Tuesday, July 5, 2011

Wednesday, May 25, 2011

Terri the Dry Cleaning Postal Worker

Know what I just did?  I just mailed my signed contract back to my publisher . . . lovin' the "My Publisher" thing!!!  But, one thing I didn't notice when I read it on the computer was that it needed a witness, so thank you Terri at Scotchies Dry Cleaner (which also has a post office kiosk) who sold me my postage and witnessed my personal historical literary moment. 

Seriously, that lady has mailed off so many CHD fund-raising letters, eBay packages, etc. etc. for us over the years that I'm going to give her one of my personal copies when the book comes out.

Hey world - I'm about to be published!!!! Woo hoo!!!

Thanks Terri!

Thursday, May 19, 2011

Bad News and Good News

You may have noticed my absence (I hope you noticed) from the blog, Twitter, and Facebook for the past week.  There is a reason for that, and bad news first . . . no more freebies.

Yes, I can no longer offer you free-view previews of Half Heart, Whole Life because 1) the title is changing and 2) I GOT A PUBLISHER!!!  so I can't compete with the book by sharing pieces here.

That's right - the book formerly known as Half Heart, Whole Life will be published by Behler Publications in 2012! Woo hoo!!! Contract negotiations this past week resulted in a new contract that we're both happy with and the book will be real.

So, thank you A-Team for your support and encouragement.  Since the book title is changing, I'll probably start blogging over at www.amandaroseadams.com but if you're following me on Twitter, you'll still get my updates.

Ciao for Now!

Wednesday, May 11, 2011

Tomorrow - the Epilogue

Tomorrow is the eighth anniversary of Liam's first open heart surgery.  In honor of that enormous day, I'm going to post my epilogue for all the heart moms out there.  The epilogue's title is:
The Last Word, an Epilogue for my Ladies, or What to Expect when You’re Expecting the Worst

I particularly wanted to share it because of some things I've been reading from heart moms both at www.hypoplasticrighthearts.org and on facebook.  So, please make sure you come back tomorrow to read it.  It's a special day and a special message that hits at the center of Half Heart, Whole Life.

Wednesday, May 4, 2011

An Open Thank You Letter

This is an open letter to the men and women of the CHLA CTICU and, in turn, to every professional performing services at every pediatric ICU the world over.

Dear You,

We, all of human kind, have gifts and limitations.  For instance, I am not gifted with math skills, adequate motor coordination, or impulse control (especially where it pertains to pie).   My gift, however, is the use of words and a little humor.  Tonight I speak for those like me in spirit whose gifts lie elsewhere in thanking You for your gifts, the gift of healing and the gift of hope.

Eight years ago this very night, I left my six day old son Liam in a Colorado NICU at 11:00 pm as the attending cut down his wrist to place a central line into his heart.  The next morning, You, in flight gear, with reassuring smiles and kindness put my darling baby in a safety box on wheels and took him away. You don't know this, but I held back my tears until the elevator door closed behind You  because I did not want You to feel any of my pain. Though knowing You as I now do, I'm sure You knew.  You had offered  the jumpseat in the plane to me or my husband Jim, but I was too damaged from my Csection to go or for Jim to leave me behind.  We, had to wait a whole day to see Liam again, but You had him and he was safe with You.

The following day in LA, You were there, all around us.  You made sure I had somewhere  to pump and plenty to drink.  You explained new information about our son's heart.  You gave us the precious, precious hope, like oxygen to our own strangled hearts.  You saved us, and then You saved Liam's life.

You told us jokes.  You kept us calm.  You answered all of our questions and made us better parents.  You made no promises, but You did everything within your power to take Liam and his half heart down to the River Styx to plead our case to the ferry man.  Then You came back with our son.   You kept him alive after You tore his body apart to save it, and when we left You, we left with a living child who was destined to die until he met You.  You know this is true.  You knew how close he was, and yet You kept our hope and our child alive.  You chased us away for our sanity and his safety, and You did everything right by Liam. 

You gave us every day we've had since You came on May 5, 2003 to collect our child and offer us hope.  You did this enormous thing just for us, and you do every day all year long for hundreds, and thousands of families all over the world.  You don't just save lives. You save families. You save futures.  You give your gift so effortlessly that I marvel at your grace and am humbled by your goodness.  And, irony of irony, how You are humbled by the truth of it all!  You blush, You shrug, You refuse your rightful due, but You, my heroes among angels, are beyond amazing and deserve my endless gratitude.

Every year, every spring around this time I make an effort to thank You, sometimes in photos or letters to the You that opened Liam's chest for the first of five times.   To that You, Dr. Starnes, You'll never get rid of me, and I'll always be grateful and harassing you with my praise.  You are my own personal Justin Beiber!

But the rest of You - You Dr. Bushman who put Liam under for the first of thirteen twilights, the first one being the most dangerous of them all.  You, Dr. Badran, who comforted us when we needed it and motivated us to learn the map of our son's heart that we needed to navigate his future.  You Dr. Moromisato who called from your home to check on our child.  You, Dr. Takahashi who was so kind and reassuring when we needed to know we weren't out of our depth with our child and who reminded us that after all that mess, Liam was still a normal little baby that we could one day take home.

You, Mark, Judy, Kescia and Darcey and every nurse whose name time robbed from my memory, who kept Liam living even while his chest was still spread open for days.  You the airflight nurse whose picture I have but whose name I can't recall. You, the respiratory and echo and radiology techs.  You the people who brought me fluids to drink. You, Wendy Goodman, who got us into the Ronald McDonald House when we needed it.

You. You. You.  Every last one of You made every day for the rest of Liam's life and every ounce of happiness he brings our family possible.  You are the fountain of happiness that sits between Fountain and Sunset in a bizarre setting that can only be in close proximity to some funky junction to Heaven itself.   You, even if you never laid eyes on Liam, for every other child You've saved, know that my words sixty million times over for every parent like me whose children have crossed your path from LA to Syndey and everywhere in between.  We mean it, You rock!

For every child you lose, for every difficult day you have, remember Liam, remember how grateful we are, and know that even if he was gone tomorrow, we've had eight years that we would never have had with You.  Remember that if you weren't there to help the ones who didn't make it, You couldn't have saved all of them that have.  Remember that those parents who've lost their children are still grateful for the hour, day, week, month or years they had because of what only You could do for them.

You need to know that while You've seen us at our very worst, things get so much better, for MOST of us.  You are not told that often enough.  You never really get to see how close to normal we really do get, and it's all because of You!   Please know how deep my gratitude runs and know that it is merely a reflection of your gift.  You've put so much goodness, hope, and possibility into this world, and it is long overdue that some of it comes back to you. 

Thank You, a million times, Thank You for my son.

Amanda Rose Adams
Mega-fan for Life

Tuesday, May 3, 2011

Between a Dumb Rock and a Dumber Rock

Years ago I signed up for Pulisher's Marketplace's free newsletter service.  I always watch to see what memoirs are coming out and to size up the market for books like mine.  Sigh . . . I would like to share this week's two Memoir Deals with you now.

Actor Ryan O'Neal's PAST IMPERFECT, a candid description of his and Farrah Fawcett's roller coaster of love and loss, from their first meeting in 1979 until her death in June 2009, including the pressures of their respective careers; their inevitable break-up; their emotional reunion after Ryan was diagnosed with leukemia; the devastating news of Farrah's own struggle with cancer; and their last days together; as well as O'Neal's career in Hollywood and his relationship with his daughter Tatum O'Neal, which has been stormy throughout the years as each battled substance abuse problems, the subject of a new reality series, 'Ryan and Tatum: The O'Neals,' that will air on the OWN Network this summer, to Tina Constable at Crown Archetype, with Suzanne O'Neill to edit, for publication in Spring 2012, by Kent Carroll at Europa Editions (World).

20-year-old Levi Johnston's DEER IN THE HEADLIGHTS: My Life in Sarah Palin's Crosshairs, claiming to "tell the truth about my close relationship with the Palins, my sense of Sarah and my perplexing fall from grace -- how I feel and what I've learned," or what the publisher calls a "tale of a misunderstood boy figuring out how to be a man and a father after being thrust into the spotlight and subsequent media circus at a very young and vulnerable age," to Touchstone, for publication in fall 2011.

Perhaps opportunities as a ghost writer of vapid tales might be more promising than writing a true story of an innocent little boy's battle with his own body for survival.  I liked Farrah Fawcett as well as any other little girl of the 1970s, but Ryan O'Neal hit on his own daughter as her funeral (it's true and might be in the book - oh no I may have incited you to read it) and Levi Johnson . . .  people, please!

I mean, really, I have been through so much that I try, lord knows I try, to keep bitterness at bay and focus on the positive.  I'm the eternal optimist and I never give up, but stuff like this (and I use that word stuff in place of a dirtier word that makes more sense) really chaffs my hide. Since when is the guy who knocked up the Governor's daughter and then posed for Playgirl magazine the literary darling of the day?  I guess since Paris Hilton, Snookie, and Bristol have already signed on for book tours.  Sigh . . .


Sunday, May 1, 2011

We Are Family - A Census of the Heartland

When Liam was first born, he was the only CHD baby in the NICU at Presbyterian St. Lukes.  All the other babies in that dark room were extremely premature.  There weren't many, and they were so small that when we sat down to hold Liam, the other children could not be seen behind the half walls of their incubators from across the room.  I can't remember seeing another parent there, even though one or both of us or one of Liam's grandparents was in that unit 18 hours a day. 

We never stopped to gawk at the other babies - that's totally against etiquette. The only glimpses we saw were as we entered the room and the itsy bitsy babies passed through our peripheral vision.  It wasn't until Liam was airlifted to Los Angeles at a week's age that we met our first heart family in person.  Jesse and Valerie's baby Desiree was born on my birthday, five days before Liam.  Desiree wasn't diagnosed with HLHS until she was two days old.  She had her Norwood the week before we arrived in LA.

Jesse was a born again Christian "sleeved" in tattoos.  Valerie was his second wife, and Desiree was their third child together and Valerie's first daughter.  They left their older children in East LA to drive 90 minutes through hellacious traffic to sit with their newborn daughter.

Our second real-life heart family friends were the Bohn's, whose son Colin was born the day of Liam's first open heart surgery.  Colin's parents Jen and Kevin are still our friends.  We're conspiring on getting our two boys to heart camp together in the coming years. In LA we also met Lynn, mom to Wyatt, who is my Facebook friend eight years later.

When it comes to Heart Family, I remember two things about the summer of 2003, 1). Starting Hypoplastic Right Hearts in response to the dearth of information about Liam's condition and 2). The sound of Valerie's voice on my answering machine when she called me after I mailed her a letter to tell me that Desiree hadn't made it to her Glenn. 

That sweet little baby with the tiny red bow in her hair was gone.  Those brave parents who were no different in their love for their child than Jim and I who prayed over Liam, lost their own battle.  I've never had a birthday since when I didn't think of the day Jesse and Valerie were beaming about bringing their daughter home or how short their time together was.

Desiree was the first personal loss I'd felt in my extended heart family.  I was so green then, but I still cry, eight years later, when our brothers and sisters in this fight have to concede the battle ground and bury their children.  When my friend Steve Catoe died last November, I was numb for days.  Sometimes, I can't believe that he's gone, even now.  I feel so blessed to have spent time with him last July in person.

I have never "gotten over" Desiree and I'll never "get over" Steve's death either.  I never stop feeling for the families whose paths diverge from my own.  By the grace of God alone am I still on the battle field for Liam's life, but I am not alone on that battlefield.  Every year 40,000 new babies are born with CHD, and every year 8,000 of them don't make it to their first birthday.  The parents left fighting are just like me - full of the same fears, same fights, same determination to learn what we can and be the best advocates for our kids.  There are 1.8 million CHD survivors in the US and that number grows each year.  We are legion.  We are not alone, yet we feel so alone far too often.

Facebook is amazing in connecting so many of us together.  It's taken what I started with Hypoplastic Right Hearts in 2003 and blown it sky high.  What are we going to do though, now that we're connecting?  How is this family reunion of epic proportion going to advance beyond the necessary emotional support to the advocacy and action necessary to make the research and medical services work for our kids?  What's next, heart family?  Where are we going, and where do we want to go?

I wrote Half Heart, Whole Life, not as catharsis.  Lord knows I have no problem telling anyone and every one about our journey.  Through the years, our  Care Page captured most of what I needed to say.  I wrote the book simply because it was unwritten.  I wrote Half Heart, Whole Life because the world is far too comfortable imagining that babies don't die or that heart disease is for old people.  I wrote it because every time I mention that Liam's had 12 heart surgeries, the first thing non-heart parents say is, "I'm so sorry."  I'm not sorry - I'm glad he's survived those surgeries.  I'm sorry for Liam that he needed them, but I'm never sorry to still be in the fight, and that's something people beyond our heart family don't understand.  I'm trying to change that.

I wrote Half Heart, Whole Life because as much as our heart family is growing and growing together, the rest of the world needs to know how many of us there are and how hard we fight, and we need to work smarter and harder TOGETHER.  It's a rallying cry to share and bond and move forward as a community.  I write about the Heartland in the book, and that's the place where we were once marginalized as parents of children with this chronic and life-threatening condition.  I want it to be a place we celebrate for the strength it holds, a strength it draws from each and every segment of our larger heart family.

Alone we are terrified, together we are unstoppable.  My book is simply more glue to bind us.  Heart Family - post your links to your blogs, your stories, your carepages, your support groups here.  Speak up and be counted.  Just post your child's name or your name if you're a warrior,  and BE COUNTED.  We count.  Speak up and make the world listen.  We are family!