Special Needs Mom

Finding My Father...

How a daughter given up at birth learned her father was Joe Eszterhas

Sunday, August 03, 2008 , James Ewinger

Cleveland Plain Dealer Reporter

 

Joe Eszterhas sits on a big leather couch next to his grown daughter.

It is a quiet moment at the Geauga County home of a writer renowned and reviled for "Basic Instinct" and his other violent, sexually charged movies.

But for him and for her -- father and daughter -- this gentle suburban idyll is far more dramatic than anything he's written. This is the first time either has spoken publicly about their relationship.

Until 1996, these two were unknown to each other. Suzanne Perryman, as she is known today, was adopted at birth by others 40 years ago. She moved to Arizona , where she still lives.

After the death of her adopted father in 1986 and the collapse of her first marriage, Perryman was ready to look into the eyes of a blood relative.

She did not know that she was looking for the man viewed as Attila the Screenwriter.

She did not know her biological parents, did not know their names, where they were, what they did or whether they even wanted to see her.

"I grew up very comfortable with the idea that I was adopted," Perryman said. But she wanted to know her own story.

 To read the complete article, please click here..

http://www.cleveland.com/entertainment/plaindealer/index.ssf?/base/other/1217752259317541.xml&coll=2

The Trip

 Soon we will leave for Cleveland. Seven days scheduled away, for the girls and I . We enjoy the comforts of home and I will miss the peaceful chaos of our being together. My husband can’t go with us this time, and that’s okay. We will miss him , and Max ( more pics to come) , but we are looking forward to staying at my father’s house. He has four boys- the girls love being silly with them, and generally just hanging out, playing barefoot in the grass . Rare time spent together to be savored.

There will be high points of the trip- no doubt. Quiet moments with my father, still a new friend in my life, a lunch with an old contact who helped me search for him long ago…( more on this later..).Great conversations with his wife, whom I admire and am happy to call my friend.  There may be challenges too… two EKG’s, two metabolic work ups, one EEG, two kidney doctor checkups complete with finger pricks, two brain MRI”s with MRS, complete with anesthesia , lots of labs– and the question and answers with our expert doc. Three days of driving into the clinic ,and always unexpected developments . Yet still, we are blessed to have this place to go, to have the support, the knowledge and expertise, even if it’s a plane ride away.

Getting Ready

  

This is what I know- living with, and parenting a child with a medical condition isn’t easy. But it’s not that different from parenting typical kids either. You stay positive, and patient. You encourage, offer hope, show them how to make friends, share excitement, dry tears, color with your kids, soothe their fears away and at the end of the day you make sure they know they are loved, cherished and protected. You live your life with the right priorities, so that you have no regrets. You do lots of laundry, kiss boo-boo’s and you try not to think about the future in detail.

 

 Both of my girls have a metabolic disease that is defined as “ progressive”, yet that word goes against everything I believe. You can’t teach others to be positive, to dwell on accomplishments, to have fun, to live on the lighter side, to let my daughters just be kids- with that word hanging over you. It’s an acknowledgement that things will get worse. Using that word is an admission of fear.

 

Because there is no treatment, the key to managing their health is to prevent the progression of the disease, keeping them as healthy as possible. By preventing fatigue, by keeping them out of extreme temperatures, by reducing their exposure to virus and infections, … By managing their individual symptoms like epilepsy , and kidney disease. Most of the year I am in management mode, safeguarding, nurturing and not focusing on future prognosis.

 

We travel to the Cleveland Clinic, once or twice a year. There we see one of the few specialists for mitochondrial disease. A neurologist who has seen so many patients over the years- that he has developed the unique ability to offer insight to the future.

 

In previous years, on previous trips I would ask “ Will Zoe ever walk, will she ever talk?” He gently encouraged me to hope, to try but most of all to be patient. The course of this disease is different with every patient. When we have health issues, he often knows what comes next. Yet still, there is no standard, no road map. We have accepted this. So instead we just steer around the biggest obstacles, accepting the fact that sometimes you just drive, even when you don’t  know where you are going.