I love movies that thrill you and take you on a ride. Not scary, gore-soaked flicks, but stories where a disaster looms and someone has two hours to save the world. It can be science fiction, like an alien invasion, or a spy story like Mission: Impossible.
The typical thriller has one character who predicts the disaster. He or she is thought to be overreacting as they try to spread their message of impending doom to anyone who will listen.
This is the character who usually ends up in a fatal car accident under suspicious circumstances or locked away in a mental institution. At the end of the movie the lone voice of reason is deemed a hero, but it's usually too late for the poor soul.
It's probably not the best character to identify with.
I'm not saying I always feel like this, but each time we get to another crisis with our daughter, Lizzy, I feel like the crazy person in the movie who knows the aliens are taking over the world and is trying to warn the others.
Ever since Lizzy was six weeks old, I knew something was wrong.
I was holding her in my arms one morning, cooing and singing to her when I realized she wasn't looking at me.
My heart sank, and a feeling of pure panic took hold of me. My legs felt weak, my chest ached, and my body knew this was serious.
I'll always be grateful to my husband for trusting me completely and never once doubting my instinct. I most likely would have ended up howling at the moon had it not been for Joe.
I drove many people crazy as I would discuss my fears that something was wrong with our daughter. I was often told to relax and enjoy my children. And I really wanted to, but something just felt wrong.
We started to look for answers quickly. There were times when it looked like we might be headed in the right direction, but then Lizzy's progress would stall, or a new symptom would emerge, and we would be right back where we started.
It didn't help that Lizzy dumbfounded every specialist, therapist, and teacher we met.
Almost all the visits started the same way. Lizzy would smile and be her adorable self and charm the professional we were seeing. I would start to relax and think maybe I was just blowing things out of proportion.
The therapists and teachers would declare that she only needed a little push to speak. The doctors would look at me as if I was just another over-protective mother.
Then, in the case of almost every specialist we took Lizzy to, there would come a point in the exam when we would see the doctor's face change.
Something did not make sense. Further tests would be required just to rule things out. I would leave the office nervous, but the doctor would usually reassure me that she was probably just fine.
Then would come the calls. Scary diagnoses would be mentioned. More tests. I would be a wreck. My worst fears were being realized.
Then the tests would come back negative, and we would start the ride all over again.
My friends, family, and Lizzy's teachers and therapists would tell me I was doing everything humanly possible.
But something was wrong with my child, and I wouldn't rest until I could get an answer. I could keep myself up trying to think of possible causes.
I was also losing sleep because Lizzy rarely fell asleep before 11:00 p.m. or midnight and then would wake up two or three hours later screaming so loudly you would swear someone was torturing her. She was never quite awake, and then in mid glass-shattering scream, she would just fall back into a deep sleep.
When the "behavior seizures" started to happen during the day, I really thought we were going to need adjoining rooms in an asylum. Of course, people started to see what I meant and I didn't look so crazy after all.
This was of little consolation.
For the last two years things have been pretty quiet for Lizzy.We found a wonderful doctor who has been treating her for a bi-polar disorder that seems to match some of her more difficult behavioral symptoms.
The medicines Lizzy takes allows her and us as a family to have a more normal existence. We've been able to go out for dinner or other outings without fear of a Lizzy explosion.
But then about six weeks ago, she started with this awful cough. The doctors weren't able to confirm it as a case of Whooping Cough, in part because of the difficulty and unreliability of the test. But all her symptoms pointed to this diagnosis.
Her cough was so horrible that it would cause my little girl to throw up to the point where her face had little bruises.
Almost as bad, old behaviors that had been dormant for most of the past two years have returned. Her wild manic behavior is made worse because Lizzy is older and stronger.
I got a note the other day from her teacher that Lizzy insisted that she was Disney's Little Mermaid, Ariel, and would not answer to her own name.
It's at least a small win whenever Lizzy is able to voice what she feels. I have to admit I laughed at that one. But I'm not ready for the notes to come home again. I've enjoyed and gotten used to the "Lizzy had a great day" notes in her communication notebook.
New physical symptoms have come along with the cough and vomiting as well. Lizzy had has started to break out in an odd rash sometimes. It comes and goes very quickly, but it just doesn't seem right to me.
Because Lizzy's overall syndrome lacks a firm diagnosis, we have no template to follow.
We have five MRIs that show significant brain damage, and bones and organs that are growing faster than her age. Yet her hormones and other vitals are normal, and none of the specialists we've seen can say with any certainty what to do.
How do I help my beautiful enigma when some of the best doctors in the country don't know how? I'm just a mom.
I have to confess that in the past when we have found ourselves in this situation, I've been out of control. I've alienated friends and family. I've eaten my weight in chocolate. And we always end up right where we started. No diagnosis.
I'd rather not take another ride on the same roller coaster.
I have a choice. I can handle this crisis like I have the others only to get a similar result or I can change the pattern. I could learn to live in the mess, the uncertainty, even the fear.
Perhaps if I stop fighting the chaos, some normalcy will take hold. Acceptance has always brought me peace, but I have refused to accept that this is the hand that has been dealt my daughter and family. I have struggled and searched for a magic cure or answer when the truth is, none may exist.
It's a bitter pill to swallow, but neither Ethan Hunt (Tom Cruise) nor Jason Bourne (Matt Damon) will burst into my house and save my daughter. But the truth is, I can. Not with a heroic Hollywood happy ending, but in the day-to-day wins of tending to and nurturing a special little girl with some very special needs.
I'm going to have to take this road truly one day at a time and enjoy the road, the ride. In the end it is all I really have. That, and my beautiful enigma named Lizzy.
