He felt now that he was not simply close to her, but that he did not know where he ended and she began. ~Leo Tolstoy

Friday, July 29, 2016

Conditions of the Heart, or why we have to tell THAT story...

Note: This isn't entirely, 100% a post about books or writing, but more about highly personal stuff that is related to writing, so if you'd rather just read about book news n' stuff, (and that's totally understandable) quit reading now. To my subscribers, I'm sorry; I don't know how to make this post-only.

I was debating whether to write this or not and found out that I really can't get any writing done on All In until I do. It's just on my mind, this topic, and won't get out until I purge the only way I know how.


Full Tilt is a book about a guy with a very serious heart condition, one that eventually proves fatal. As stated elsewhere, this story wasn't on the agenda. I had other books lined up, but FT was stubborn and muscled its way in and so I wrote it. The upshot or "message" I sought to convey was one of hope and resilience in the face of death, and the enduring power of love that everyone deserves no matter what stage of life they are in.

The bones and structure of FT are extensive research on heart conditions and transplant rejection, while the blood and guts of it is the message to live life fully, and love completely. Full tilt, no stops.

I hit publish, and began work on the sequel, in which the message here is that love, in infinite quantities, lives in all of us, and should be celebrated, not tucked away or neglected because one has loved and lost before. And this was all well and good, and all safely contained in a fictional Las Vegas, and soon to be fictional New Orleans.

Then five nights ago, my 8 year old daughter complained of a rapid heart rate. I could see it, jumping in the hollow of her throat, and feel it in the pounding beneath my hand when I touched her chest.

We had just moved across town, and Stanford Lucille Packard Children's Hospital was now a two minute drive away. I frantically drove her to the ER while the hubs stayed home with our 5 yo. My eldest was rushed in, set up, monitors attached, and the screen showed a heart rate that was in the 220-230 beats per minute (bpm), with no signs of slowing. All the while, she was a trooper; a little scared, a little light-headed, but still able to walk, talk, etc.

The AMAZING doctors and nursing staff at Stanford tried all kinds of tricks to stimulate the vagal nerve and bring her pulse down: having her blow into a tube, cold icepacks on the face, etc, and nothing worked. That left the only option of taking a medicine via IV that 'restarts' the heart rhythm. As a precaution, defibrillators were attached to her chest and back, and a cardiac crash team gathered around the bed in the event that the medicine did more than just slow her heart rate, if you catch my meaning.

Fortunately, the medicine did what it needed to do, and her pulse came down to the 120 area, which is normal for a child her age and size. The cardiologist took a look at her readings and confirmed my daughter has a rare heart condition called Wolff-Parkinson-White syndrome.

WPW  <---link about the syndrome for the curious

This condition is not as dangerous as others but it comes with its own set of complications, risks, and issues. We were released that night around 3 am with a prescription for beta blockers and and appt. with docs on Monday to assess the best course of action going forward.

So here I am, having written about a guy with a heart condition in the blithely detached manner by which we can write about all kinds of issues that we have no personal experience with. Because that's what we do. We make shit up. But maybe, just maybe, certain topics--topics that feel like we have no say in writing about--feel that way because deep down we needed to hear the lessons of those stories out loud.

I think I did.

If there is some driving force or that "everything happens for a reason" then I guess I can say it was meant to be that I wrote FT because its message is no longer merely an ideal I held close and believed in, but now my waking reality.

I treat everyday with my daughter as something special. She slept in our bed for the first two nights after the hospital, and we fell asleep holding hands, with me listening to her breathe. We're closer now. I don't get frustrated or impatient over little things anymore. I flow affection toward her in waves, I tell her--and her little sister, and my husband--that I love them whenever the urge to say it comes to mind. (And that's a lot.) We don't live every day in fear--she's under the best care and not in immediate danger anyway--we strive to live in joy.

We moved, a week prior to all this, from a small apartment in a crappy part of town with a train in the backyard, to a beautiful, big condo on gorgeous grounds filled with greenery and flowers, and a pool. For the first two days, I walked around our new place thinking I'd take post pics of our new dining room (something I'd never had before) or the view outside every window, or a shot of my very own office that I'm sitting in right now.

Now, while I'm still appreciative of where we are now, and how hard we worked to get here, it pales in comparison to my daughter's health. What the hell is a new dining room table to that?

They say that art imitates life. In my case, life imitated art. But I'm not sure I believe in coincidences. I think writers (and all other artists) are speaking with more than just brain synapses and keyboard strokes. The universe told me to put my money where my mouth is. So I did. I will.



  1. I am so glad your daughter is going to be okay. I've been to the ER with my now 12 year old several times but not for anything as serious as that (although a broken humerus was pretty scary).
    They say that God has a plan and it isn't for you to question or wonder about. I'm sure in your research before publishing Full Tilt you had to learn some things about heart conditions. And perhaps that research was what you needed to get your daughter the help she needed. Maybe that was his plan. I don't know. It's possible. No coincidences.

  2. It's possible. At this point, I rule nothing out <3
    I'm sorry to hear about your child. There was a little boy in the space next to ours who had a broken arm and it did not sound fun, poor thing. Maybe not serious, but certainly not something you want to see them endure.

  3. This completely shattered me. I know that your family will have the courage and strength to get through the treatment and along the way you will be proud of the resilience your daughter will show.

    1. I'm sure she'll do great, given the doctors around here are amazing. Thank you so much for you sweet words of support. They really do mean a lot. <3

  4. Wow.... I don't know what to say. I read FT and loved it, it shattered me, really, and I can't imagine what you are going through now.
    I'm sending all my love for you and your daughter, as well as your family. Keep strong! <3

    1. She's doing great now. The rapid pulse is just something that comes on sporadically, apparently. She's back to complaining about chores and bickering with her little sister like a champ. ;) Thank you so much for your kind message. <3

  5. Oh my word!!! I can "deal" with my CHF if it was one of my babies (as a similiar) episode happened with my oldest. Wow. Even more happy Full Tilt was put out there #nocancer. I pray for your baby and please keep us updated. So scary momma, I am sorry!! I marvel at the resilance of kiddos and glad she is hanging in there!! Thank you for sharing with us!

  6. Oh my word!!! I can "deal" with my CHF if it was one of my babies (as a similiar) episode happened with my oldest. Wow. Even more happy Full Tilt was put out there #nocancer. I pray for your baby and please keep us updated. So scary momma, I am sorry!! I marvel at the resilance of kiddos and glad she is hanging in there!! Thank you for sharing with us!

    1. Thank you. We're not out of the woods yet--turns out she needs an MRI for some potential structural issue, but she's doing great. :)