Funds and feelings

The Happy Girl Scouts held an amazing fundraiser for us last weekend. There was a silent auction which included two Kenneth Wyatt paintings, Glen Dougherty brought in an antique toy tractor, and many other amazing donations.  There was a baked potato bar and donations were accepted. The money will go into a separate account to help us with the lengthy stay we are facing around Libby's surgery. We are humbled and grateful beyond belief. Many thanks to all who helped prepare this event and to those who donated.

We report June 26th for paperwork, brain implants go in on the 27th. Libby should be released on the 28th. We are to return on July 1st and the battery packs go in on July 2nd. She should be re-released in July 3rd.  I will not be driving her almost 300 miles home in between the hospital stays. We will be in a hotel room resting and healing.   I am just not okay with being so far away from her docs between surgeries.  I want to be within a mile or two of the hospital. 

Libby has agreed to this surgery with the condition that her sister and her cousins be there.  We will do everything we can to make sure that Mariah, Jasmin and Xavier are all there.  (The rest of us are chump change apparently.)   

I cannot stay in the Ronald McDonald house for many reasons. First and foremost I just can't.  I become so overwhelmed by the pain and fears for their children that I forget to care for my own.  Early into this journey, during hospital stays I would not be able to eat or deal with my own fears for my own child because so many others are so much worse off than our Libby. 

I need to be able to focus on her and our loved ones.  This trip especially, I'm going to need to cry, eat, sleep, pray, cry, and even drink privately.  The dam that has held my emotions at bat for so long cracked a few weeks ago.  After sobbing uncontrollably at school while on the phone scheduling this surgery, I have cried quite a bit.   Okay, a lot. 

I wish that my mother and Grandmother could be there, but I am not sure how that could happen. Grandmother is 97 and though amazing she is frail and doesn't travel. My mother isn't mentally or physically stable enough.   

When Libby is in the hospital Rachael and I sleep in her room. When she is out we generally stay in the motel that is as close as we can get to the hospital and is affordable.  One day we may need to take advantage of the amazing Ronald McDonald houses, but not yet.  

We have not asked for any monetary help but are very grateful for every one's support. Whatever form that support comes in. 

Planting is some m&m's to see what the Easter bunny will

Bring.... Happy Hopping and feel

As blessed as you are. 

Prom pomp and Circumstances

Grandma was there for final alterations and to give advice on everything. We did meet Mariah and eat a nice meal before prom. Quite the blessing. 

Miss Beth Garza and Liberty- aka Betherty.

Not that either of us cried while holding her up and dancing.... 

Liberty and part of her class. 

On our way to prom and I admit to being a bit excited.  Getting Libby dressed  was interesting. The dress alterations and booby coverage were complete.  Libby even has on makeup.  Have to say she is a beautiful child- young lady. 

Irony is that the theme was "Once Upon a Time". 

Chair dancing!  She wasn't happy unless she was being helped and held up!

Two of our beautiful peeps who wanted to dance with Libby.  "Shorty get low, low, low..."

Notice Rachael getting a real workout holding the dancing queen up! 

I asked our Floral Design teacher to make a corsage and boutonnière for Libby and Rachael. Here, we are slow dancing. I am crying.

Prom and our circumstance. Very different from our dreams.  But grateful to have her here. 

Our lives are upside down and backwards, but we are blessed. 

http://youtu.be/xwsYvBYZcx4

The final picture is of Libby and I dancing to this song.    That's us.  "You're crazy and I'm out of my mind..."   

Thank you Rachael for holding us up. 

Thank you God for the chance to dance with this child at her prom. 

Genetic testing

Dr. Hottie and Mr. Surgeon want Libby to have a very unusual genetic test done, before the DBS, Deep Brain Stimulator surgery. This test would only give them, the medical folks, and us, more information.  The trick is that they would like for both biological parents to also be tested. Have searched and reached out for the other bio and no response. 

This test is the Whole Exome Testing.  The WES gives an exome by exome mapping of participants.   By testing Libby we will learn something that may give some answers and maybe even treatment options. 

The info came in the mail today and I was not ready.  We got Libby bathed and had dinner. I opened the package and was not prepared.     Some things you know are coming and you put them in a box for later.   Then, like a jack in the box, they spring up sooner than expected. 

Sorry it is sideways. This is the note attached to both of our permission slips. 

If you had a chance to have genes really checked  out would you?  

What if my WES says that I've passed this on?   (Then I couldn't control it.)

What if it says I didn't? (Then what if it is the other genes in her system?  Or, what if it is Lyme and there is no genetic marker?   

 

What if nothing is found in Libby and something is found in me and not Libby? 

The "what if" list is long and arduous.  It boils down to possibly "my fault" and "not my fault" or to "under my control" and "not under my control". 

When I asked Rachael to pace and talk to me that was normal. Sitting down in the middle of the little intersection to look at our property and talk and think was different.  A sweet neighbor asked, "do you need a bottle of water?" Which tells me I may act a bit more differently on a regular basis than I think.  "No, I need to think....and the perspective here is great." 

Would you? Is information always valuable?  Information does not have emotions; it is data, without feelings.  We bring our own junk to the table when we talk about information.  I believe in truth and have faith.  Now, gonna put this back into a box until we get past prom which is this Saturday.  

Libby is going to Prom- junior year.....

And a box with "incidental findings".... Prom and her glitter bra and dress are more important right now.  Yea, glitter bra.... Ugh