Here Am I. Send me.

Rough Road

Happy Tuesday,

We now live on a world where Liberty can accidentally bite herself hard enough to break skin and cause her entire hand to swell.  This is not the road I would have ever chosen, but it’s the one we’re on.  

The last 24 hours have been rough.  Liberty has bitten her finger so severely that I had to get her checked for a break.  

Yesterday afternoon I got a call while I was in class that Libby was okay, but had gone through a Spastic fit and bitten her finger hard enough to break the skin. Poor Derrick and Mariah for dealing with this scary drama.  (She has bitten herself before as her left hand, index finger, stay very close to her mouth. She has not broken the skin so much, not caused her entire hand and wrist to swell due to the bite trauma.) She has also bitten plastic spoons, straws, and forks in half.  We don’t use plastics any more.)

She had an ugly shower and potty last night and cried through most of the night.  I wrapped and iced her hand.  She spazzed and bit her finger again around 11:00.  I slept with her using my arms as a defensive shield lest she bit herself again.  

Took her to our clinic doctor in Canyon early this morning. Getting X-rays are difficult.  Went through two sets of attempts before we could get a decent shot.  With the spasticity and the gnarly nature of her fingers, it’s hard to see a possible break. Getting her body into the needed position was a challenging yoga class into itself.  It’s easier for us to move and conform that it is to try to get Libby’s body to do so. The Radiologist doesn’t believe she has any breaks.  Thank goodness. 

We left the clinic to get the script for antibiotics as bites of all types are dangerous magnets for infection.  Love our little Canyon clinic.  We did come home with a finger brace which she managed to get off of her finger before we made it home.   

I did ask the Nurse Practitioner for a Liberty size “cone of shame”.  Apparently that’s not appropriate, but it was funny. 

So, here we are.  We lost the day as I couldn’t leave her to go to school this afternoon.  Didn’t help that I ugly cried in front of the nurses and the NP.  This opened a new set of worries for Libby’s health.  

What a crazy day in a life where Liberty has taken me to many crazy days.   We made it home around noon and she napped.  I dozed in between checking on her with her hand wrapped up and iced as if she were a boxer coming out of the ring. 

So, that’s the day in a life with Liberty.  I can curl up and cry or I can admit what an incredibly rough road we’ve been on and understand that all of us are on our rocky road.   

Sometimes I go down an emotional path where I believe God is punishing me or that I’ve done something so terribly wrong that Liberty’s body has gone through so much because of me.  I don’t believe that is how God works. Her physical struggles are not my punishment.  They are just part of journey. 

We’ve all got detours and construction areas that others may not even know about.  The paths we walk are not easy, but they are ours to learn from and grow through.   

But seriously she bit her finger so incredibly hard.   That detour wasn’t  on the map at all! Not sure how this will change our daily care of Liberty, but we will learn our way through it.  No other way but through.  

  Pray for and embrace the people around you.  Pray for and embrace the rocky road your on. Pray for and be embraced by the others around you.   

https://youtu.be/66DdsXfituQ

This life is so unbelievable at times that we really and truly need each other.   And maybe we all need spiritual hard hats to reach our destination safely. 

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. 

(Temporary Backup) Caminar Juntos

When I was seven, I can remember standing by the entrance of my Aunt Gina’s Methodist church handing out flowers while other children handed out the funeral programs.  We were smiling, greeting, and sometimes grimacing at the tediousness, but we were there.  We were a part of this sort of rite of passage which we call a funeral.  

I always loved helping because, well, the food.  Funeral food is so good.  This is a truth across so many different cultures. Proof that good food is a balm for our spirits.  

Now, I realize that by having the children there and being a part of the communal loss, the adults could physically see the promise and hope in us and tomorrow.  We represented the covenant that follows death: rebirth.  

At 12, I can remember sitting in with my great aunts while a family mourned.  We followed the cues of the family. Sometimes we would be laughing and looking through photo albums, tears falling down our cheeks.  Other times we were solemn and quiet.  We would tidy up, organize, bring out the food, help with the gratitude cards from the family, play with the younger children, once mow the yard and most of the time literally sit beside the family members as they took on the weight of their loss. 

Years later, being a part of the mourning process has become an integral part of my life.   It is important to show up for those we love in this way.  Except now, with COViD, we are so limited to being a part of this very important component of community.   We celebrate together.  We mourn together.  We carry our grief together.  In this we are together.   

Growing up grief was a buffet where we shared all of the courses amongst us. As if every  station of entrees represented the stages of grief.  As if every person coming by, sending food, condolence cards, and paper goods was shoring  the family up for the coming onslaught of emotions.  When we share our love of people, love of God, and this loss  it is an important communion.  In the time of COViD, we must find ways to celebrate the lives of those who have left us and mourn their loss together.  

Personally, I have rotated through the stages of grief with the consistently of rinse, lather and repeat.  If it weren't for the people standing by my side and carrying the sadness with me, I wouldn’t be here.  

Grief attends us when there is a death, a separation, or even a disappointment. There are many ways in which grief enters our lives besides a death.   Be mindful of the losses around you and be with them while they go through the process. 

Caminar juntos: walk with me.  This beautiful idea holds true whether we are able to sit in together or set up weekly Zoom meetings so that we can talk “in person.”  Carry this pain with me until I can carry it for it myself.  Help each other rejoice in the lives lived by creating memorials that fit the family needs.  Memorials that fit the communities needs. 

The attached articles have some reminders about grief and how to help us all walk through the buffet of loss with our community. 

https://www.huffpost.com/entry/ways-to-support-someone-grieving-coronavirus_l_5e95b255c5b6cc788eaf533d/amp

https://www.helpguide.org/articles/grief/helping-someone-who-is-grieving.htm

Be well and be blessed.  

Ileana 

***There are several varieties of this idea of walking beside someone in the Spanish language.  This is how I have heard it, but there are other translations. 
For instance, “camina conmigo” means walk with me and “camina a mi lado” means walk beside me. These meanings parallel cominar juntos which is “walk together.” Wanted to clarify for the many linguistically gifted people in my life. Thank you for time and for sharing your love!

Love God and Love People

Words matter, opinions matter, but we matter so much more. 

These last two  months have been rough for many of us. Politics and prejudice  have divided us in ways I would have never believed. It’s as if the ocean of humanity is stuck in low tide.  We’ve spent so much time stewing in our own corner and now our water is foul.  Our little ponds have become isolated and damned up: the water has turned rancid.   

 I can see a way to change our shared predicament.  My idea is hard when your feelings have hurt.   It’s hard when your ego has been devastated by someone you care about.  It’s hard when you see how passionately others cleave to their opinions and physically, emotionally, and  spiritually  harm you or people you love. It’s just hard.  My response: be kind. 

This isn’t a new idea, but it offers us the freshwater we all

need.   Every act of kindness brings with it a small ripple. And we need the ripples.  Every ripple influences the tide. 

Every single act of kindness offers the tide of  acceptance we all crave. And what we need more of today is the mighty power of kindness.  

The tide of change is coming and it is time for us create a wave. 

Let’s put our opinions about others back into our pockets  and focus on the amazing miracle each of us are.  The ripples we make need to be positive as there is a true deluge of ugly negativity all around.  If we don’t create positive ripples, then there will continue to be negative waves.  

Most people that spew negativity are hurting or have been hurt.  Or, they are driven to share their opinions so that they can feel justified and right. We don’t have to swim in every pool.  

I’m going to focus on spreading kindness and throwing out any negative thoughts that float through by brain.  Here are my three goals for every day of February: 

1. Give three random compliments.  This is one easy way to add more positive light into the world. Ripples. 

2. Focus on listening.  Truly listening to those around us.  If words matter shouldn’t we practice listening? Offering one person our attention with a positive intent is a gift to us all.  Ripples. 

3.  Concentrate prayers/kind thoughts/meditation on people who have hurt me, or even disagree with.   This may just mean sending positive light out to those who are spewing darkness. Ripples. 

Practicing kindness is one way to recognize the amazingly complicated and wondrous people are. In God’s eyes, we are magnificent- even when we are cantankerous.  Even when we are afraid. We are loved even when we are mean, because there is no “even though”.  We are all loved-perioT.    Our attitudes matter, but we matter more.  

Be kind and love people.  

We need each other. And it’s time to be kind. 

Attached is one of my new favorite songs.   It’s just this simple.

“Love God Love People” by Danny Gokey

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. 

            

Kaizen

       Life with a loved one with medical, emotional and cognitive needs is often challenging.  Often rough. There are so many little things I find myself explaining that are sad, and overwhelming and well, too much to think about for so many people.  For many others and my friends, it is too much, but it’s also so much of my life.  I know it’s hard on some of your hearts to continue to be my friend.

     

      I’ve used the allegory of the boiled frogs before, yet it still works today. We’re so busy doing what we need to do, that rarely do I realize how hard, inconvenient, and well, kind of sad the mechanics of life with Libby can be. We don’t realize because we’re insulated in the pan. 

      We know, based on the neurologists, that Libby’s neurological and physical effects are progressive degenerative.  That water will only keep getting hotter.  

       In my mind, there are two choices to living as a boiled frog: give up and let the water take me or  swim against current.   I choose to swim against.  I choose to try to be a better person every day, and I fail all the time. But I try. I keep trying to be the mom and teacher and friend I need to be.  

      This is partially why I have delighted in learning of the Japanese concept of continuously improving.   (Generally, this idea is used for the push to always work to make your business better.)  To me, it is a new mantra to simply move forward and find ways to be better.  

Better mom. 

Better teacher. 

Better friend. 

Better wife. 

Just better.  I know there are so many reasons to quit.  To ignore the medical possibilities.  To possibly wallow in the “give up already and just accept everything the way it is” type thinking, but I can’t.  I can’t.  It’s not comfortable. Complacency hurts.  

      

       Every time I allow that negativity in, I can feel my already anxiety and depressive brain pulling me down.  One way to keep myself from being pulled down it to think about my beliefs. 

Here’s a partial list of core beliefs that guide me: 

I believe we are called to love and love and love.  

I believe there is always a way to be better or something else to try. 

I believe my God wouldn’t put all of this on my “plate” if I couldn’t handle it.  

I believe that whatever the new challenge is coming at us will be a chance for me to choose growth and hope. 

I believe we have many opportunities to share our Joy and through that help others carry their Sad. 

I believe that life is hard and yet, still beautiful.  We are not called to give up.  

I believe to love and accept completely and openly with no hope for reciprocity. 

I believe I can do better with my God with me. 

For these and many more reasons I believe in Kaizen. A need to keep trying to be better.  And grow.  And learn. And fail and try and fail and believe. And get up again.  Laugh at failing, sleep, learn and try again. 

     We’re all on our path and possibly in our own boiling pot.  We weren’t put here to be mediocre or complacent, but to be a help to those around us and to ourself.  I am very grateful for the friends and family who can handle discussing the challenges that come with Liberty.   That is a gift. 

      So I’ll make a list of what I can improve on and what needs doing; then I’ll try again.  And work to be a little better everyday, pray and do the work needed. 

https://music.apple.com/us/album/better-days/1541590129?i=1541590131

    Just a little better.  A little stronger. Everyday.  Kaizen.