Monday, December 2, 2013
Wednesday, November 27, 2013
I want to thank Scott Price for allowing us to share his recent personal reflections for this week of Thanksgiving. Scott and his wife Laura have responded to a calling from God to adopt several children with special needs. Their daughter, Vicki, was able to return home last week after being hospitalized for 28 days with a life-threatening infection. Scott first shared this story on Vicki’s CaringBridge blog three weeks ago and it spoke volumes to me about the power and purposes of our sovereign God. It stirred me to marvel and give thanks to Him. I trust it will turn your eyes toward Jesus also.
A DELICATE BALANCE by Scott Price
Vicki is in somewhat of a pattern. As evening and night roll around, she likes to "party." Well, maybe party is an overstatement but when there are a lot of people in your room, that should qualify as a party. (We do have one staff person that's on a mission to get a disco ball in the room, but that's another post).
She tends to raise her temp and have a harder time breathing late in the evening and during the night. That brings in the "party." With these things, she worries her doctors, so they draw labs, do respiratory treatments, alter medications and then she decides the party is over and goes back to sleep—about 5 a.m. Last night was just such a "party."
As I ponder this journey, what I am most amazed by is how our bodies are in an extremely delicate internal balance a majority of the time. Consider all of the things you don't think about like breathing or your temperature. Your body just does it! For me, it reinforces my faith in our Almighty God and the fact that He created us. There's just no way that this delicate internal balance we were given somehow arose out of a combo of gases, or from an evolutionary process, or whatever other theories have been concocted over the years. A wise and awesome God thought everything through and came up with this amazing and wonderful design.
What reinforces this great design is how we as nurses, doctors, other staff, and parents are trying desperately to keep Vicki in some sort of balance. We've done a myriad of things with over a half dozen doctors, the lab, countless nurses, Laura, me, and a couple of PCAs observing, getting tests, attempting interventions, and of course praying to keep her scales level.
Early on when we tried one thing, it tipped another thing out of balance. She was on a seesaw for many days. Now the seesaw still tips back and forth, but it is much less dramatic. And it's amazing how one little thing like raising the head of her bed at the wrong time or feeding her too fast can send the seesaw into wild swings.
All of these things just circle me back to an amazing design by a God that really knew (and knows) what He's doing. He told us this was true in the book of Romans:
"For since the creation of the world God's invisible qualities—his eternal power and divine nature—have been clearly seen, being understood from what has been made, so that people are without excuse." Romans 1:20
This amazing balance that resides in each of us should cause us first to pause at how well it works but then second to realize that God made us and we need to thank Him for that.
Happy Thanksgiving, friends!
“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14
Thursday, November 21, 2013
“Maybe you have to lose everything you really want, to ﬁnd out what you really need. Maybe a song can change the world...or at least a small corner of it. Maybe life really is more beautiful than any of us could ever imagine, and in rare moments, God pulls back the curtain and whispers in your ear, ‘See...It’s all going to be ok...’” —Regie Hamm
Normally, I would not use this venue so specifically for the promotion of a product, service, organization or person. But, today I’m making an exception for some dear friends and a project I believe God is already using for very important purposes on many levels.
I’m so excited to tell you about One More Song and the Regie and Yolanda Hamm family. Believe it or not, it is highly probable that you already know Regie’s work even if you don’t recognize his name. Regie Hamm is a songwriter with more than twenty #1 hits. He is also an extraordinary recording artist, producer and author. Regie has been named SESAC’s Songwriter of the Year four times and has had over 400 songs recorded by various artists. That more-than-impressive list includes Clay Aiken, Kenny Loggins, Maxi Priest, Bob Carlisle, Jaci Valeasquez, Clay Crosse, Russ Taff, Mark Schultz, Point of Grace, MercyMe and the Backstreet Boys. He has been nominated three times for Dove Awards.
But one of Regie’s most recognized career moments came in 2008 when David Cook won American Idol and sang Regie’s song Time of My Life. An instant smash hit, Time of My Life rose to #1 and became the longest running Billboard Adult Contemporary chart topper of all time.
The song Time of My Life also galvanized the AngelmanSyndrome community. I will never forget the night of the 2008 American Idol finale. It was a beautiful evening and I was sitting in a lawn chair watching our daughter Alex play soccer with my cell phone pressed up to my ear. Just a few days earlier, we had learned that the winner would sing Regie’s song that night. I waited anxiously to hear it live over my cell phone as our daughter Erin held our house phone up to the TV for me. Tears streamed down my face while soccer fans cheered obliviously around me.
In that moment, and even more in the weeks and years to come, it was a song that represented deep things for our family. First it established a public kinship between us and families like ours who were wrestling mightily with something few had ever heard of—a rare disorder called Angelman Syndrome. Regie was inspired to write the song out of his experiences raising his daughter Bella who has Angelman Syndrome like our daughter Carly. It wasn’t long after hearing that song when Larry and I first met the Regie and his wife, Yolanda. That friendship is today among the most precious relationships Larry and I enjoy. This is a family we highly respect, resonate deeply with, pray often with, have a lot of fun with, change diapers with, cry with, dream with and learn more than we ever thought we could learn with.
Two weeks ago, a Kick Starter campaign was launched to raise some additional funds for the documentary One More Song that Regie and Devin Pense are producing. (Devin’s experience includes work with the Discovery Channel and serving as Director of Production for the Oprah Winfrey Network.)
As Regie has described, the film chronicles his family’s journey “from the precipice of super stardom in the music world, through the adoption of a Chinese orphan with a rare genetic disorder, into the low lands of dealing with her disorder and the loss of a career; from the re-invention of a marriage to the heights of winning an arbitrary song contest and having that song become an almost Divine source of redemption for a beleaguered family, as well as it becoming a focal point for many other families around the world. The story—as stories go—is a really good one. I couldn't have written it. I wouldn't have written it. Instead, I was chosen (in some weird way) to live it.” (Read Regie’s full blog post.)
Few people have the kind of compelling story, artistic genius and networking resources to create a project like this documentary will be. Even fewer have the funding resources to do it. With all of those connections and successes, you might wonder why these people need backers like you and me. Well, I’ve hinted at that in other blog posts (see my "Movie Nights with Purpose" post if you want an example) and it’s a complex answer. The plain and simple of it is that this project, like any new venture, needs investors to spur it on with physical, emotional and spiritual resources. Larry and I are coming alongside this project in prayer, finances, encouragement and promotional support. We hope you will too.
Listen to Regie’s heart as he describes the vision for this film:
“We want to present a compelling story on screen that takes people on a journey of emotion and leaves them feeling connected to the triumph of the human spirit and closer to the mystery of (dare I say) God. This story is about music and drama and dreams lost and new ones revealed and love re-born and worlds colliding and geopolitical monoliths intertwining and the depths of the human condition and the recesses of the human genome. It's about TV shows and emergency rooms and whiskey and Jesus. It's about Chinese orphans and American rock stars. It's about one-level houses and the opening ceremonies of the Olympic games. It takes you around the world and makes you look unflinchingly into the eyes of love ...and it has a happy ending (of sorts). Through that story, we also want people to walk away knowing what Angelman Syndrome is.”
The broader vision for this project is actually a feature film. And there are folks in some wonderful places (like Ryan Seacrest Productions) who are anxiously hoping for that project to fall into place. But a project of that scope requires massive amounts of money. So until all those “moving parts” are in place, it has been suggested that the story first be introduced as a documentary. Regie could have waited it out and bided his time for a full feature. But this is a man who knows that every day he waits is another day when a child goes undiagnosed and a family struggles for hope and help.
Regie believes (and I agree) that beginning with the One More Song documentary “helps us (folks promoting Angelman Syndrome awareness) stay on the radar. It’s my opinion that awareness is the most important thing we can achieve in the quest for cures and therapies. Until the masses know about this syndrome and have some compelling reason to get behind it, we will continue to be relegated to the fringes.”
AngelmanSyndrome is the severe genetic disorder. Regie and Yolanda’s daughter, Bella, has it. Our daughter Carly has it. Over half of children who have it are wrongly diagnosed before they finally learn the truth and are able to access the specific medical care and therapies they need.
There are only two weeks left before the Kick Starter deadline and I’m praying with passion that this story will reach a large audience and soon! Two weeks, friends. That’s what we have to help make this happen. Every contributor gets something too, depending on your level of investment — signed books or DVDs, digital downloads, tickets for the premier in Franklin, Tennessee. Beyond the “giveaways” though, all of us coming alongside the producers of this project will get to experience the joy and satisfaction of knowing we’ve been part of telling a powerful Glory Story (a contemporary encounter with the ever-present, ageless God who is always near, compassionate, powerful and purposeful in His ways). It’s an easy gift to give when you know it has God’s hand all over it and you’re giving something back to the world that you couldn’t give all by yourself!
Please follow this link to make a contribution of any size and to read more about this very exciting project!
If you want to support research of Angelman Syndrome, please go to http://www.angelman.org/ or http://www.cureangelman.org/.
And if you want see more of the heart and beauty of this family, just watch how they said “thank you” last week to everyone who has joined them on this journey so far:
Thank you so much for reading all the way to the end! I know it’s a lot to expect that you would give me your attention for this. Your willingness to follow this story and consider backing the project is a precious gift and very encouraging—to the Hamms and to the Jamiesons. I hope you will also pray for the project and tell others about it (and talk about Angelman Syndrome). Even as we all enjoy the entertainment this great story will be, God will be working to change lives—with one more song and one big dream.