. But then eventually, flowers bloom. Spring will come.

I don’t want to be sad on her birthday. I want to celebrate her life, however short. I want to celebrate that I was with her for each one of her 186 days, and that she and I were together, just us, from June 2008 when she was conceived to the day she was born. I would talk to her all the time then, she was with me then, but I couldn’t hold her or kiss her. I carry her with me much in the same way now. She is always with me.

But no, it’s not enough. It will never be enough. My heart aches for my daughter. I miss her so much.

Today I bought pink tulips- I have them in bud vases all around my apartment. A sweet reminder of my Sydney, my life in “Holland,” and how she changed me, changed my heart forever.

Love,
Sylvie

Tags: Sylvie Stephens

by Kathryn Stockett

“Mae Mobley was born on a early Sunday morning in August, 1960.  A church baby we like to call it.  Taking care a white babies, that’s what I do, along with all the cooking and the cleaning.  I done raised seventeen kids in my lifetime.  I know how to get them babies to sleep, stop crying, and go in the toilet bowl before they mamas even get out a bed in the morning.”

This story captured my heart from the very first paragraph. Set in Jackson, Mississippi, 1962, The Help gives insight into the world of black maids and their white employers during the turbulent civil rights era.  The book is told from three different points of view, maids Aibileen and Minnie, and a white journalism graduate from Ole Miss, Skeeter. Delving into the complex relationships between races, Stockett’s fictional account reveals the full range of emotions–pain, affection, fear, ignorance, love, humiliation–that underpinned Southern society in the sixties.

Someone, please make a movie out of this one. My dream team for The Help:  The daring and statuesque Aibeleen would be played by Queen Latifah.  The character of Minnie requires a feisty dynamo with a comic edge–Raven-Symone.   Gwyneth Paltrow would make a great Skeeter (hair would have to be frizzed).  Elizabeth Leefolt?  Reese Witherspoon.  I can see Becki Newton of Ugly Betty fame playing the wicked Junior League president, Hilly, but she would need to eat a few slices of caramel cake every day for several months to fill the role properly.  One of my favorite characters was Celia Foote, the blonde bombshell from Sugar Ditch; Scarlett Johansson could pull her off.

Strong feelings abound for this book. Some folks love it; some folks hate it.  The portrayal of dialect is offensive to some and the portrayal of Southern whites is offensive to others.  Certainly, these few characters do not represent the totality of Mississippi attitudes and personalities in the 60’s, but when I read some of the emotionally-charged negative comments, I’m reminded of Rodney Dangerfield’s famous line:  “I resemble that remark!”

So relax. It’s just a novel.  Curl up with this one and recognize the miles we’ve traveled to become a better state and better people.

Tags: Kathryn Stockett, Mississippi, The Help

Sylvie Stephens spends precious time with her daughter, Sydney.

Sylvie Stephens’ journey with her daughter, Sydney, has been such an inspiration to me. When it became clear that Sydney was heaven bound, God’s grace took over and gave Sylvie the strength to fill her sweet girl’s days with love and happiness.

Sylvie is not the first nor will she be the last parent whose time on earth with a beloved child is brief. It occurred to me that God has blessed Sylvie with a generous spirit and a willingness to help others who are going through a frightening health trial with a child.  She has agreed to write an occasional article and answer questions for Nathan’s Prayer.  I had an opportunity to ask her a few questions.

Karen:  Sylvie, so many people have read about your journey with Sydney, your beautiful baby girl who lost her battle with a congenital heart defect last September.  Tell me a little background information about yourself.

Sylvie:  I spent six months with my daughter at Children’s Hospital in Minneapolis, constantly surrounded by medical professionals and God’s presence.  I witnessed her care and procedures, read her charts, familiarized myself with vital signs, metrics and medical terminology.  I work as an engineer.  What medical knowledge I picked up during those six months was absorbed through the experience (never through my own research).  I grasped what I could in the medical sense, and prayed for understanding of the rest.  Faith filled in the gap.

Karen:  For many people going through a health trial with a child, their faith is focused only on God allowing their child to live, not giving them courage to deal with death if that’s God’s will.  How did your faith and your walk with God evolve as you realized your time with Sydney was limited?

Sylvie: I remember always praying for God to hold her in His arms when I could not before falling asleep.  I began my prayers like this when I was in the NICU parent sleep room when she was very little, just days old.  What I meant by my prayer was that I wanted her to feel wrapped in love when I, the person that loves her most, could not physically be with her.  At first, there was a fear in my heart as I would say this prayer.  I would cry in agony and would want to take the prayer back when I realized my prayer may be answered- she would be in God’s arms, but not in mine ever again.  But, with the grace of God, I realized a mother’s resolve:  what was best for my Sydney, not best for me.  The ultimate sacrifice.  I grew to accept that the best life for Sydney could not be materialized in this world.  Coming to terms with that was the first step, letting her go was another, and was much more difficult.

Karen:  Thanks, Sylvie, for sharing your journey.

If you haven’t read previous posts about Sylvie and Sydney, here are a few:  Pray for Sydney, August Update, Strength, Nurse Angels, Kisses, Letting Go, Birthday, and A Better Place.

Sylvie welcomes your questions about parenting and loving a child with a congenital heart defect.  Send your questions either by commenting to this post or by email (see “contact” at the top of this page).

Tags: Congenital Heart Defects, Nathan's Prayer, Sylvie Stephens

My son, Nathan, is a scimitar syndrome survivor.  Little Aubrey Rose also had scimitar syndrome, but did not survive.  Her family created a charitable foundation in her name.  I received this newsletter from the Aubrey Rose Foundation:

Our Mission is to help families caring for children with life-threatening illnesses with our focus being on the family unity.
We Strive to lift families from life’s complexities during this difficult time by providing emotional and financial support.

Hello Everyone,

It’s our Anniversary – We are in our 10th Year!!! We started the Aubrey Rose Foundation on February 10, 2001, which was three months to the date of Aubrey’s death. Starting this Foundation gave us a focus to get up everyday and to live. We know that Aubrey would want us to live and to thrive and that’s exactly what we’re doing with the Foundation. Can you believe that this is the10th anniversary of the Aubrey Rose Foundation? It’s hard to believe and somewhat bittersweet.

This has been a labor of love for us and so very healing to be able to help so many children and their families. At the same time, it’s also a reminder everyday that our full-faced, always smiling, beautiful little girl, Aubrey, is no longer here with us. We also know that even though she is no longer with us, she is still touching people even in her death! We had a doctor tell us that Aubrey’s story is a story from the Bible and it needs to be told and so Jerry and I have our work cut out for us in spreading her word and we’ll be doing this forever – with a smile on our faces!!!

We thought we would share with you a little blurb that a father of one of our scholarship recipients wrote to us after hearing us speak. The writing from his heart touched us very deeply.

“I was moved by the work you do and especially by it’s inspiration. This is a tremendous example of how blessings can come from a great loss… Through this scholarship program, you are creating a stimulus for teenagers to think beyond themselves and to consider God’s purpose for their lives….While this scholarship itself is generous, more important is the opportunity to reinforce the value of life and to examine how they can and should impact the lives of others.”

We truly felt that God gave us Aubrey for a reason and her job was to make people aware of their blessings in life and to reach out and pray more and when God called Aubrey home, that’s when our job began! We have been charged with a huge mission and we welcome this gladly but we also know that we have to work hard and work smart to carry out this mission of helping millions of children and their families. 10 years is just the beginning… wait until you see what we have instore for the future!

Thank you to all of you for your love, your faith and your continuing support of the Aubrey Rose Foundation.

Love to you and your family!

Jerry, Nancy, Carly, Spencer and Saint Aubrey Hollenkamp
George and Nancy Frondorf, (Aubrey’s Grandparents)

• Increase awareness and understanding of the Aubrey Rose Foundation and all it has to offer/provide
• Inspire the communities to embrace our mission – helping children with life threatening illnesses
• Enhance relationships within the communities and with current key organizations/groups
• Expand relationships in other communities and around the world
• Celebrate a decade of achievements
• Set goals to achieve even more in the next ten years.

We welcome you to join us at our different programs that we have and we would love for you to attend our fundraisers as well but more importantly, we want you to share with those around you what the Aubrey Rose Foundation is all about.

If you hear of a child with a life-threatening illness, please share with the parents that we can help them; if you have an 8th grader going on to Catholic education, let them know that they can apply for a scholarship, and if you want to volunteer as a family somewhere, come and join us at one of our Ronald McDonald House themed dinner parties – you are welcome anytime! The Aubrey Rose Foundation has many different facets but the bottom line is to help put smiles on the faces of many children and their families through financial, emotional and spiritual support! We welcome you all to join us in our mission!

www.aubreyrose.org

The Aubrey Rose Foundation is headquartered out of Cinncinati, Ohio, but their charitable deeds are far-reaching.  They assist families from many parts of the country, AND they have provided life-saving surgeries to two children, Elena from Russia and Hannah from the Philippines, through their “Healing the World’s Hearts Program.”

To learn more, visit their website at www.aubreyrose.org.

Tags: Aubrey Rose Foundation, Scimitar Syndrome