Hey Cinderella

Maybe it's because of all of the recent royal wedding hype. Or maybe it's because my son has decided that he loves the Disney princess movies. Yes, you read that right. Much to his daddy's dismay, Henry has become infatuated with Sleeping Beauty, Snow White and The Little Mermaid. In defense of his gender identity, he does like the parts with the dragons and other various villains best, but he also doesn't turn away when the princesses don pretty dresses and begin singing of true love. Whatever the cause, I have had a song that I liked when I was younger stuck in my head for the past few weeks.

We believed in fairy tales that day
I watched your father give you away
Your aim was true when the pink bouquet
Fell right into my hands

We danced for hours and we drank champagne
You screamed and laughed when I got up and sang
And then you rode away in a white Mustang
To your castle in the sand

Through the years and the kids and the jobs
And the dreams that lost their way
Do you ever stop and wonder
Do you ever just wanna say

Hey hey, Cinderella, what's the story all about

I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

We're older but no more the wise
We've learned the art of compromise
Sometimes we laugh, sometimes we cry
And sometimes we just break down

We're good now 'cause we have to be
Come to terms with our vanity
Sometimes we still curse gravity
When no one is around

Yeah, our dolls gather dust in the corner of the attic
And bicycles rust in the rain
Still we walk in that fabled shadow
Sometimes we call her name

Hey hey, Cinderella, what's the story all about
I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

(Suzy Bogguss "Hey Cinderella")

I am willing to concede that more than likely, the real reason I began thinking about this song again recently is that I have been feeling very un-Cinderella-like lately. As I watched coverage of the beautiful royal wedding, and as I have watched the Disney movies with Henry, I have found myself scoffing and doing more eye rolling than I have since I was thirteen. It's not the notion of true love. I have never been more sure of true love in my life, and the fact that I have definitely found it. I tell Jason everyday that if he wanted to leave, no one, including me, would blame him. He puts up with so much, and he does it with a positive attitude and unwavering faith. No, it's the idea of the fairy-tale life, the happily ever after, that bothers me.

My life now is about as far from a fairy tale as you can get. It could almost be a spoof of a fairy tale. I sometimes feel like I wake up and hear a voice laughingly saying "Maggie, this is your life. The anti-fairy-tale. Enjoy." Other times, I think of Jack Nicholson's famous line, "What if this is as good as it gets?"

Take the following pictures for example. When I was pregnant with Camille, this is not exactly what I pictured her room, or the rest of our house, to look like. We have begun adding more and more equipment as Camille has developed more and more issues.

Suction Machine

Pulse ox, decompressors, medications

Feeding pump and IV pole

Oxygen Compressor

Stander

And as I type this, I am sitting in a hospital room with Camille, listening to monitors beep and nurses chat with one another out in the hall. This is our second hospitalization this week. Last week at this time, we sat in yet another hospital room in yet another hospital, listening to our daughter struggle to breathe.

Camille has recently begun to have more difficulties that her doctors are still trying to sort out. She had to be put on supplemental oxygen at night because her oxygen levels were dropping too low during sleep. Then, her oxygen levels started dropping even when she was awake. Her heart rate, which has famously dropped very low since she was a few months old, is now dropping lower than ever. A recent echo of her heart showed that her heart muscle appears to be weakening, but no one is sure why, or is willing to concede that this is the cause of her recent issues. Camille has also had GI problems again, after several good months where things had seemed to have settled down GI-wise. She has begun to have increased retching and increased drainage from her g-button site. She has also been choking on her own secretions, and now has to be suctioned frequently. In addition, she has had some unexplained swelling in her abdomen and other parts of her body.

For the time being, we are stuck in what I like to call the "hospital black hole". You come in, and you never know when you are going to get back out. It always seems like we will be here forever. I am struggling to fight the Negative Nancy and Debbie Downer parts of me who want to scream and cry and crawl into a hole and never come out.

That shoe that fit when I was 21 definitely does not fit me now. In fact, it will never fit again.

And if I allow myself to take a deep breath, I realize, that's okay. It is. Deep down, I don't want a fairy tale life because then it wouldn't be mine. A fairy tale life does not include a child with many health needs. It does not include hospital stays and suction machines and oxygen compressors. And while I would give anything for Camille to be healthy, she isn't. She is who she is, but she is mine. She is a part of my imperfect life, a life I am choosing everyday to see as blessed no matter what crazy or difficult thing might be happening.

And I am hoping, and praying desperately, that as I make this conscious choice to see my life in this manner, I will one day wake up to this instead.

"Maggie, this is your life. And isn't it just so good. In fact, it's pretty much as good as it gets."