Grabbing the Bull by the Horns

     Tomorrow is a big day for all of us.  Our public schools and Amarillo College both begin the Fall semester.   Mariah is ready to knock out the final steps in one leg of her journey.    Arranging her class schedule around what Libby might need is just one of the gracious sacrifices she has made.  Without Mariah's help we couldn't have gone and learned as much as we did this summer.   She's been a one woman force and I remain grateful for the time with her and all her help.  Having a grown child willing to be with you and offer help (insist on helping) is a special kind of gift.  

     Libby is registered for two glasses within her art certificate program and wait listed for another.   Our goal remains to keep her happily going and out of the house for as long as possible. 

      Rachael is taking over as head of her English department.  I couldn't be more excited for her and for her campus.   Knowing the big shoes she's filling has made the transition daunting, yet there is nothing Ms. Rachael Collins can't handle.  

 

      The spasticity in Libby's legs continue to cause her to have legs that stiffen and hurt if they have to bend.   It is a part of the Parkinson's and Dystonia.   She has been complaining more and more and all we can do is hope one of her pills will help it.  Mild stretching and massaging also helps, but she's not big on either most of the time.  We have an official, and insurance approved, date for her Baclofen pump installation.   We had to finagle quite a bit, but we have the date.  Botox in October and Baclofen surgery in November.    (I'll announce the date once I've talked with my bosses.)  

     We originally had this surgery scheduled for July 5, but insurance cancelled.   http://libertyslymefighters.blogspot.com/2016/06/we-are-on-go-morning-has-been-beautiful.html

 

 For more information on this implant http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Intrathecal_Baclofen_Therapy_for_MS 

     For this semester I have a set of goals that are so important to me that I am afraid of voicing them.  Excitement for the incoming seniors and my continued focus  on allowing choice in their reading and quadrupling the amount they write have driven me throughout the summer.  I am always willing to be reassigned, but I was delighted that I would remain working with seniors.  Truly, everyday I get to teach is a good day.   Truly. 

Indeed, we are blessed! As we move forward we will not shirk away from our challenges- we will grab hold and conquer.  This only works when we are united in our endeavors.  

Thank you all

for your kindness.  Be blessed. 

Ribbons

      Once you notice them, you'll see them all over.   They glitter and shine in the sun, flapping their time worn ends in the breeze.  Some phone poles boasting layers of school colors denoting who was playing against whom and then which teams were going to playoffs.  These ribbons hang on long after the pre-season workouts, pre-game planning, game playing, crowd cheering, and parents booing have gone. Showing us the recent history of our school lives in a long embedded color code of belief.   These colors, whatever they are for your school, are a banner of unity.   They are reminders of hope. 

      There is enough negativity in the world right now and I think we all need some spirit ribbons to remind us we are all one.    Because my beautiful people, we are all one.    Regardless of who you pray to, live your life with, vote for, and whether or not you Pokemon Go- we are all one people.  

       On our walks and jogs around Happy, I've been hanging up random ribbons on poles, posts, and fences.   With each ribbon I pray for safety and joy for those who pass that way. That's it; that simple.     

         Please join me and let's remind ourselves of hope. Hang a ribbon up randomly and add a little prayer to whatever God answers you.   

I've got yards of ribbon if you'd like some.   

"Plearn"

We are on the GO!  This morning has been a beautiful chance to begin to process all that I have learned. At the ISTE Conference, in Denver, this week I had the opportunity to be exposed to the most current technologies available in education.  I went to sessions, talked to educators from around the world, and soaked in so much.  One of my favorite presenters shared a new to me term: plearn- play, learn, plan.   That's a great summary of much of what I've learned in our first month of travels.  

Traveling with Liberty means I have to adapt- a lot.   Adapt how I think, do things, react, plan, and believe.   Adapt the surroundings, when possible.  Adapt the situation, when possible. Adapt expectations, which is generally the hardest. If I don't adapt I have a "stink face" that I end up wearing for awhile. 

 

We were able to go to a Colorado Rockies baseball game Tuesday evening.  We caught a city bus and then walked the rest of the way to the venue.  All is great- right?  I love to walk and we have Libby's KAM. We had Mariah and even Grandma Linda, Jasmin, and Xavier with us.  All is great!  

Well, it rained for over an hour. It hailed.  It poured.  

 

And then it poured some more...

 

The 6:40 start time was delayed until 9:20.  I didn't adapt.   I kind of panicked.   Everyone wanted to at least see some of the game.   I wanted to as well, but I also didn't know how we would get everyone back to the hotel-safely- if we stayed.  keep in mind I've got a Liberty in an adult stroller, downtown Denver, and it's night. 

I checked the bus schedule and it showed the busses stopped at 10:00. Eek!  Called three cab companies, none of which had wheel chair accessible vans or SUV's. Double Eek.  It was hard for me to think at all because there was no plan and it was only getting darker by the moment Communication with my people broke down.  Finally, I just gave up.   I felt beaten in some ways, but determined to keep my little group safe.  (Sorry for the stink face.)

Just when I think I have overcome my worries something new, like this evening, happens. 

In the end, I learned that I have to continually remind myself that I have to adapt.  I spend so much time planning to overcome the many obstacles to ensure that Libby gets what she needs, that I can't let myself forget to adapt.  

Plearn.   

We have left Denver and are going to enjoy a day, or two, of mini vacation in South Fork, Colorado.   We are trying out a cabin to see if we can keep Libby happy, safe, healthy, and comfortable.   If we can, then we will be planning some longer stays in the future.   

Liberty has the Baclofen Pump insertion surgery on July 6. More on that soon.

Fear

Please don't believe that I have any idea of the complete horror experienced in Orlando.  I have felt too much anger and fear today.  I am afraid for my beautiful friends who organize and celebrate Pride every year. At the end of the day, can anyone be murdered because of who they love, the color of their skin, their sex, their religion, their citizenship status, or their nationality?  Will anyone care how hard I try to be selfless, loving and supportive?  Doesn't seem like it will matter.

 Many years ago we had a couple of back to back "lock and secure" drills.  We hoped they were drills. This was before the seeming tidal movement of school shootings.  I knew to be afraid, but not how real it could be. 

After one lock down that lasted several hours, found out later it was a prank, I had to have a difficult conversation with my family.  My response was that as long as I am doing what I'm supposed to I will be okay: alive or not.  Come what may, I know I am supposed to be a teacher.  

In my life I have known violence.  I have had a knife pointed at me a time or two, been on the receiving end of abuse, and some other dark events.  I have had a dear friend beaten because of who he loved. No one needs to know this except for me to get the to my point of saying that I know, in a small way, what it is to be afraid and to find yourself, or someone you love, a victim.

murder in the city

https://youtu.be/m9tuVSkIDZ4

I've learned many things, but the discussion with loved ones always comes back to a core belief: if I am doing what I'm supposed to then whatever happens is out of my hands.   "If I get shot in the city" then know that I loved deeply and did my God called me to do with my life.  I cannot live in a state of fearfulness; I am not weak. I believe there is always hope As long as there is hope, there is strength.  

 

Hate crimes, an ever growing culture where I am sad to say many blame the victims, and other killings by those we are mentally ill  could lead me to a place of fear.  Instead I will be a voice and be strong for those who cannot.   

Make  no doubt that I am aware of my surroundings and am not a true passifist.   I will protect what is mine, and have, if I need to.  I just live in a world full of love, hope and forgiveness.   Wish all could join me.  

Tomorrow

No rest for the weary of the wicked- I may be both! We head to our first doctor's appointment tomorrow.  I was able to triple stack this time: pre-scheduled every three month Botox, Deep Brain Stimulator check up, and Baclofen trial. 

 

Our appointment is for June 2. 

Libby has had more pain and been whiney and miserable in the past month or more.  Her nerve endings are pretty messed up so she may complain that her ankle hurts when it's really her knee.  Keeping her on pain meds isn't successful as she becomes very moody, growly, and well not nice.  We've tried several different kinds of pain killers and they cloud her brain in a way that isn't okay.  The Libby we all know leaves the building.   I don't want her in pain or uncomfortable, and I want her eyes to sparkle with her Liberty-ness.  (Yea, I know none of this is about what I want.)

Botox helps, but there isn't enough alotted every three months to relax her upper body and her lower body.  The Deep Brain stimulators do help as I've seen how completely rigid and locked she could be. Can't unsee what that was like. 

We are doing a Baclofen trial to see if she can handle the muscle relaxer, Baclofen, being pumped into her spinal fluid.   We tried several years ago and I freaked afterward because Libby couldn't walk or move her legs.  That was when she was still walking.   We don't walk anymore. 

This appointment is the first step to getting a Baclofen pump inserted into her abdomen and a catheter carrying the muscle relaxer to her spine.  This would allow her lower body to be pharmaceutically relaxed without having the high doses of the drug running through her blood stream and fogging her brain.  With the Bac Pump we will be able to use all of the Botox in her upper body and that will be better all the way around.   I also have some hope that the Pump might help with the ever increasing potty issues.  

 

 

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=42865

So, off we go.  We haven't gotten final approval of her new wheel chair or the lift for the van yet. Hoping that'll happen this summer as well.  But, we all know, my hopes don't matter I the grand scheme.  They are just that; the silly hopes of one mom. 

Fill the Bucket

https://www.facebook.com/jennings3/videos/10204690090199860/

*I hope the video link works. It is worth reliving.

For me, it's not about the bucket list, it's about filling the bucket. 

Just over a year ago Liberty walked across the stage and got her high school diploma.   For a child that started out healthy, outgoing, vivacious, unpredictable, smart, independent, stubborn, and loving, her graduation was a given.  For the child who lost full neurological function due to the Lyme disease that went undiagnosed, her graduation was a miracle.  

Chronic encephalitis, dystonia,  Parkinson's, spasticity, detrusor-external sphincter dysnergia and speech apraxia are her current diagnoses. She has rechargeable Deep Brain Stimulator's, meds on a five time a day schedule, braces, lots of equipment, and we are hoping to get a Baclofen pump by the end of the summer.  Since her diagnosis January, 2010, her body and prognosis has changed.  Her main doc, Dr. Hottie, doesn't discuss any prognosis as Liberty has been in uncharted waters for a long time, plus it's too hard to discuss.

 I have been afraid of anything happening that I could have stopped.  Afraid of Libby getting hurt.  Afraid of doing anything extra that could hurt my body and keep me from taking care of Libby.  I have been careful of our adventures. We've had lots of fun and lots of adventures, yet I've been beyond cautious.   

I've bought Libby lots of stuff that I thought would make her happy.   Buying stuff was not something I did  before she was struck with illness. Many beloved others have bought her stuff.   We've pushed to move towards experiences, but not full force. Something changed in me early this Spring. 

I'm done with stuff.   I want to go and do.   I want to fill Liberty's bucket with stuff we've done. Fill it with adventures that left our hearts racing and our tears flowing. I don't know what time we have left and what any tomorrow holds,  so I am going to push that we go and do. While we can, we will. 

 

While I can; I will.  While we can; we will. For the child who is smart, funny, flirty, adventurous, and has a list of medical issues, everyday is an empty bucket and I say lets go!  I have to continue to let go  and get going.   I have to trust and relish the adventure.  I have to- to remember her.

Raft or Cement Block

Here at the end of the school year the look of fatigue is everywhere. It  feels like we're dragging ourselves across the finish line; carrying our wounded and schlepping bags of  old lunch containers, school shoes,  and books-lots of books. We teachers and staff finish with dogged determination, exhilaration and a lingering sense of what wasn't done, or what wasn't done well.   Because of the structure of  our school system, teachers are given some time to reflect and we call it Summer.  

For myself I have been batting an idea around about what things keep me afloat.   Here are some of the questions I'm asking myself. 

What things buoy me- a raft separating and salvaging me from dangerous depths? 

What things drag me down- a cement block tied to me in deep water?   

What words, actions, relationships, hopes, reactions, practices lift me in a way that allows me to be the best me I can?  

What words, actions, relationships, hopes, reactions, practices pull me down and prevent me from being the person I can be?  

Am I surrounding myself with rafts? Or anchors?  

Am I a raft or a cement block  to others? 

Which are you- to others? 

I cannot spend my reflective time comparing myself to others.  I have to reflect on what I have done, am doing, and will do.    I also will rejoice in the victories and forgive myself and learn from the defeats.  

Be blessed.   Much more coming.