Angelman Syndrome, Life as an Angel

Friday, August 15, 2008

Hey guys, have you heard that new song, "Time of My Life",written by Regie Hamm,sung by David Cook? It was the winner on American Idol. Well most you probably don't know this,but Regie Hamm is one of our own. He has a very special daughter that has Angelman Syndrome. He recently shared the journey that he and his family have been through,to get to the point that they are at in their lives now. It was so very touching,that I asked his permission to share it with all of you. He was kind enough to allow me to do so,here on Bradys blog. So I'm going to paste his blog post below. Get your tissues ready :) Thanks so much for letting us share this Regie and for sharing your life with the world,you and your family are an inspiration to us all. http://www.myspace.com/regiehamm You can copy and paste his myspace addy into your browser. Be sure and check out his music!

"FULL CIRCLE
Category: Dreams and the Supernatural

It was late March of 2003 and my wife and I were sitting in a tourist bus with three other families on a crowded street in Beijing, China. We had all just climbed the Great Wall together and had stopped to buy hats and t-shirts from street vendors on our return back into the city. Yolanda (my wife) and I saw these cheesy little hats that said "Beijing Olympics 2008". We bought them and immediately added them to our fashion ensemble, along with our cargo pants, t-shirts and running shoes. The hats, and the inscriptions on them, seemed insignificant at the time. They did prove to be good conversation pieces, however. Yolanda and I discussed the '08 Olympics with the other families like us, awaiting eight-month-old daughters, on the bus ride back to the hotel.

This was exactly one week before we met our precious Isabella, Xin Meng (which means "new dreams" in Chinese). We were all doing the simple math that would tell us how old our daughters would be in 2008. We all agreed that it would be such a wonderful experience to bring them back for the games and introduce the little girls to the land of their birth. We speculated on whether they would be old enough to understand. We wondered about the in-between years and how we would all be different. Would we have other children? Would our daughters even care about China? Would we all be able to meet again and reminisce about our experiences together? It was indeed an interesting ride back to the hotel and I distinctly remember Yolanda and I deciding then and there that we would make it a point to be at the games in Beijing in '08 with Isabella.

At the time, it wasn't a stretch to believe we would be able to do it. In fact, it wasn't even something we gave a second thought to. If we wanted to go to China we just did it. If we wanted to go anywhere, back then, we just did it. Four days prior to climbing the Great Wall and purchasing tourists hats, I had stood in a record store on Santa Monica boulevard and picked my debut release "American Dreams" out of it's own sleeve in "H" section. My single "Babies" was number 15 on the Adult Contemporary pop chart (with a bullet, as they say) and I was told at my record release party two days prior to that, that I would be touring extensively upon my return from China - "line up a nanny", are the exact words my agent used, "you're going to be gone a lot". I was ready for it. I felt as though I could do no wrong and was living the part I was born to play.

I had gone from a meteoric songwriting career in Christian music, logging twenty one number 1 hits in seven years, Grammy and Dove nominations and walls full of platinum, to landing a record deal with Universal South records as a solo pop artist. My wife had been a very successful promoter in the radio world as well. She was responsible for helping launch some of the biggest names in country music. We were a jet setting, highly paid, well groomed couple who understood success and how to achieve it. We had, however, begun to feel empty in our lives and after learning that we couldn't produce children of our own, decided to go to China and bring home a little girl. That decision would change everything.

One week after the purchase of our "Beijing Olympics 2008" hats, a little girl with a high fever and and a rare genetic disorder was placed in our arms in a hotel in Nan Chung, China. She was the most beautiful thing I'd ever set my eyes on to that point in my life, and she instantly turned me into a different man. The very second she was in my arms, I couldn't bring myself to think about chart positions or tours or CD sales or anything remotely associated with my silly music career. When her sweaty, feverish, quivering little body was next to mine I was from that moment on ...Isabella's daddy. Everything else was a footnote.

The weeks in China, after adopting Isabella, were harrowing, sleep deprived, shocking, eye opening and life altering. Isabella was hospitalized twice in three days. She wouldn't sleep more than an hour at a time. She couldn't hold her head up. Wouldn't eat and didn't smile until the seventh day when I playfully tossed her in the air and she giggled. From that moment on, making her smile became my life's quest.

After two weeks in China, a fourteen-hour flight to LA, a four hour flight to Nashville, and a twenty minute car ride to our Franklin home, we thought we might be out of the woods with Isabella's illnesses. Not so. The next weeks, months and years sent us into turmoil, confusion, heartbreak and financial ruin. Isabella was different and no one could tell us why. We sold our house on five stunning acres and moved into a ranch house that would accommodate a little girl who "might never walk". I stopped touring and lost my record deal by September of 2003. In the haze of it all we were also informed that Isabella would not be covered under our private insurance plan due to her "pre-existing condition" that was, until July of 2007, undiagnosed. So my wife, who had been a highly paid executive with an expense account, took a job at a call center for a company that would provide group insurance coverage for the family. I became a housedad.

With no one interested in signing me to a record label or booking me for shows or using me to produce other artists, I limped along in the songwriting world anonymously for the next several years. I would get up at 5 or 6 in the morning, make Isabella's breakfast, clean her up, then sit her in a high chair next to the piano and write songs while she smiled at me. It was wonderful and terrible at the same time. Isabella was severely delayed with sleep disorders, seizures and no speech. She required full time attention and had to be monitored almost 24 hours a day. Yolanda and I became shift work care givers. Many nights after she would come home from work, we would kiss and I would head out to a club to play for the rest of the night for tips or door money ...or nothing. The years passed and we continued to struggle with Isabella. My career continued to slide into oblivion and my wife became more and more acutely exhausted. In late 2006, we adopted a second child. A glorious baby boy named Gabriel. For all the problems Isabella was born with, Gabe was born perfect and whole and was a Godsend. Our family was complete and we could begin to see the clouds over us lift. The joy of another life in our home awakened us from a five year stupor and made me begin to re-evaluate everything that had happened to us to that point. What constitutes a happy life? What is real success? In short ...what's truly important?

In March of '08, with no publishing deal, no record deal and no career left to speak of, my wife suggested that I try and write a finale song for the American Idol song contest. My friend Scott Krippayne had won it the year before and Yolanda told me "Scott did it last year, why couldn't you do it this year? Please try it - you have nothing to lose". I reluctantly agreed, then immediately thought of the line "taste every moment and live it out loud". That was a Thursday. I went into my office the following Monday and worked through what a "moment" song would sound and feel like. I couldn't bring myself to write about conquest and achievement. None of that rang true for me anymore. I had been living a cautionary tale of hanging your hopes and dreams on material success for the past five years. All I could think of was the need to give in to love, let bitterness burn and embrace the moments we have and people we love. I thought about my shattered career and the words "holding on to things that vanished into the air left me in pieces" washed over me and I briefly felt the sting of it all again. Then I thought about my wife and my daughter and my son and how they were truly all I needed. The words "all that I needed was there all along, within my reach, as close as the beat of my heart" came rolling off my tongue and I knew that it was the truth. I finished the song in five hours. Recorded and mixed it over the next three days and turned it in to the contest website (along with my ten dollar entry fee) the day of the deadline. Three days later, I was notified that my song "may" be in the top twenty. Two days later ...it was. Several weeks later, I was notified that I'd actually won the contest. A week after that, David Cook became the 2008 American Idol winner and performed my song in front of 30 million people. Two and a half months later, it had been downloaded over seven hundred thousand times, was number 3 on the pop AC chart, number 7 on the hot AC chart and had been performed live on TV a dozen times and been used in several TV production pieces. You almost can't ask for more out of a song than that. But then ...

On the eighth day of the eighth month of the eighth year of the new millennium, the opening ceremony of the 2008 Olympic games took place in Beijing, China. I was working in my office and about to finish up and go to bed, when my wife burst through the door in her pajamas. "Get up here - you gotta see this!", she said frantically. I ran upstairs just in time to see the ceremony close to the very words I had written in my office three months earlier. As David Cook sang line after line, my wife and I stood spellbound, watching little Chinese girls walk up and down the same streets we had so casually strolled five years earlier. They looked like our beautiful daughter sleeping in the next room. My wife, needing to be asleep so she could be at her job at five thirty the next morning, was in tears and visibly shaken by the inexplicable nature of it all. All I could do was stare and try to get a handle on the moment. I couldn't then and still can't. We weren't in Beijing with the other three families. Our daughter doesn't know she's chinese and can't tell us how she feels about her birthplace. Barring a medical miracle, she never will. As a family, we were tied to our special circumstances and a trip to China would be completely out of the question for several reasons. But our story - our journey - our personal revelation was there and speaking to the entire world. The weight of it still gives me chills.

I brought a Chinese baby home who's severe special needs condition sent my career and our life as a family into a tailspin. The years of learning and crying and hurting and losing had brought us to the point of letting go of everything. That point had spawned a song that went into the world and did what we could not ...attend the 2008 Olympic games in China. Moments like that can only be engineered by something higher than ourselves. If my life had continued on it's "perfect" course, I'm quite certain I would've never experienced 8/8/08 in that profound of a way. Any plan I could've developed would never have been as beautiful and unexpected. This one was divine.

Sometimes you have to lose everything to gain perspective. You can't see the circle while you're making it. Only at certain, special moments can you pull back and see the reasons for it all. China. Babies. Songs. Music. Dreams. Success. Happiness. They all mean different things to me now. They are all part of a grand mosaic that is in a constant state of immaculate design.

R

posted by angelwings @ 4:55 PM 1 comments

1 Comments:

At 8:11 AM, Kay Bratt said…

Beautiful. Thank you so much for that post. It really opens my eyes to think about the gifts I have right before me.

(tears..)

Kay

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I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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