Dysautonomia-A Mother's View

All of my children have Dysautonomia. My oldest has it the worst.

The way the body is put together is so complex it's amazing. You have two systems that work together-the sympathetic and the parasympathetic. They work together separately if that makes sense. When one system says go, the other says stop. That way, most people don't have a heart rate that will beat too fast or too slow.

These systems work under the autonomic system. In other words, the job they do is supposed to happen automatically. Now what do you think happens when one or both of them don't work the way they're supposed to? You got it, chaos can reign inside the body. The heart rate will beat too fast one minute (200 bpm resting in one case) or it will beat too slow (50 bpm in another case).

When people without Dysautonomia stand up, the blood pressure (bp) automatically adjusts itself. In people with Dysautonomia, it can drop so low they pass out. Or it can go high such as one recorded reading of (193/133).

People with Dysautonomia have problems with body temperature control, gastro problems, heat intolerance and the list goes on.

Certain types of Dysautonomia are fatal.

Those are just a few of the facts. Now let me tell you what I've witnessed in the lives of my children. Lips turning blue-one mom called it hypoxia, fainting, chest pain, dizziness, temporary loss of vision, wheelchair bound, bedridden. Struggle to find medical help. Mounting medical bills. Getting labeled. "All in her head" when she was only nine years old. She corrected the doctor very firmly "It is my heart that hurts, not my head."

Doctors who scoff (because when they don't know the answer, either it doesn't exist or the patient is mental), nurses who make fun. A ten year search for answers.

One doctor put her in the hospital because he was frustrated he couldn't just hand her a bottle of pills and POOF! she was cured. In the hospital with all the machines attached to her, he was then able to see with his own previous disbelieving self her heart rate swing too high, her blood pressure go too low, the fainting, the wacky way her body responded. That point was the catalyst.

From there we were directed to an autonomic specialist 13 hours from our home. Someone who understood the autonomic system and what can happen when it's not working correctly. He started daughter on the right treatment. Out of the wheelchair, no longer bedridden. Rejoicing.

Hearing 'chronic, no cure'. Deflating. Oh. Why God? Why? There has to be a reason! What is the purpose?

Watch her sleep. Is she breathing? Please God, don't take my baby. She's found on the floor. Heard nine year old scream, "She's dead!" Run upstairs, heart thundering.

Worsening condition. Violent tremors. Sprained wrists from the tremors. Sprained ankles when they begin in her legs. Are they related to medicines? If she stops one medicine will the tremors stop? (ohpleaseGod, ohpleaseGod, ohpleaseGod).

Not caused by medicine. Another girl with Dysautonomia has them too.

My heart aches. No.

Through it all, she jokes and laughs. When she falls down, she falls into the arms of her faith in an Almighty Father.

Sometimes...

I struggle.

Sometimes....

I am...

Angry at God. Angry at people. Angry at doctors. No one understands how heartbreaking it is to watch her suffer, to long to trade my health for hers.

Sometimes...

I am...

Walking the valley of weeping.

I'd like to wrap this post up with a pretty bow and tell you that I've come to terms with watching my kids suffer. That in my huge vat of faith (Ha!) I always find peace and serenity trusting that God has it all under control. But the truth is, I don't.

Sometimes...

My fear is a caged animal.

Sometimes...

It roams free and tries to devour me.

Shallow Water

There's a song I like by Kevin Sharp and in it, he says 'this is shallow water, baby'. That's what a rough draft is. Shallow water. When we edit we dig deeper, we wade out further to find what's swimming just beneath the surface.

Sometimes I can see the treasures glistening in one of my unedited manuscripts and sometimes all I can see is the murky bottom, but I'm still trying.

Teenage Writers

Writing is a rough road for even the most prolific adult. Learning the ropes can be a difficult, up a steep hill battle. Knowing where to find helpful tips, markets and other information to make the journey smoother can help ease the way. There's a website at Today's Teen Writer that works hard to help teen writers learn the ins and outs of the writing world. This site also has interviews from some of the top authors including New York Times Best Selling Author Jay Asher, the incredible writer of the novel Thirteen Reasons Why, one of the most powerful young adult novels I've ever read.

Mimicry Writers

I will sometimes mentor new writers who ask for help. Over and over again they tell me the same thing. They want to write like their favorite author. They ask 'Why am I not as good?' I tell each one the same thing. You need to spend some time working on your craft. A writer will write.

If God had wanted you to write like Debbie Macomber (a very lovely author I've had the pleasure of meeting in person) then He would have made you Debbie Macomber. But He didn't. And if He gave you the talent to write, it means He wants you to write as YOU using your life experiences, your personality.

So don't be a mimcry of another author. Be an original and bring the world the stories God intended you to write.

Writers Running From Success

Tomorrow is the last day you have to get anything done in the month of August. September is arriving. Did you get all your good intentions completed for August? If you don't set goals, both short term and long, you might be the reason why you aren't where you want to be in your writing career.

You want to know how to run from success? Don't set goals. Don't set deadlines to complete your projects. In other words, procrastinate. Why reach for success when you can merely dream about it? Did you know that one of the reasons why some writers never achieve their dreams is because they place 'road out ahead' signs and block their way?

"Well, I'm not that good in grammar or spelling..." ROAD OUT AHEAD

"I can't find the time to write, I'm so busy with other things..." ROAD OUT AHEAD

"My writing isn't as good as Mrs. Big Famous Author..." ROAD OUT AHEAD

I'll let you in a little secret. I am a born again procrastinator. What's that mean? It means I was the president of procrastinators and then I realized a few years ago that my life was marching forward full steam ahead even if I accomplished nothing. If I spend hours playing Majongg (LOVE that game!) or surfing the Internet reading the news (I'm a news junkie) then I've filled valuable 'could have reached for a dream' hours with mundane, non important things. Things that won't change my life or someone else's. Will stand in the way like a road out sign.

I made the determination that I would never let a day go by without writing something that moves me closer to my goal.

Now I'm going to get real personal. I'm so determined to keep that goal and grab my dream (hitting the New York Times Best Seller list) that I've written in the bathroom at almost 3 AM in the morning, so bleary eyed I could barely see the notebook I had in hand. But the day had been filled with things I had to take care of and that 3 AM time was all I had left. I've written when I was so heartbroken I thought I would pass out from the pain. I've written when I was sure the only thing I could excel at writing was a grocery list.

Next week will come and go. So will next month. And the month after that. Then it will be a new year. A new decade. Where will you be with your writing then?

Can You Hear Me?

I read a blog at http://stephanieshackelford.com/blog/index.php/2009/08/ that asked if anyone was listening. The blog has a soft, beautiful pastel color and a gorgeous picture at the top. The writing is great. But like all writers feel, it's not enough simply to write. We want to share our work with others.

When you have a blog and you want others to read it, it's not enough to post and hope that alone will draw in readers. You have to get the word out there. You have to market your blog. Tell people you're out there. Post on blogs, go on a blog tour, talk it up. Put the power of social marketing to work for you. Set up a Twitter account about your blog, get a Facebook. You have to do the work to get your name out there to the public. Promotion is the key here.

If God wants you to write the blog, can't He bring the people in? Absolutely, but the Bible is filled with example after example of where God told the people to do something and until those people took that first step, God didn't act. So take the first step. Start what He's told you to do, then step out and tell others about it.

You never know who's reading your blog especially if they don't comment. You don't know that your words won't inspire someone or help a hurting heart. You just never know. So keep writing even if it seems you're the only person in blogland.

Dreaming...

Fall is on the way! It's one of my top two favorite times of the year. I love the way all the trees turn golden or crimson leaves into a covering for the ground. I love the chill in the air, the little nip that lets you know summer is officially over.

I look forward to hot chocolate while cuddled beneath a quilt on the sofa. I love the smell of woodsmoke in the air and I love the planning and cooking that goes into holiday meals.

I have this dream that someday I'm a New York Times Best Selling Author and I live in a large home with lots of trees surrounding it. I have an office with a floor to ceiling window and from there, I can write and watch the beautiful world God created.