Be brave

When we scheduled the DBS surgery in March we were also rather entrenched in reading and re-reading the "Divergent"

series.  One character tells another repeatedly to "Be Brave".   This is about the same time Sara Bareilles is singing about seeing us all being "brave".  

Since March we have written this statement on our arms, on Libby's arm, on notes to her, on our family message board- well everywhere.  April had these temporary tattoos made and Libby has shared then with a few friends and loved ones.   When the kids were getting ready to take their SAT test, Libby had me passing them out. When one of her school friends was going to interview for a summer job, Libby passed on a temp tattoo.  

So, friends and loved ones, be brave. 

We are two and a half hours into the DBS brain lead placement and be brave.

Libby told a teary eyes nurse that she was "ready" at 7:15 am and then Libby stated very clearly that she is brave.  

Yes, brave.  All of our supporters are.  Love and blessings. 

Ileana 

Eye of the needle

It is by some amazing twist that I am able to write at all.  I had no expectations, no hopes, only a desperate deal with God, the universe, and all things sacred that Libby would wake up from her first round with DBS, the brain stimulators, no worse than she went in.  Even the nurses asked me what we were hoping for.  I had to say that first and foremost I didn't want this kid to have any further damage because of our desperate "Hail Mary" of a radical surgery.   See further discussion in what desperation looks like in the future. 

It is Day 6 after her programming and must say that I am blessed.  Libby is different.  She still cycles through being loose and locked up, but she is looser longer.  

Her speech is clearer.

She is saying things like "my mouth is dry".  What?  You know you have a mouth? You can feel inside of it?  Two weeks ago you could clear your mouth by swallowing while you ate.  She helped to brush her teeth tonight.    

She worked for :45 minutes to form a pout with her mouth. She did it. 

This was day 5 after programming. 

Here she is day 2 after programming.  Holding her head up, on her own and lightly medicated, and rocking her smile. 

We are amazingly blessed. I am holding my breath and am not sure what each minute holds.  Several times since we've been home, I don't want her going to sleep because I don't want to lose who she's been for most of the day. 

All of the worry and fear. The preparation and planning. The amazing support and the personal realizations and repenting. 

We may be heading through the eye of the needle. 

I still have no hopes from day to day, other than no further damage or regression.   

No hopes so I won't be left broken any further. No hopes so I can get up in the morning without fear of being let down. 

I do feel something that is hiding, it may be hope.  There is always hope. 

This blog is amazing and it keeps

Me humble. She lost her daughter on her journey. I have read her blog to prepare myself.  I am full of admiration and gratitude.  Full. 

https://m.facebook.com/sharer.php?u=http%3A%2F%2Fwww.chicagonow.com%2Fmary-tyler-mom%2F2014%2F07%-cake-with-numb-frosting-please%2F&display=popup&_rdr

There is always hope.  I'll let y'all hope for us.  I'll be testing Libby's changing motor skills and asking her questions and singing. Lots of singing with the kid. 

http://youtu.be/_w8vFua_iWk

This has been my theme song for awhile how.  "Eye of the Needle" by Brandi Carlile.