New Year, Same Disease

Last time around this time of the year I was full of hope for 2016

I had been invited to a blogging conference back east by the pharmaceutical company Novartis (#sponsored), Jackson had been making great progress by leaps and bounds, AND he had been seizure free for nigh on 3 years.

Then.  Then 2016 happened.

Say what you want about celebrity deaths and the election of a reality TV star to the highest office in the US–
In the TSC community?  Shit got real.

Let’s get back to that blogging conference.  Novartis contacted several of us “blogging moms” — whom I christened “the real Housewives of TSC” to come back east and discuss the disease : how we all deal with it ,  show us some things they were coming out with , get our input, etc.
There were five of us.
It was so exciting to finally meet in person these women who I had previously only met online.
It was the coolest thing I can think of to sit in a room with these women and talk so openly without explanation.  With understanding.  With empathy and compassion and KNOWING.
You got to to say words like “sega” and “rapamune” without tons of back story.
We kept in touch AFTER the conference too.

And you know what?
I can honestly say, without reservation:
2016 and TSC can suck it.
From each and every last one of  us TSC mommies.

Here’s Becky and Connor from Mixed Up Mommy.  How’s that for a September , eh?
Stephanie & Oliver from Lanier Landing hasn’t had a break in a long time and most of the recent holidays were spent in ER/ICU/Hospital.  Wheeeeee.
Heather and Maddie had their issues as well.
And last but not least there is Larissa and Emmaus’ who ALSO had their time in the ICU.

These are the TSC mommies I met at the conference. They do not include other families I follow and love like Brody’s Buddies and the lovable, awesome DAC.

And then there is us.  We are still dealing with the aftermath of Jackson’s broken leg and osteoporosis.

What I am trying to say is
THE STRUGGLE IS REAL.

So yeah, 2016? You can F*&K right off.
My TSC friends and I would like to raise a hail and hearty “F*&K YOU” And the genetic horse you rode in on.
Take your seizures, your invasive growths, and your neurological nightmares and shove them where the sun don’t shine.

2017 will find us fighting the good fight -as always. It is our way of life.

Oh.  And Novartis? Anytime you want to have us back, we will gladly come back, and come together, and share again.
If for no other reason than to see each each other , to revel in our bond, and to tell YOU and each other:
We are not done.
And we will never be done fighting.