"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. 

Bargaining

I haven't posted in awhile as we've been crazy busy and blessed. Libby's dream of going to college has been challenged in several fronts. She finished the semester strong and did well in her art courses; her required basic courses didn't go so well.  Timed reading and math tests don't work for her.  Despite the best efforts of Mariah Jennings and Jennifer Collins, Libby's grades weren't what they needed to be. 

I took a protective easy out and changed Libby's degree plan to a certificate program. This way she doesn't have to take anymore reading or math courses- focussing only in her art and fun stuff. By doing this we lost financial aid and I guess that's the other side of this bargain. Libby continues in college and it will cost us some extra money.

She is taking basic theater and speech communications, along with her art classes.  Learning to navigate the computerized world of graphic design seems daunting, but I'm down for a challenge. I just hope she is. 

We had an appointment with Dr. Hottie at 11:45 and didn't get to leave until after 4:00.  Libby got her Botox, which she needed, and we made plans to do a Baclofen trial as soon as we can get it scheduled. Considering a Baclofen Pump hasn't been something I wanted to do, but if it will keep some of the fogginess out of her brain I am willing. 

I also haven't thought a stomach tube is a possibility, but to ensure her health and get nutrients into her it may be something we move towards. Not yet though.

She's been having terrible nosebleeds. Gross, heavy, unpredictable bleeds. Yuck.  Doc ordered some tests and we were at Cook Children's for longer than expected.

We did a Baclofen trial several years ago and it didn't go well. After the test, Libby couldn't walk- that was back when she could still walk. I can remember saying to our Doc after last trial that I "didn't want to risk her mobility" and he reminded me that one day I might reconsider. Yep, reconsidering. I bargained back then. 

My bargaining happens within my heart as I reach up and out to Powers bigger than me. I am brutally frank!during these discussions because my God never lies to me. 

Years ago- Please, keep Libby's legs moving, we can't carry her.  

Well, turns out we can.

Then- Please keep Liberty's bowels and urination normal. Just let that cup pass without touching her and I'll not complain about lifting her.   

Well, turns out I can handle incontinence pretty well. (High level of suckage though! What college kid wants to worry about THAT happening in class?) Geez!

Next- Please don't let Libby waste, help me keep a healthy weight on her. 

Now I get it. This is human error.

There have been many times in my life where I have found myself offering deals to my higher power.  "Please, please don't let_______ happen.  If it doesn't happen then I'll not ever complain about ________.  This is not an equal exchange, it is bargaining.  When bargaining, someone seems to come up with less than desired.

As a flawed person, I can't offer bargains. I don't think anyone can. We do this when we know something is the truth and don't want to accept it. We make offers that we mostly can't fulfill.  I don't complain outloud about lifting Liberty or about completely bizarre and erratic inability to control her pee, but I yell it in my heart. 

" I didn't sign up for this!" Or "Come on, give us a break!" And "what am I doing wrong that this is happening?" Closely following "what can I give up to stop this?"  

I believe that I can't stop or control how Liberty's disease progresses. Aside from food, pills, and potty times, I don't have control.  

I have to trust that although the road may be ugly and hard, we are loved and supported.  I don't have to worry about tomorrow, no bargains needed, as we have love and support.

 Lyme, Parkinson's, and Dystonia suck and they are hateful adversary's who are busy stealing Liberty away.  I can't bargain against evil, instead I will rejoice in hope. 

No, I am not giving up.  I will always "rage" against the progression of Libby's condition. 

Always with hope- even when it's audaciously hard. 

Six Year Diagnosi-versary

I     It was a lifetime ago when we got one of the best and yet convoluted phone calls ever.  The call that meant that Liberty had a diagnosis-finally.  We had something to fight against and a possible direction to follow. 

     After months of testing, while Libby lost the ability to walk, talk, and feed herself, and many, many specialists we had a positive.  She tested positive for a test that the eye doctor had ordered; positive for Lyme disease.  That doctor's nurse was happy to tell me that after a round of antibiotics she should "be just fine".   I called our Neurologist and told his nurse. We got an excited return call as Dr. Acosta believed that she would return to a new kind of normal if we could stop the brain atrophy from continuing.  

     We began massive amounts of research and queries into what we now know is the world of Lyme.  Because the American Medical Association doesn't believe that Chronic Lyme exists, there aren't  accessible treatments. In the eastern and south eastern parts of the U.S. Specialists exist that believe that even after Lyme has been attacking the body for years you can be "cured".   Libby has had several regular rounds of antibiotics and IV antibiotics for 30 days. Nothing changed. You can't grow back part of the brain that has died. 

**New research continues for Chronic Lyme.  

      Our reality is different.  Lyme gave us a seriously atrophied brain and a greatly compromised neurological system.  Then came the diagnosis' of Parkinson's, Dystonia, severe spasticity, ataxia and speech apraxia.   Cycles of meds, tests, medical staffing, more tests and new meds have left us with a pretty good idea of where we stand. 

      Our most recent evil gift is Detrusor Sphincter Dyssynergia; Libby's brain and her bladder/colon do not communicate on a consistent basis.  A bathroom, fluid/food schedule, and preparedness are our current method of defense.  I have to admit that this part sucks on a whole new level. 

      She's had years of speech, physical and occupational therapies that have given me a love/hate relationship with these wonderful professionals.  Mention "therapy" to Liberty and she will give you an ugly look. 

       Sometimes I wonder what our life would be like if we didn't get that initial diagnosis.  Would she still be here? What treatments and meds would we have pumped her full of trying to keep her alive and going?   Knowing your enemy is better than not. 

      

      The good news is that her brain has been stable and no new signs of atrophy since the last scans.  Not willing to lose more of her.  

     The other news is that Parkinson's and Dystonia continue to ravage her body, but we have an every three month regimen of Botox, five time a day pill schedule, and her Deep Brain Stimulators that we check/charge daily.  

In the future she may get a baclofen pump and maybe surgical relaxation of her hands.  

     Most importantly is that she is stil here. Her beautiful personality shines past everything. There are things that happen in life that truly aren't fair. Things happen that just suck and that aren't deserved. I have taken the blame for her infection and her illness in the eyes of many.  I wish I could take her illness from her, but I can't.  I would give anything to carry this for her, but I can't. I can only continue to be her voice, her muscle, and her advocate.  

      In the six years Libby graduated from high school, I completed two Master's Degrees, Rachael has almost completed her Doctorate, and after several changes in degree plans, Mariah is nearing the end of her college time.  I can't say that I have regrets for the last six years as I believe we have done our very best for Liberty medically, socially, educationally, and emitionally. There are so many things that could have happened to this child and I am always grateful to have had the chance to fight for her.  

     We continue to be blessed and know that we make choices everyday to live the best life we possibly can and to not let our circumstances determine out outcomes.  I believe in hope. 

Happy diagnosi-versary.