Graduating and Pictures

 

On May 10, found us at WTAMU to witness Jennifer Howell's graduation with her Master's in Speech Communication.  A beautiful moment to witness and a proud moment to share.  Congratulations! 

Following her ceremony, we headed to Palo Duro Canyon to have family pictures made.  I will tell you that the planning and scheduling of this little get together was like nailing jello to the walls.  (These family pictures taken in the Canyon were supposed to be partially a gift to Mariah since she asked for the whole family last year and for Adoption Day.) The photographer had a change of plans, then we had to schedule to make sure we had the kids.  

And so, finally, it all came together the day of Jennifer's graduation and day before another's day. We just had to celebrate everything at once. And it was HOT! Only a few meltdowns, but still a great time to be together.   I know that we got some amazing shots of our group.  You are all my heroes!

http://m.deseretnews.com/article/865602761/Alex-Boye-mom-bloggers-celebrate-Mothers-Day-with-Katy-Perry-Roar-cover.html?pg=all?ref=https%3A%2F%2Fm.facebook.com 

 

  Just a few sneak peak pics.  Hopefully more coming soon!  

 

  Indiana Jones hat, Blues Brothers shades and Bat girl outfit- who's styling now?  Palo Duro Canyon is my favorite place on earth, besides my home.  Libby takes on a special glow when we're there.  Sweet girl only complained once about the heat.  She is such a tough girl! 

Trying to get a lift from SuperBoy!

Here's the fam, minus Mariah who was at work.   

There were some teary moments throughout this day.  With Libby's surgery looming over me, every tangible moment is precious.  These pictures and the time in the Canyon mean the world to me. 

Thank you to everyone who was wiling to be a part of this very special day. 

Mothering in the line of fire

School is an emotional warzone.  The end of every school year is always a whirlwind of excitement, joy, and exhaustion.  This year has felt more like an endless boot camp.  As if I have been preparing my kids for an continual battle and my classroom is the frontline.  Every scantron is a weapon wielding levels of instruction and destruction. 

My classes full of juniors have tested their brains out and are still testing.  We have taken the PSAT, EOC 1 and 2 retest, semester test, benchmark every six weeks, SAT, EOC 1 and 2 retests again, TSI and now we are facing the second semester test.  These kids are my heroes.  They have given their all and more.  Some have shut down because they have not passed many of these tests.  Some have dropped out.  How do I/we keep putting these kids in front of the line of fire?  We try to prepare them, teach them, bolster their confidence, model hope and pray, yet it may not be enough. 

I am amazed by how tough these kids are and how willing so many of them have been to keep going into battle. I am grateful to have been placed in the class and grade level that I needed to be in.  I didn't know last summer that I would still be in the classroom, but I am glad that I have had this opportunity.  This group of kids had some lessons to teach me. I have learned tenacity and diligence.  I have also learned to keep looking out for what is coming and plan accordingly.   

 

Having Liberty in class has taught me a higher level of patience and a greater amount of planning than just about any student so far.  Although it has been trying, I know it will be an experience I'll always treasure.   

With lots of help and guidance, we have managed to have her take the SAT with accommodations and next will be the T.S.I..  She may not have to have these tests for her future, but I feel like it is important for both of us to have the experience.  Plus we get to see how Libby does under pressure get an idea of where she is cognitively.  I was so proud when several kids were called out of class for testing and Libby said, "do best".  It came out very clearly and it touched me to hear her cheering her peers on. 

The Class of 2015 has my heart and pray I that all their time in the war zone has not harmed them. 

  

We think that EOC scores will be in within the next few days. 

 

Then we plan our newest attack strategies and return to the frontlines.

 

Note: No administrators, counselors, teachers or others who have control are being  blamed here.  Simply sharing my observations as a mom and a teacher. 

 

 

 

Envy is evil and ugly

I wish I could say that I have never been green with envy.  I also wish I had a true, deep, humble appreciation for everything I have.  I know I have blessings that others only dream about and pray for.  I know I have way more than I deserve. (The idea of what we deserve is a whole other topic.) 

I admit that I have been more envious than ever before in the past few years.  Friends with kids my age are taking trips, alone, as a couple. They've added on to their homes, not made theirs wheelchair accessible. They are able to dress according to desire and whimsy, not planning around the weather, Libby's ability or inability to move, and avoiding any shoes her wheel chair may run over. They are going browsing at stores, taking art classes, other such other-worldly stuff.  In that far off pasture where the grass is shockingly green, they do stuff that I can't do. They are people I can't be.  They live like I never have. 

Envy is ugly and it doesn't look good on anyone.  Other people don't have Libby and aren't continually blessed by Mariah's ability to overcome and be. Other people haven't learned many lifetime's worth of lessons with such a beautifully spirited teacher.  I can't, we can't waste our energy wishing for and wanting what other people have.  Comparisons deny the gifts and blessings you have. 

Thursday, July 24 will be two weeks since Libby received her first programming session.   There are many slight changes, little things that we are seeing that aren't predictable. Of course, this kid's never been predictable.  I know that I am grateful that she made it through the brain stimulator implants almost a month ago.

 I am grateful that the laundry list of possible side effects stepped by us.  Libby was able to "swim" during our stay for my training.  Hoping the DBS will ease her fear of falling and more of the Dystonic symptoms.  

She has been healing at such an amazing rate.   I can't allow for envy to creep in when I have these smiles.  One of our few moments of heading to the pool.  Joy at there being a lift making it much more accessible.

Other people may be able to do so many other things that we cannot, but we are able to find moments to rejoice that are unexpected.  Our life isn't less, it's just different.   

Love people, and don't wear envy.  Remember that your life is differently blessed.  

Monitors: the good, the bad, and the icky

Baby monitors are a mixture of good and evil.  Good is that I can hear when Libby is really upset.

Bad is that she knows we come running- even if it is because her arm is cold, or she misses the cat that died 13 years ago, or I wasn't home earlier and she just missed me so something hurts.   The trick with our kid seems to be figuring out what she really needs versus what she's summoning us for.

This is true with all of us.  We use various systems to monitor each other and to reach out.  Phones, emails, Facebook, blogs, Instagram, Twitter and the antiquated letter. Whether we realize it or not, it is human instinct to reach out when something is amiss, even if we don't know what that dis-ordered ick is.  So many of us are walking around and if we had a baby monitor attached we'd be beeping like crazy.  

Some eat. Some shop. Some give every minute to others to avoid their ick. Some work out. I create. 

School let out last Friday. Beep. On Friday I learned of my new teaching position. Beep. I began teaching Summer school Monday.   Beep. Many people are joining us in Ft. Worth to support us for the surgery. Beep. Money. Beep. 

I have been in a manic phase for the last month of school because I knew that I had to get my world in order before Libby's DBS implantation surgery. There is little in the house or classroom that I haven't organized, cleaned out, and/or painted.   

Rachael, ever patient with me, asked yesterday if I was about done.  Yes.   Almost.  I don't share the list in my mind since no one needs to know that I'm on contingency plan q for after Libby's surgery. Beep. Beep.

Want to know what my state of the union is? Ask how much I've been painting. Writing. It's like nesting only a middle aged version of it.  

So monitors are good and bad.   I need to learn to pay attention to mine.  We all need to know our "beeps" and learn our ick coping strategies.   

Share your beeps. Reach out. Reach in. Don't self destruct, that's easier than dealing most times.  

(I am at peace with the DBS, it is not knowing what level we'll be leaving the hospital with that causes planning ahead.) 

Blessings.  

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