Gum on my shoe

The last few weeks have been busy, draining, and yet good. Coming back from Spring Break at full speed is a race to the finish.  Libby, Rachael and I have our schedules and we are rocking and rolling through the days. This time of year We generally hit our stride.  

This week I felt an unexpected guest joining me- sadness. Parenting a Special Needs Adult is beautiful  and hard. I had a blessing filled opportunity to share the timeline and progression of Liberty’s illness on Monday.  It was a bright light reminder of how far we’ve come and how much we’ve lost. Then we had our bi-annual visit with her disability insurance nurse. I was able to say several things out loud that I had only whispered in my prayers regarding the progression of Liberty’s illnesses. On Friday, Good Friday, Liberty got a new feeding tube. 

Liberty is resilient and her emotions are generally ambiguous unless she is very happy or very sad.  It may take several minutes for her feelings to reach her face or body.  She was only physically a part of the feeding tube replacement. The other appointments I was her representative- her voice. I only tell you that because I think I absorb the emotions she isn’t able to process or express. 

I don’t have a place any of these emotions: mine or hers.  So it was Wednesday before I realized that my emotional feet felt like they were stuck to the floor. Like I had to walked  through gum on a hot day. 

Sadness tends to sneak in and take place without invitation. It is sticky and gross.  The more you mess with it, the stickier it gets.  When it’s hot that gum is icky and when it’s cold it is a rock bruising you with every step.  To me, that is sadness.

Please take this entry as my own observation and growth.   I am not whining as I know I am blessed. Beyond blessed. 

It was during my Small Group meeting with church friends on Wednesday that I actually saw the metaphorical gum on my shoe.  Sadness had attached itself to me and I hadn’t dealt with it.   I’m not good at this.  Not good to say, “I’m sad.” And then say, “this is why”.  I don’t do that, but I need to.  I think my constant drive to be positive is suffocating  my natural response to recognize when I’m sad and work through it.  Then clean that damn gum off of my shoe and move forward.  https://images.app.goo.gl/2H2g4uvG4reJcZLVA

sticky shoe

So here it is: I have a sadness that I will not allow to extinguish my joy.   I have lost the Liberty we started with.  I miss her. I miss hearing her voice singing. And climbing. And being adventurous Liberty. Parts of her are still in there, but many of her attributes have been destroyed by her encephalitis. The care for her now is relentless and for that I am grateful. I love this Liberty and will continue to do all for her.   She gives me joy everyday and that is not diminished when I say I’m sad because sometimes we get gum stuck on our shoes.  

Also need to acknowledge the difference between sadness and depression.   Here is a link to help explain: Medical News.

I know there is a wealth of support around me. 

I know I’m not alone. We are all walking through minefields of gum.  

I know my God will help me get that gum off of my shoe. 

I know my meditation and yoga practice is helping, since I cannot out run the sadness. 

I know that even on the darkest of days, Easter is always coming. 

I just have to acknowledge it’s there so I don’t track into too many other places.  

-**Grateful to be able to work through it and let that sadness move on through.  All is well on this blessed Easter Day.   

Be blessed and be well,

You are loved. 

Liberty is 24

       A reboot of a mostly complete history of Liberty’s medical conditions.   What’s been left out is the laughing and joy with splashes of gnashing and wailing along with misplaced guilt and hope. 

        2007-Liberty was normal and healthy through the age of nine. At this age, she had three seizures starting that summer and ending within that year.  The first one was the night after we arrived home from a family camping trip to Southern Utah.  

        2007-2009 lots of tests in Amarillo, and then Lubbock, to verify and find the cause of these seizures.   They simply went away as many undiagnosed seizure disorders do in preadolescents. 

         Life rolled on ebbing and flowing through her upper elementary years.

        2011- In the spring we noticed Libby’s handwriting getting harder and harder to read.  We also noticed that her speech was changing.   We assumed that she was lacking confidence as her world was changing; the loss of her grandfather and her sister getting ready to graduate. 

          We got her into voice lessons and really started paying closer attention to our little one.  

        2011- In the fall she passed her physical fitness test and her yearly physical.   She started her menstrual cycle. Life started our great.  

          She starting stumbling and falling.    Was sneaking the bendy straws and spoons with her lunch.  Her handwriting was mostly illegible, and her grades were low.  Her locker and backpack were a complete mess.   We requested testing for learning disabilities thinking that those seizures could have messed up her wiring.   Or something else.   

           October 2, the diagnostician called on my way home. She had completed the testing and told me that she believed there was something medically wrong.  We were encouraged to take Libby to a doctor.    We did just that.  

             Libby collapsed walking home from school.   Neighbors witnessed the fall; her legs quit working.  Fastest drive from Caprock to Happy ever.  

             We went from a family doctor to NWTH, to Lubbock Children’s for lots of testing and no answers.   The Lubbock doctor said he didn’t know what was happening, but it was severe.  Libby’s motor skills were degenerating as if she had a traumatic brain injury.  We were referred to Cook Children’s in Ft. Worth.  

              Libby was no longer feeding or bathing herself.  We were helping her dress.  She couldn’t be left sitting alone.  

             November- first visit and the first round of doctors scheduled a few basic tests and scheduled us to return in a week.   We did.  We drove home and decorated our house for Christmas.    I didn’t want to return home and not have that tradition glowingly greeting us.   

               Libby was checked into the hospital and there we stayed for ten days.  A few things they tested for were: MS, ALS, HIV, cancers, Huntington’s, Wilson’s, Cerebral Palsy, and Muscular Dystrophy.  Tests done included lots of blood work, scans, lumbar punctures, and a liver biopsy.  

             Libby continued to lose more and more of her faculties.   We were released with no answers about what was happening, but lots of info about what she didn’t have.  The doctor told us to get her baptized and prepare our family as they didn’t know what was happening.  

            We drove home on Thanksgiving Day and shared chicken nuggets from Allsups.  

         We tried to keep her happy, but she is a little wolf girl in captivity.   She does not flourish in the hospitals. 

             One test was completed in Amarillo on order from our new doctor: eye scans. It was the eye doctor who also tested for Cat Scratch Fever, Rocky Mountain Spotted Fever, and Lyme.   The Lyme came back positive. That is and remains the only positive test result we have ever received.   There was never a bulls-eye rash, nor any flu symptoms. 

 

           2021- January finds us celebrating our little one. She now has the neurological and muscular diagnoses of secondary Parkinson’s, Bladder sphincter dyssynergia, 

dystonia, spasticity, ataxia,  speech apraxia, and currently wasting.   

 

            She has been on a five pill-a-day schedule for years; her main one is the Parkinson’s drug.    She has a baclofen pump, as of last Thanksgiving.   And Deep Brain Stimulator which we charge every other day.   

           As of Thanksgiving 2019, she has a gastric feeding tube to combat her wasting.  She can swallow some very soft foods, but chewing solid or crunchy foods, along with soupy foods doesn’t do well. Because of her spasticity and dystonia, she is burning many more calories than we can get into her by mouth, so we use the feeding tube several times a day.  Her weight had been steady for almost a year. 

            We’ve tried lots of things including physical and occupational therapy, clean eating, weighted blanket, and even blessed water.  At our doctor’s suggestion, we gave up on the Botox injections.  She was getting such high doses without any discernible relief.  Libby’s body continues to stiffen and struggle.  

          We now know that her conditions are all progressive and degenerative.  Our biggest fights are wasting and spasticity.  Her ability to say full words has dissipated.  She can sometimes say one-syllable words like “hi” or “no,” or vocalize the beginning of words.  

            Yet, our songbird continues to hum along and somewhat sing to so many songs.  Most of the time, she can squeal, laugh, and fuss.  Grateful to have some communication with her. 

           Nothing is promised.   Sometimes bad things happen for no reason.   Every day we are blessed.   This is our bonus time with her and ourselves.   One day we may know exactly when she got the bite or where, but I doubt it.  I won’t hang my hat on that kind of answer.   Instead, I will focus on how well I’ve taken care of her and how happy she is.    

             Be blessed and realize your blessings.   Love you all.