Beginnings

Liberty and her constant snuggle companion Jar Jar Binx.

Liberty and her beloved Yvonne Perea at our first introduction to Honey House.

One happy girl after the sophomores won the Homecoming Spirit Stick!

All three kids lounging in the super cool lawn chairs. 

I am not sure I can begin it all again.  The old Blog is gone.  I have been emailing Google back and forth and they are trying to find out what has happened.  It just disappeared.  Almost the entire duration of Liberty's saga, all of our trials and amazing victories are gone.  I am just not sure if I can repeat it all. 

And today, this week, we have much going on.  We leave Wednesday for a double appointment at Cook children's.  We are going to for a Neurological consult for Brain stimulation and a baclofen pump trial.  I am still not sure about either.  I feel okay about the baclofen pump, having the meds going straight into her system may help with her brain fog. The brain stimulator is another thing altogether. 

Liberty's Make a Wish wish is still unsure.  She has stuck with Rome being her first choice, but being unsure of the amount of travel and the distance makes this a somewhat scary choice.  Her second choice is Yellowstone.  She loves the idea of New Zealand and seeing Hobbiton, but the 24 hours plus plane ride is very scary.  It will be up to the wish granters as well as the Docs from here on out. Long plane rides and the possibility of jet lag are real ones for us when a change in air pressure put Libby to bed for over 24 hours last week.  Still so grateful.  Amazingly grateful and overwhelmed by thinking of a Wish.   I am still marveling at the fact that I have a child who qualifies for Make a Wish.  What a vastly different world this is, beautiful in its own way!

We were given an amazing IPad from a donor through TurnCenter.  We quickly bought the Speech program ProloQuo2Go and we are off and running.  We had been taking lots of pics with the IPad and the kids had made videos, in an attempt to create a personal album for Miss Liberty.   We ordered the Otterbox the same week we got it and it hadn't come in when we took it with us to see Honey House play in Lubbock weekend before last.  We waited until after everyone left to get to meet the other artists and to talk to Yvonne.  While using the IPad to get a pic with the group it was dropped and the screen is cracked.  We cried all the way home and often the next day. 

Knowing that Libby had been given something we could not afford without ever asking for it, was amazing.  And knowing that it is broken made me sick.  We are taking it with us tomorrow to the nearest Apple store, in Ft. Worth, to try to get the screen fixed.  Praying something will work out.  Managed to get the thank you gift together for the anonymous donor this week and dropped it off.  The donor received a copy of Libby's book "The Incredible Adventures of Sparkles..." .  Praying the donor knows how grateful we are and the amazing difference having the ability to push a button and have people understand our child is making in our lives.  Saying thanks is never enough.  I would NEVER want anyone to think we are not grateful, we are full of thanks, just a bit clumsy, nervous, and exceedingly tired.   

We are indeed blessed.  Beyond measure.

For Liberty's English class, she had to complete her own "Where I'm From" poem modeled after the George Ella Lyon poem.  This poem has a format that allows us all to list the required kind of word and then place them into the skeleton form of the poem. Rachael, Liberty and I worked on it Sunday before last and here it is.

Where I’m From                        9/2012

 "I am from Ivory, Sure Gel and Pine-Sol.

I am from the white house in Happy,

                which is a home just big enough for us all,

                and the garden where we labor in love.

I am from the Rosemary that Momma love

 and the Willow that grows just for me.

I am from hard work and determination,

                from Farley and Augello and Bumpus.

I am from eating stubbornness as part of every meal

                and raising beautiful, headstrong women.

From knowing I was raised to be KING, since queens and princesses really don’t get to rule,

                “put that bird down!”

and “make sure you listen to your sister”.

I am from the many hours spent serving in the church

and worshipping in the great outdoors.

I am from the High Plains, where we can our own jelly

                and make our pasta sauce from scratch.

From the blending and adopting

                overcoming heartaches and too many hospital stays. 

I am from the jewelry box where Momma keeps what she won’t wear

                -saving it all for my sister and me."

We will end my birthday evening with this thought...... every day we have to make a difference.  Every day we have to keep getting back up.

Love and light and new beginnings- even those forced on us through technological glitches...
ileana