Wednesday, March 27, 2013

Carry On...

Happy (perhaps?) spring! As usual I am still missing my blog and my sanity that comes with depositing my woes here, chalking it up to the new norm. What prompts two visits to said blog in a week, you ask? We’ve come full circle; it was exactly one year ago that Ava received a CDKL5 diagnosis.

Happy Diagnosis Anniversary, I guess?

It’s perhaps impossible for the non-chronically ill folk to understand the shit storm 6-years of wandering the halls of a health care institution, the size of a regional Children’s Hospital brings. The spectrum (health, education, medical, social) of disability systems is horribly dismantled, complicated at best and we still live in that reality everyday but Ava’s health care has improved dramatically with a diagnosis. To be frank most doctors are never wrong and still tend to practice in a paternalistic manner. That combination is dangerous and insulting. I’ve played more rounds of Hot Potato with these a**holes than my childhood ever granted. I am finally past the anger (and naivety) that comes with this style of practice and using my knowledge productively.

Polishing advocacy skills is a daily duty for me, living, learning, growing.

I am still making peace with our (mainly Ava’s) life but I’m pretty sure that I have found peace within myself. And thank those CDKL5 gods for allowing around 35 of us crazy ladies a life changing, New York City trip. My soul was cleansed, my heart warmed, and I was reacquainted with some peace I hadn’t felt for years. There was no particular moment of clarity rather the collective experience of coming together with a group of women who have walked the path, laid eyes on the exact beast. Forever in my heart!

We heard Fun a lot while in the city, appropriate don’t you think?

'Cause here we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
Sun will come
We will find our way home

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

3 comments:

Me said...

Well Said My friend!!!

Deana said...

Here's to more peace in the answers, and friendships in the journey.

Anonymous said...

Thank you...a beautiful post!