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Wednesday, November 21, 2012

Closer to Fine: An epiphany courtesy of the Indigo Girls.

"Music expresses that which cannot be said and on which it is impossible to be silent."
- Victor Hugo, Hugo's Works: William Shakespeare

I used to think discussing the importance of music and song lyrics was as interesting as discussing the importance of someone else's dream. It's really only fascinating to the person who had the dream.

I also used to think those who professed such love and devotion to music and the part it plays in one's life were bordering on hippie. Artsy, maybe. To which I inwardly replied - Cool story, Bro.

Then the other shoe dropped in my own life, the earth shook under my feet, my life would never be the same. I clung to song lyrics as if it was advice from a paid professional. And one day I looked down and realized two of the tattoos on my body were inspired

I was one of those people. I am one of those people.

So it was to my surprise that I found myself in tears from an epiphany after listening to a song by the Indigo Girls. Indigo Girls from like the 90's? Yup. Those Indigo Girls.

Strange as it may seem, eleven years ago in college I took a class in philosophy of western religions. There was an eager overachiever giving a presentation analyzing a song by the Indigo Girls. The song was Closer To Fine. Now, I admit, I was only half paying attention. But he lectured and analyzed the song, lyric by lyric.

Fast forward eleven years. A few months ago I had just come home from the Near Drown Tribe Retreat in Seattle. I was feeling pretty high on life, elated, joyous, walking on air, you get the picture. One of the women at the retreat created a CD of songs for all of us. They were great songs, too. Four songs in, I hear the Indigo Girls. A song from eleven years ago in that one college course where I was only half listening. So I decided to listen.

Well darkness has a hunger that's insatiable
And lightness has a call that's hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety til I sank it, I'm crawling on your shore.

Whoa. I was listening. I was paying attention. The first thought I could muster was my struggle with God and the why's and how's. The words reminded me how easy it was to fall into this dark pit and how I knew people who frequently visited that dark pit, some even lived there.

I felt safe in my anger toward God, and then I sank that ship with all my fury. And there I was. Crawling and begging for answers and with none in sight.

Yes, I'm analyzing. Remember? I'm one of those people.

But then the bubble burst, the flood gates opened, the enlightenment commenced. In a good way.

I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountain
There's more than one answer to these questions
Pointing me in a crooked line
The less I seek my source for some definitive
The closer I am to fine

[Bubble Burst]

We go to the Bible, we go through the workout
We read up on revival and we stand up for the lookout
There's more than one answer to these questions
Pointing me in a crooked line
The less I seek my source for some definitive
The closer I am to fine

I literally went from pure elation to tears. Like ugly cry tears. Not sad tears. But a moment of clarity. I had been wondering why I felt so happy and even feeling a tad guilty for it. Now, you all might be thinking that perhaps the way I related to the song was by moving away from God. Seeking Him less.


That's not how I see it at all.

The moment I stopped hounding God and Jesus and the Bible and religion for answers is the moment I was set free. Of course, I seek God in all that I do. I find comfort in prayer. My epiphany wasn't about leaving God or not trusting. In fact, it was quite the opposite.

It was about accepting that maybe I would never get answers and being okay with that. I had been figuratively clinging to God, shaking Him by the shirt and demanding WHY?!?!?!

And then I let go. Because there might be more than one answer to these questions. There might be more reasons than I will ever understand. And the moment I started to accept this, the closer I was to fine.

It was all wrapped up in a tidy little package. A lesson in finding happiness and allowing myself to Let it be - also a song reference, tattooed on my right foot.

There you have it. I am a student of the Indigo Girls eleven years later. I'm one of those people who talks about life through song lyrics. And I'm getting closer to fine.

And thank you for the ridiculously amazing CD, Amy!
Thursday, November 15, 2012

Amazing YES.

So about that surgery...

...we postponed it. Not begrudgingly.

Our household was sick last weekend. Our household minus Christian. He was just fine, thankfully. But Mom was sick. And when Mom is sick, everything stops. Well, I wish everything stopped, but that doesn't really happen, so I just complete was is absolutely necessary.

Lola was sick, too. And her poor little throat gets mighty croupy any time she gets sick. It's very scary. And it keeps her up all night.

My cold + Lola's croupy cough + Lola's 103 degree temperature + My lack of sleep from waking up every half hour + Lola's rapid heart beat and quick respiration + Did I mention I was sick, too? + We have to check in for surgery at 5:30 in the morning for an 8:30 surgery time = Yeah, right. This is not happening.

So we postponed without feeling the least bit guilty. And we didn't want Christian catching any of our yuckies while having to recover from surgery. Something tells me that would have been semi-nightmarish. No matter. He didn't have surgery and he didn't catch the cold (yet). Win-win.

We are also expecting a augmentative communication evaluation soon. This process has literally taken almost a year to come to fruition and I have no idea why. But here we are, no, not this month. January! It might seem like more waiting, and it is, but I don't mind. January feels new. December is so busy they don't even administer evaluations. Fine by me! We are busy, too, so January it is! We did have a glimmer of hope at the prospect of being seen sooner, like today! But then we got a call that they didn't bring the necessary equipment to accurately assess Christian. Wind exit sail. There might be a slim, teeny chance Christian could possibly be ready to test out an eye gaze talker, so what we will do is a preliminary evaluation with eye gaze talker representatives so we'll have even more information for the big evaluation in January.

There is also a study in San Antonio involving brain scans of children with severe non-birth related damage that some of our friends are doing. The study takes high resolution pictures of the brain and evaluates its potential function in a resting state. The goal is to compare it with a typical child of the same age. This has never been done before and it might provide answers to how much the brain of an injured child functions, giving parents and the medical community better insight in how to help children like Christian. That's the positive outlook anyway. It looked like Christian would be a great candidate, but then we found out that having a VNS implant is a disqualifier. Something to do with the magnetizing power of the MRI. Rats! But I'm still excited that there is even a study paying attention and looking for answers in our kiddos. We'll be rooting from the sidelines on this one.

So we got a few NO's this week. It's discouraging. It calls for the box of brownie mix Lola has been asking us to bake for five days to finally make a chocolaty showing. But I'm thankful for the NO's because without them we wouldn't know how amazing YES feels, right?

Oh, and today when I took Christian to school, I wheeled him into his classroom and a tiny girl in a purple shirt ran up to him and yelled, "Christian!" and threw her arms around him. I guess she is a classmate of Christian's and she loves him. He is her favorite. I noticed she had a Thomas sticker on her hand and I told Christian about it. So she took it off and ripped it in half, giving half of the ripped sticker to Christian.

God, I love compassionate and loving kids and I love the parents who create them. It was an amazing YES.

Thursday, November 8, 2012

Surgery Monday.

So I've been kind of ignoring something for a while and haven't mentioned it because of the aforementioned ignoring.

Christian is having surgery on Monday morning.

I kept meaning to at least mention it here and there but I would forget and, again, ignore it. And now here it is. It was supposed to happen tomorrow, but because we have to take extra care of his breathing under anesthesia, it will be Monday morning in the hospital.

The surgery is called a Bilateral Hemiepiphysiodesis for the distal femur and proximal tibia. Hemi-whaaa?

It's a big, long name for a small, outpatient surgery. Yes, I said OUTPATIENT!

So why are we doing this? Well, Christian's hips are coming out of socket. They have been for a while and it's something we know will happen. Christian doesn't have normal weight baring and mixed with high spasticity and tone, hip dislocation is inevitable. One option is a double pelvic osteotomy. This option, through surgery, attempts to put the hip back in the socket. It's a hard surgery and involves a body cast from the waste down for six weeks. Many times, these surgeries have to be redone. It's successful for some, and not for others. It's something we're trying to avoid.

While looking at Christian's hip x-rays, legs, and knees, our ortho doctor suggested this surgery that basically consists of an incision on the inside of both knees. I'm a visual person so these pictures helped me see it better.

If you'd like to learn more about the surgery and procedure, visit

This is what Christian's legs look like.

See how he is knock-kneed? His knees bow in and his bones are growing in that direction.

This isn't just aesthetic. This relates to the hips in that Christian has external rotation. This means his legs extend and turn out. This actually would protect his hips if not for the tone pulling his knees in. His knees pulling in puts pressure on the hips and pulls them out.

So the ortho suggested doing this surgery to take pressure off the knees. Presumably, this will take pressure off his hips and straighten out his legs. The whole point is to stave off a the big, bad hip surgery for as long as possible.

We'll go in Monday morning and take him home right after surgery. Recovery will hopefully be quick. Please keep us in your thoughts and prayers Monday morning.

Sunday, November 4, 2012

All Souls Procession - Celebrating the wonderful.

It was the annual All Souls Procession! It is my favorite parade of the year!

The All Souls Procession is in honor of the Day of the Dead and it's become kind of a big deal in Tucson. It comes from the Mexican tradition of honoring and celebrating loved ones who have passed.

This parade is kind a Day of the Dead inspired mish mash of community outreach, political causes, traditional Mexican culture, paper mache floats, mobile shrines, fire balls, and people on stilts. It's wild and quirky and with heavy drum beats and Mariachi music serving as the background, I enjoy every minute we're there. I say that, specifically, because we always get there late. But I digress.

When people think of the Day of the Dead they think of skeleton faced bride and grooms. They think of folksy figurines and trendy t-shirts. Yes, the parade does have a fun and upbeat atmosphere. That's why it grows every year!

My munchkins were totally impressed. Can't you tell? Actually, Christian is tired and Lola is a little freaked out. Skeletons aren't her favorite thing but she got used to them after she noticed all of us in skeleton face and then everyone in the crowd in skeleton face. Her only requirement was that we use the color pink. So she got a pink heart on her forehead.

The parade is definitely a sight to behold. But the basis of this parade has a deeper meaning that goes beyond what people might think of this celebration. People who walk in the parade actually are mourning loved ones. They are celebrating their dad, their mom, friends, and children. All of the sudden, the celebration is entirely too meaningful to be just trendy.

We got to see Ben's Bells! And if you look toward the middle-bottom right, you'll see a picture of little Ben, who inspired the whole kindness movement. They're remembering and celebrating him.

This procession comes at the end of a tough week in the near drowning community. We lost two of our survivors - Collin and Madison. So it seemed appropriate that I remember them. I wrote their names on my arms and carried them with me.

I read a blog of a woman who recently lost her daughter, Eva, a few months ago. Eva was a classmate of Christian's last year. Her mom beautifully expresses her feelings of missing Eva and quotes the movie, Steel Magnolias.

"I would rather have 30 minutes of wonderful than a lifetime of nothing special."

Tonight was about celebrating the quirky, the folksy, the crazy, and the trendy.

And all the wonderful, too.

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