More Little Lacie

Bee Gees Song of the Day: Love Never Dies

To God above i swear
I only wanna live in the shadow you make
the soul never lies
but love never dies it goes on forever

Little Lacie of the Enormous Brain got some fabulous news. Her insurance company has approved her brain surgery at the premiere institute for her diagnosis. I'm happy. I'm scared. She's scared for herself; this is brain surgery. It's getting closer and more real than ever.

My tiny little friend is strong though. She continues to try to live a life as normal as possible amidst her symptoms; dizziness, crushing headaches, brain fogginess, sensitivity to sounds. She's pretty successful at it; and I think mostly, people tend to forget she is struggling.

We chatted today. "I have been a fighter all my life. I watched my brother die right in front of me ~ I could have fallen apart ~ but I soldiered on. I had two hip surgeries with six weeks in a body cast both times. I had to learn how to walk again ~ twice . I was told I would always walk with a limp and not be athletic, so I threw myself into sports; swim team, soccer, pep squad, ran, rappelled down mountains, climbed peaks. Now it's just brain and spinal surgery. I've always stared down challenges in my life. I don't know how to do it differently."

Lace just wants to be normal again. She "hates being so self absorbed" (can you imagine?) To combat this, she has made friends with other sufferers of Chiari. They seem to want to meet her, to flock to the light that radiates from her. She finds this astounding – because she feels like she fakes her clarity most of the time. It makes sense to me - they need her warmth, her strength and her faith.

Holding other people up is a big responsibility – she's a little thing and now she's this brain tail stuff sticking out of her cranium, but she's still holding people up. She's still working out. She's still going to her daughter's cheer competitions. She's hosting sleep overs for 18 giggly girls, she's still working full time.

But sometimes, people forget that she has needs too. She gives until she's got nothing left to give. She leaves nothing for herself. I think that during the day, the seams start to tear, in her little bag of sanity she keeps so close. The she furiously sews the bag up at night so she can get through the next day.

The reality of her surgery is shoving its face into hers. And it's scary. I don't want her to be scared, or tired, or struggling to keep it all together. I just want her to be better. So we can see the new X-Files movie together when it comes out. So we can just go out for lunch. So we can go to Tibet (we have that all planned out, she'll climb the Himalayas, I'll ride on the back of a little sherpa).

So if you are reading this, say a little prayer for Big Little Lacie. Please. And thank you.