Book-ending

Through out the writing process of this book I always felt that "somebody up there " was watching out for me. That "little voice inside" encouraged me during the days when I felt a little down and through the nights I was in pain, to keep on going. Someone was there to guide me when I had difficulty finding the right words or phrase, or when my memory faltered. I really believe that I was meant to write my story for a reason. But why?

I wanted to highlight certain people in my life who were special to me. My parents are the real heroes of this book. Their love continues to shine. My siblings and other family , my friends and so many others who were and still are important in my story- they deserve to be mentioned. And, of course, Holly herself, who continues to be my angel.

I'm far from the best writer in the world. A professional writer may have told my story much better. But I knew, deep down inside, I could be the only one to write it. Was it important enough to put down on paper? Was I up to the long hours in front of the PC, writing and rewriting, editing and not writing at all, staring at the keyboard for inspiration ? Would anyone even care to read it, or was I merely writing for myself,  to ease my soul ?

I wrote with urgency as I know I have more than doubled my life expectancy. Not that I plan on checking out anytime soon but I am getting older, my health concerns are mounting, and how much longer can I beat the odds of survival?

I wished  to leave something for my family down the road to remember me by. Perhaps a future relative will pick up the book and find out they had a great uncle or distant cousin  named Greg who had this rare condition, kept fighting to the very end, and who wasn't such a bad guy. They need to know that OI is genetic and extremely rare, but can only be passed on if I fathered children. Even then, there would be a 50% chance of  my kids having the defective gene.

No need to worry. I don't have children, and don't plan to have any, as much as I love kids.

Hopefully someone will find a cure for OI in the not-too-distant future. I wouldn't want anyone to endure what I have, especially as a child.

I did want to leave a first-person account of what it is like to have OI. There are  mountains of  educational research out there, especially  since the Internet was born in the 1990s. Terrific websites, devoted to OI awareness and treatment, are easy to find. But first-person accounts are few and far between. Many afflicted children  never grow old enough to tell their story.

Only a few of us know what it is like  to deal with OI.  How does it feel to constantly break bones? More commonly, what is it really like to be in a wheelchair and see life from my particular point of view?

So, I felt it was my duty to write this book,  to help others in need , now and down the road.

Another reason for writing this memoir is to give others hope. Without hope there is nothing. One can have OI and cope with it, as long as one never gives up.

My mom and dad have always been a strong presence in my life. I feel them even more so now. During the recent months  I believe  they have actively sought to remind me of their love, as if I would ever forget them.

By chance I came across old Army pictures of Dad, taken in his uniform, just before leaving for somewhere in Europe to  gallantly  fight in World War II. I found graying photos of Mom, both when she was young and vibrant with my oldest brother Jim, and later in life, while she was still healthy, looking so graceful and full of life, even in her later years. I stare at the pictures as they stare back at me, as if we are communicating to each other: I miss you.

We were renovating the house this year and as we cleaned out a closet in Mom's old room we unexpectedly found my parents' wedding photo. It's in the book, in an early chapter. This surprise would've been  wonderful  enough to find, however in the same box, on the very bottom, there was my mother's wedding dress. To me it was like finding a precious artifact,, a priceless treasure,  a family relic that was meant to finally see the light of day.

Now slightly yellowing with age, nonetheless  perfect, it is  the  exact wedding gown Mom was wearing in the unearthed photo, taken on February 14- Valentine's Day- 1942. My folks had to be hopeless romantics, like me. My heart melted when I touched the soft fabric and remembered how much she loved me.

I can only imagine what this gown meant to my mother. How she kept it for 71 years until she died. Memories of a happy time in her life, as if the dress she had saved and cherished came alive out of the photo to remind me never to forget her.

Before a recent doctor appointment at Penn,  I checked into registration, like usual. When they asked me to verify the emergency contact, I was ready to  recite Holly's info. Instead the girl looked at me over her computer screen and said "Ann Smith."

Mom's name. How did Mom become my emergency contact? I had only been going to see Penn doctors for three years. Mom was gone six years. Why would I give anyone her information, knowing she had passed?

Maybe the info had somehow been transferred from  the Children's Hospital database, where I spent my time as a child? But that didn't make sense. I stopped going to CHOP once I turned 18, which was in 1974. Were computers even  around then? My father was still alive in 1974. Why wasn't he listed as an emergency contact too? How did the systems cross?

There is probably a logical explanation for the mix-up, not a "Twilight Zone" episode. Still, coincidences have happened like this while I wrote the book. Or maybe it's just because they have been on my mind so much and I noticed these strange experiences more with increased awareness.

My parents live in my heart and soul.  That's all that matters.

Finally, I had a difficult  time deciding how to end this book. I thought long and hard about it, knowing the beginning and ending is always important. Then fate stepped in again .

As you know, music has played a huge part in my life. I read where one of my favorite artists of all-time, the late, great Jim Croce, is being honored soon by the state of Pennsylvania. His old barn near Reading, Pa., where he wrote many of his classic songs, such as "Time In A Bottle" and " Bad, Bad Leroy Brown," will have a blue historical marker nearby.

Croce died in a tragic plane crash  on September 20,  1973, leaving behind a wife (Ingrid) and a  little boy ( A.J.) He was only 30 years old.

 Jim ( a Philadelphian) was a brilliant singer/songwriter who was just coming into his own when he died. He recorded his last album, titled "I Got A Name," only weeks before his death. The final song of Jim Croce's final album is called "The Hard Way Every Time."  It sums up my life and my story perfectly.

The melody is hauntingly beautiful. I prefer to listen to the live, acoustic version of the song, done so simply by Jim on guitar, with his music  partner Muary Muehleisen ( Maury, only 24, also perished in the crash along with Jim and four others) accompanying him on acoustic guitar.

The lyrics echo my life as Croce looks back on his own life. He endured "more than a couple of falls" and while "chasing what I thought were moonbeams" he had "run into a couple of walls."

Jim weighs the failures and successes of his life,writing "if you don't bend, well, those are the breaks." You have to take the bad with the good. He manages to balance both the good times and the bad while living life to its fullest, with vigor and passion, with few regrets.

The song means   so much more  when one considers Jim's fate  soon after writing "The Hard Way Every Time."

And in the end, while "looking back at the faces I've been," Jim considers, all in all,"I wouldn't a done it any other way."

Me too. The broken bones ultimately made me a stronger person. The happiness, joy and love in my life overshadowed the pain. So it's true- I wouldn't have done it any other way.

(Place at end of epilogue)