Friday, December 30, 2016

Stretched Hands.

Hi everyone!!! :)

I’ve shut off comments, because this is a blog post purely for documentation. (Although thoughts are always welcome via email), but I had to express that I'm in the best place I’ve ever been in my whole life, and I’m so grateful for life and family and friends and love and opportunity and hope. I'm here because I want to document a few things so they don’t get lost in a paper journal or deleted from a crashed computer.

This has been the biggest year of my life as far as change, as far as growth. Of discovering who I am, who I want to be, and what I need to do to get there. I know most people don’t read blog posts, or they skim them, but there’s something freeing about writing your thoughts down and letting them out for the universe. I do think some things should remain private, but some things are worthy to be shared. Because sometimes words might resonate with someone. If anything, this post can be documentation for my kids when I am gone.

The last decade of my life is like a dark, dark nightmare—but I feel as if I’ve emerged from the murky water and can see clearly for the first time in a long time. I look back, and see how and why my life spiraled down until I hit rock bottom. And how it was necessary so I could climb back. I couldn’t have the happiness and clarity now without having the hardship. And for that, I am forever, FOREVER grateful.

When I first stopped dancing, it was devastating, but it was okay because I wanted to have kids. And I felt such urgency with getting them here (which reasoning later came to fruition when I was diagnosed with Pelvic Congestion Syndrome, Adenomyosis, constant hemorrhaging cysts, & degenerating fibroids which would've made kids impossible).. With our second boy, most of you know that I saw him die for 60 seconds and be brought back by CPR. He now needs daily medication to keep him alive. He can’t survive 24 hrs without it. Addison’s Disease takes constant blood work to make sure he’s thriving and getting what his body needs. If my boy fevers or vomits, his body goes into adrenal shock and shuts down. My family doesn’t even know how many times I’ve seen him go lethargic or pass out, or how many times he’s been hospitalized from it, almost losing him. At least 2-3 times a year. It isn’t something I talk about much, because it’s something I can barely process in my mind. The fear is overwhelming. And I feel if I talk about it, then I’m complaining or seeking attention, when that’s not the case. So I close off whenever I’m in crisis.

This same boy of mine was later diagnosed with APML Leukemia—the most rare form of Leukemia (Only 1 out of every 100,000 Leukemias will be diagnosed with it). Until 1996, this strand of Leukemia was completely fatal.  But months of living in the hospital and years of chemotherapy, he is now in molecular remission. But there are moments that still haunt me: When his blood pressure rocketed to 180 as a 3 year old. How he didn’t ingest a single bite of food for 28 days, until they gave him a feeding tube. Then the years after, where I had to give him IV meds at home (his very life in my hands!), change his dressing where his port was. Use the machine that gave him his food, give him his 14 different medications morning, noon, and night.  He also developed Red Man Syndrome, due to Vancomycin, adding all sorts of complications. Four different types of chemo pumping through his blood (which would later destroy his kidneys). It’s strange, watching traumatic events. I thought I had gotten so used to it, I felt STRONG during that time. That I could handle anything. “We can conquer anything,” was my attitude.

It was a difficult time, but we got through it.

Then I became sick. I had started teaching ballet again, which was SUCH a love of mine. (Taught over 300 students per week). But my health deteriorated. First, I lost all taste. Then, the world wouldn’t stop moving around me. My legs ceased to function. I could barely walk. Test after test after test I was finally diagnosed with Multiple Sclerosis from 3 different doctors.

Life moved on, the best we were able. We had our 4th child. Which, having children was very difficult on me. With the Addison’s Disease gene, we had a 1 in 4 chance that our babies would be affected. And if we had a girl, they would be physically deformed, and have a lifetime of surgeries needed. So, in order to prevent these deformations, with my last 2 babies, I had to go on a horrid medicine that was addictive and made me extremely ill, and nearly impossible to wean off of.  During these pregnancies, I had what was called CVS, where they go in through the stomach with a foot-long needle and cut out pieces of placenta (No numbing!) It’s extremely painful and scary, but necessary so we could grow the DNA of the babies to see if they were affected by the condition or not.  It was agony waiting those months not knowing if we would have a deformed baby or not, or how long I had to stay on the non-FDA approved drug. Luckily, our last two kids were fine.

So I had my first baby at 22, my third at 26 (the eldest had just turned 3), one with cancer and a life-threatening life long condition, I was diagnosed with MS, & endured another high-risk pregnancy and had baby number 4 by the time I was 29. 4 kids in 6 years would make anyone crazy, but add on everything else, I was starting to withdraw from society and just figure out HOW TO SURVIVE each day.

So with teaching ballet being impossible, I started to write. My first book took 1st place in a HarperCollins writing competition out of 30,000 projects. It was an eye opener for me. That I could DO something that helped me escape from the madness of life. It was fun. It gave me purpose. I quickly immersed myself into the writing world and learned all I could about publishing and how it worked.  How to have beautiful prose and learn all the rules. And how I wanted to approach the publishing world. I set my goals, and have stuck with them.

I got my first offer from an agent relatively quick, after which, I received 7 more offers of representation. (Which, for those unfamiliar with the publishing world is a big deal). Other types of agents in the world you pay money for, but in publishing, it’s the agent that chooses to take you on, no money involved until they sell your book & a percentage is taken). I know I made the right agent decision, even though the book that went on sub didn’t get picked up—because of everything I learned. I learned SO much from my beautiful first agent.

I then decided to write another book, & with deep thought decided to go with a more editorial agent. I queried 2 days, before signing with another agency. (Which, in publishing, is crazy fast!) I loved who I worked with for the next year, but in the end, in my gut, I felt it wasn’t the right place for me. So when I received an email with another agent offer and didn’t even have to query my next project, I knew with my whole heart this was the right match and that I was in the right place.

I then got sicker. One night, my whole body went numb and my heart rocketed at a fast pace and I collapsed. My hubby was at school and I was home alone with my 4 kids. It was 10:00 at night. I was able to get out the words, “Kids, I’m not okay,” before I fainted. My 8-year-old boy, being the brave, brilliant boy he is, ran to the next-door neighbor’s in the dark and pounded on the door. Soon the ambulance arrived. I woke up in the ambulance, so confused and positive I was going to die with the way I felt.

I was scheduled the next day for a heart test. (You know, the one where you are hooked up and running on the treadmill?) Well, I was in the hospital, and they were ready for me to run & do the test, but all I did was stand up and my heart rocketed again. They immediately had me lay down and it was obvious on the screen that there was an electrical problem with my heart. So for the next month, I wore a heart monitor day and night trying to figure out what was wrong. Each day I grew weaker. I got sicker. I would go to bed each night positive that I wouldn’t wake up. I know this sounds dramatic, but it is the absolute truth. I’ll never forget the way I felt. The way I’d panic when my heart would go psycho for a minute and the alarm on the monitor would go off… that was a horrid time.

But in my heart (no pun intended), I knew I didn’t have a heart problem, even though the doc had diagnosed me with one. It was something else, my gut told me. So I pleaded with my doctor to do other tests, because I didn’t want to be on heart medication so young. There was no reason to do an MRI, but I convinced him, and during the test, it was then discovered that I had a huge infected cyst in my facial bones that had been growing for over ten years that resulted from a fall I had during one of my dancing shows.

The infection had spread into my bloodstream, hence affecting my heart. Most of the bone in my face was eaten away, and I’ve had 5 surgeries to try and repair. (The infection is still here today, so we’re still trying to figure it out, because my body keeps rejecting the fake bone). Anyway, although the infection keeps coming back, it isn’t on a large scale where it almost killed me before. (It’s true when they say that gum disease can cause heart problems. The cyst was right up there in that location in the bones and went straight to my heart! The doctor had never operated on anything like it in his life! He was so fascinated; he made his assistant take pictures).

But during this period, whether it was the decade of life/death experiences, the constant health problems, the migraines that wouldn’t stop, raising 4 young kids, the high risk pregnancies, the turning down book deals and R & Rs that didn’t feel right, or receiving some rejection, I broke.

I stopped eating. I stopped communicating. I’d stare into space and cry for hours when my kids would leave to go to school… the fear that something would happen to them was paralyzing.  All I could see was my boy dead in the hospital, feel the terror of sitting in the waiting room as he went through his umpteenth surgery. All I could hear was the sound of my 2 year old hit the ground when he fell from a two story window, or see the sight of him laying on the ground with blood all over his head. Or the bi-annual hospitalizations from almost losing our Addison’s Disease boy again and again. And most recently, the nephrologist telling us how worried he was about our boy’s kidneys. (The chemo messed them up) Test after test, the results aren’t good. The past decade and everything that I had experienced (and we had experienced as a family) caught up to me. I shut everyone out. I hurt people’s feelings. I became a person I didn’t recognize. I had no desire to live. No passion. Didn’t want to exist. (Which is another post)

But this year… this. Year.


I wish I could convey the complete change that I’ve undergone. I’ve spoken a bit about therapy and how now horrid memories are now present only in my mind as if I were a third party observer. I see how people reached out to me again and again, and I didn’t respond. And the guilt that I’ve had over that has been consuming. I see how I’ve shut people out and how I need to somehow regain their trust. And I see how some people never gave up on me. I feel such genuine sorrow for not being able to see what I was blind to. When I felt that the world was against me, there were hands stretched out everywhere. I just didn’t see it. I was incapable of seeing it. Which has taught me who I want to be. I want to be the stretched hand. I want to serve and show love. *I* want to be the person who serves. Because through all of this, I’ve been given the greatest gift any of us can have: Compassion.

Yes, this year has still been hard. Moving up to Alaska is a pretty big deal. And I’ve had 3 cysts explode and hemorrhage which has rendered me to vomiting constantly for weeks while trying to dance for the Nutcracker… it’s been painful, and it’s been extremely difficult. …but… I got to live my dream. For so long, all I wanted was to dance on stage again—perform. Like, really perform. On pointe. In a tutu. Have a final goodbye to the person I was. I needed that moment on stage, so I could move on. So I could say goodbye to the old me and move on to be the new me.

 Many things from the past were holding me back. But now, now, all I feel is love. And gratitude. And passion. And excitement. Now is the time for family. And for words. And happiness. I’m excited to write---really write, because I know that I’m meant to tell stories. Reach children so they can feel joy. Feel emotion and humor. Have a healthy escape from real life.

I have so many projects buzzing through my head, and I’m not sure which one will be the one to come to fruition (hopefully all of them), but I want to say to HOLD ON. Please. No matter how dark it gets, or how many demons you have screaming in your ear, hold on. There *is* light ahead. Yes, it might take a while. It took me 13 –ish years, but now, looking back, I wouldn’t want to move forward without knowing what I know now and having learned what I’ve learned. It wouldn’t be nearly as satisfying. I’m grateful for hardship. I’m glad for everything I’ve been through. (Which I know doesn’t even compare to most!---but there’s never comparison) Just sharing my story. A bit of my story.

And I’m sure that you are all thinking of your own experiences and what you’ve been through, and I hope that you can feel that you’re not alone. There are hands reaching out toward you, even if you can’t see them. I know for me, I’m going to do my best to be that hand, as well as be better at seeing them.

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