Run Fast Little One

 I have always cherished the beauty of the Easter season.  As a child Easter meant going to the garage sales with my Godmother to get a frilly dress, girdle, and “clicky” shoes.  Not to mention getting my hair pressed to set the curls in the right places.  I can still smell the rolls rising, deviled eggs, as the Ham baked for our after-church Easter Meal. 

In church, Easter meant bright colors came out of their hiding to usher us into a new season.  The hope of resurrection filled the world with a cacophony of risen life in both flora and fauna.  Easter is the time of resilience and re-beginnings. 

"There is Jesus"

Yet, before we get to that time of celebration there are the deep, dry, and cold parts of winter.  I am not comfortable in the dark, and this year Dark invited strange high winds that seem to stay on the Panhandle stage for encore after encore.  The trifecta of cold, dark, and windy means there aren’t many chances of running or biking outside, but I still didn’t welcome the winter blues this year as I have in the past yearning to be outside.  I am better when I can be outside. "When It Don't Come Easy" I don't think I am the only one struggling to not pick up the pent-up yuck of winter.

This year, I am coveting the starkness of Lent, and the simplicity of giving away what weighs us down.  As much as I relish the chance to love an unadorned church, I revel in the beauty rolling into the fully dressed church on a tide of colors. As simple as the church is when She is in Lent, She is just as surprisingly complex during Easter Tide. That contrast is part of my own emotional, physical, and spiritual rotation.  

 The more I am coming out of my Grief fog, the more I am realizing what is better for my whole self. That means I am finding time to be outside or get into the pool for laps- even if it is in short adventures. 

Easter and all of the beauty that comes along with Spring feels like I’ve been charged with glorious enlivened growth.  We’ve even had several little teasing spots of rain and even the dirt is wearing a “Spring come here to me” smell. Last week, 3/22, I had a doctor's checkup and afterward, I gleefully took myself to Palo Duro Canyon.  I had three hours before I had to return to school; I took a half day.  What beauty did I find?  No longer is the Canyon wearing the almost simple pallet of winter yellows and grays.   She is wearing lots of copper red and infantile greens as she gears up for the seasonal change.    

I saw all these beautiful friends and sang my way down the trail.  Then I saw the most amazing gift: I stopped to look at the stream and saw an adolescent Coyote across the stream.  I didn’t get a picture because she was looking right at me and I began to cry…  She stood completely still and then nodded her head as she sniffed in my direction. She was shedding her winter fur, as am I. Then I realized that her muzzle had red specks in her fur. 

 Libby was always the Wolf, the Coyote, the Fox: all the Canid.  I just kept singing “Hi Libby- Hi Libby- Hi Libby.”  I uh may have tried to follow that coyote for quite a while, and I could not keep up.  I couldn’t keep up with her.  

I choose to believe that Liberty needed to see me as much as I needed to feel her presence. I choose to believe that Liberty was letting me know that she is eating after so long struggling to eat.  I choose to believe that she is growing in her new realm by running fast as did so long ago.  I cannot say that I don’t miss her physical presence every day, but I am grateful that she is free of physical problems.  She has shed her body, just as the coyote is shedding blood-stained fur.  Every Easter we can clean out the negative and water the positive; we too can shed what doesn’t serve us.  

"Hold My Hand"

As everything is dynamically changing, and growing in this Eastertide I pray that we can be refreshed in this season.  I know that I am surrounded by love and support and for that I am grateful.  Please continue to say her name and keep her in our hearts.  Pray for her other family members and of course, for her amazing sister and Derrick.  We are all running in our own ways.  We are all learning and growing in our own ways.  As stark as parts of winter have been, Spring can be a fantastic race of growing and shifting into a better and stronger version of ourselves.  Run fast little one- I will always be cheering you on.

 

Staying Afloat

       Today was a long day: one handsome  Neurologist, 20 injections, a Neurosurgeon, and a group of nurses I really care about made Liberty's double appointments enjoyable.  It was the whole facing the status of Liberty's conditions that tend to drag a Mom down.   

        Today I agreed to something that I once thought I would never want.   Agreeing to have a Pump put into my baby's abdomen was not on my acceptable list.  It's only been seven years ago this week, October, 2009, since Libby's body quit working and we were stumping the doctors at a hospital in Lubbock- a lifetime ago. Since then our reality has changed drastically and so, we adapt to try to keep up, and maybe someday, get ahead of the torrent that is Liberty's health.  

 

    Today, I finalized the schedule to have a pump placed inside Liberty will have a catheter running from the pump to her upper spine. The Pump will allow her to stop taking her muscle relaxer five times a day.  Part of her Brian fog could be gone.  This will, hopefully, reduce her spasticity and give her some relief.  Imagine the stiffness and pain caused by a very long muscles cramp in your leg.   Now imagine that tightness without the pin and needle sign of relaxation.   Yep, that's spasticity as it was explained to me. To me, understanding her pain feels like drowning.  

     Liberty hasn't had her Botox injections since the first week of June.  Her spasticity relentlessly increases; a lake after hard rains. She has dropped more weight; a side effect of her spasticity. Now, we will climb back on our raft of stubbornness and hold on until our date arrives.   

       We also drove to Dallas to visit my Mom in the hospital.  Her falls have made her upper arm break worse.  The move has been hard for all of us. Praying for all of us to adapt and find happiness in this new adventure.   

       Today, I choose to not let the assumed prognosis and the deluge of symptoms we aren't getting ahead of stop me from participating in this day.   And tomorrow.   And the next.   I will make sure that Libby keeps going and living life.   Period.  Now, I need to sleep.  Tomorrow, we have new waves to ride.   

Goals and Gifts

After the shock of Libby's 18th birthday and the amount of work to be done in order to get her into college, I asked Libby what her goal was for the rest of the year.  (This is after the challenges of SSDI, modifications, and accessibility hit me like a circus train full of elephants.) She responded that she wanted to dance at her prom and walk the stage at graduation.  So, we have been pushing her more and more to strengthen her legs and trunk. The ability to walk more and correct her body positions more has been enhanced since the DBS increase and the Botox at the start of March.  

We pushed her goal over Spring Break and starting this week I left her wheel chair at school and walked her to the car.  The next morning she walked to her class.  And repeat.   Tonight she walked, always with assistance, into Walmart. We have to push her because she still gets no therapy outside of school; I hope that this will change over the summer.  It's a challenge for my body as well as hers, but her goals match mine for her and I know it will be worth it. Moving her and stretching her more it is.   I'll add some Tylenol.  

An amazing young man, Jake, has asked Libby to go to prom.   He is smart, sweet and truly one of the kindest people I've met. 

His mom, Eliza, has been an ASL

Interpreter in my classes for many years. She, and her family, have known Libby since before the Lyme disease changed our lives.  

She thinks he's very handsome and squeals every time he is mentioned.  She is beyond excited to go to prom, show off her dress, dance, and have a date.  

 

**Disclaimer-- I have loved this school for over 13 years.  Since I first stepped foot on the campus.  We have made choices and sacrifices so that I can work at this school 35 miles away from the home I also love.**

Unknown to me a group of seniors started an Instagram and Twitter campaign to nominate and elect Libby as Prom Queen   Uhmmmmmm, what?  Totally unexpected and something I would never even say outloud that would be thought of, much less dreamt of.   Today was the voting, ironically through English classes, and I was humbled throughout the day. 

Since I heard about this whole Queen thing I've been afraid. I didn't want my precious pearl to become a joke or to be used period.   So afraid and protective that I haven't even told her that she has been nominated.  Talking to my students I have been even more humbled and amazed by them than ever.   I was told about how Libby always shares her smile, sings, and laughs with her peers.   They have lived through the last four years watching her walk into Caprock as a Freshmen and then become almost chair bound.  They have lived through her tests, scary surgeries, and the painfilled progression of this terrible disease. Libby is theirs and she claims them.  When a kid waves at her she always tells me "my friend" and then fills me in on what class she has with them.   I have learned to love all of these kids through her eyes and heard from Libby when a student was upset and failing, or excited and thriving.   

Because of these amazing students, Libby has been able to try many things knowing that she had their support.  Even when her body shuts down and her speech leaves her, she still has other kids who don't give up. Because of these scholars and future leaders she has been given an amazing gift- acceptance of her regardless of her abilities or disabilities.   Whether she is elected or not, Libby will be filled with joy simply hearing her name called out at her senior prom.  

This day, this chance that before her body was attacked wasn't guaranteed and I would have taken her prom for granted.  I am so full of awe and gratitude that I cannot even process what these kids have chosen to do.   

This school is a high poverty school with a high percentage of students of color and these are the ones who have chosen to allow two who would be generally overlooked to shine.   One of the boys nominated also has some challenges and is well known as one of the kindest and funniest people on campus.   They have chosen to give these kids a chance.  Admiration and appreciation don't cover it. Already such an amazing gift.  I love my children, biological and claimed.  They are all mine and Lord knows they have my heart.  

Meanwhile, there are several weeks of high stakes tests and lesson plans and life until the prom.   Lots of planning to be done!   Never underestimate the kindness of people. Simply amazed. What a gift it is to do what I love with such amazing students.