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.

  

Gatherings

Thanksgiving has always been my favorite holiday.  As a kid, this was when cousins, aunts, my brother and his wife, and more family would gather.  I would be surrounded by generations of determination, strength, laughter, and excellent food.  I was so happy when I was allowed to help in the kitchen with the grownups.  It was that communal time with all of those boisterous women that I embraced joy in feeding others as a way to show love. I can still smell Grandma’s homemade yeast roles and dressing every time I think about thanksgiving.

 Isn’t that we do this for?  To imbibe food and family with a sense of belonging. 

In recent years it has been a tumultuous time of year.   Invariably, Liberty would have an appointment for a procedure, pump refill or a check in and we would be driving back or forth to Ft. Worth.  We’d still try to keep up at least part of the traditions for the big turkey meal. The exact day we celebrate on isn’t as important as the ritual of the eating and coming back together.  

Isn’t that we do this for? To follow in the healthy traditions that feed our community.  

This year we are a small crew due to circumstances and COVID.  We are missing Rachael’s sister and family. They have suffered a big loss in the passing of her mother in law.  We shared their loss with them and pray for peace. 

Prayers and lifting each other up is so vital now.  As I ran my own Turkey Trot this morning, I reflected on my little town and all of my communities. Praying a mantra as I circled the town: with every step and every breath I ask for health and safety of these people.  With every step and every breath bless us with continuous kindness and love.  My circles may be small, but we are strong when we share in love and kindness. 

Isn’t that we do this for? To share in the communal meal which strengthens us spiritually, emotionally and physically.  

Pineapple upside down cake was my grandmother’s favorite.   She taught me when I was young and always requested me to make it for her. It’s a privilege to continue using recipes.  Helps to keep the traditions alive.  And the memories.   

Isn’t that what we do this for?  Gathering in memory or person. Celebrating our family in whatever form our family comes in. 

Part of our shared experience has to be the creating, telling and retelling of our stories.  It is within these magical moments of sharing and retelling stories that we are open to truly embracing one another.  The more we tell these stories the more we bond together.   We are all a story. 

I want to know all of your stories and share mine.  We have a need, whether we want to admit it or not,  to bond together through our uplifting memories and through the harder and more painful  memories. We have a need to share ourselves through the power of story.   Now we may be sharing through a computer screen, a phone call, or in person. 

Isn’t that what we do this for?  Inviting others in to share our love, pain, and laughter through our experiences. This is a chance to tell and hear our stories. The mode doesn’t matter as long as we keep sharing our stories and passing them down. 

All across our country smaller familial groups are gathering in gratitude. We have so much to be grateful for.  Gratitude is an action, not just a thought.   We can meet each other where we are and find ways to celebrate the gift of group acceptance.  

Isn’t that what we do this for?  Graciously inviting and accepting other beautiful people into our “family”.  We can do this kindly and safely, using whatever mode: online video charges, snail mail, email, and phone.  We will conintue to find ways to reach out give our thanks.   Thanksgiving isn’t cancelled; it’s just going to be different for all of our safety. 

More than ever I am missing my communities.  Missing being with people. Missing laughing and crying together. Miss sharing Libby with her extended community.  Miss singing together with friends.  Miss all things “community.”. 

Miss hugging.  I miss hugs, so very much. But I cannot risk the health of anyone because of what I miss.  So, we are trying to use the technology to help keep our communities together.   

Thank you for those who have talked with me over the phone and various messages.  Thank you for those who have had brilliant and poignant conversations in person and through emails.   Thank you for fostering our community through these kind acts. We can choose to gather in the safest ways possible.  We need that. 

Be blessed and known that I am grateful for each and every one of you.   

Grandma Linda, Mariah and Derrick 

Rachael healing even with my hair all over. 

My loves..... just missing the niece and nephew.  
Happy 1st anniversary to Derrick and Mariah!

https://podcasts.apple.com/us/podcast/unlocking-us-with-bren%C3%A9-brown/id1494350511?i=1000500182333

"I'm Okay" is NOT Okay

 

      Here is how many conversations go with my peers and students at school: 

"Hey, haven't seen you in awhile. How are you?"

"I was out for two weeks.  Two in my family had the virus. Everyone is better now, so I'm okay, how are you?"  Her eyes were surrounded with heavy bags and she seemed smaller.  Her answer of okay or fine brought a halt to any further exchange.

"Wow.  Glad they're getting better......" 

    It was on a Monday, when I am excited to see my peers and students, that a similar exchange happened.  I had this urge to follow this student and ask again how she is doing.  So, I did.   

    "Wait. I don't feel like you really told me how you are doing.   I ask because I care.  I know you've been in quarantine and I know that can't have been easy.  So, how are you doing now that you are back at school?" 

    We had a lovely conversation about what she had been through, quarantining in her home where she stayed in her room, trying to safely help with house work, and feeding her younger siblings.  Plus she had schoolwork of her own as well as the work her siblings needed to complete.  

    Missing this much time in our regular daily routine is not easy.  Even if you maybe don't enjoy all of you classes, or your peers, or your work in general, the disruption of repetition within your schedule negatively impacts our own social and emotional health.  

    I think many of us are carrying around a lot of stress, anxiety, loss, and fear.   There are so many unanswerable questions in our daily lives, that there is a pervasive feeling of  uncertainty.  Because of this, I believe we need to practice truly checking in with the beautiful people around us.  

    According to Anna Goldfarb, in her New York Times article, we need to be using more open ended questions, such as: "How are things?" or "Is anything on your mind?"  One of my current favorites, "what is making you smile today?"

    Not only do we need to ask open ended questions, we also need to know why we say we are okay or fine when we really aren't.  It's so easy to keep the veneer up and shine people on when we really aren't okay.  Really aren't fine.   We're sad, scared, anxious, or a myriad of other emotions that mean we are not okay.   But keeping that invisible mask on makes us feel safe somehow, or even protected.  For me, it is easier to dismiss what I am feeling or going through, if I don't talk about it.   Then I store it away.  That is a recipe for being even less okay.  

    It's okay to say I am not okay, but I am working on it. But I am learning to let myself cry. But I am trying.  But I see the beauty in everyday.  But I know that this storm will pass.  But.... It’s also okay to say, “thank you for  asking, but I can’t talk about it right now.  Check in on me later today.”  

    We already have so many things separating us; I believe it is time to open up and work through our struggles together.   We all have something we are dealing with and maybe we can share the load.   Every day the focus needs to be on how to lift and shore ourself and others up. 

    Rachael had her emergency diverticulitis surgery six months ago.  We have been holding our breath since her surgeon said that they may have to postpone her surgery until sometime in the spring.  The local hospitals are struggling to meet the needs of the COVID cases as well as the need for scheduled and elective surgeries.   As of today, 11/14, her surgery is still a GO for Wednesday, 11/18.  Praying and hoping that she can get the last of the infection removed and get everything in her belly safely connected once again. She will have to be alone while in surgery and afterward.  Please lift the doctors, nurses, and all of our wonderful hospital staff and Rachael up as this will be a tough week for her.  

    Praying that you can all see the beauty in sharing and lifting each other up.  Be kind and stay safe.  You are loved.  

https://blogs.psychcentral.com/imperfect/2020/07/why-we-say-im-fine-when-we-arent/

https://www.nytimes.com/2020/07/28/smarter-living/coronavirus-how-to-check-in-with-a-friend.html?auth=link-dismiss-google1tap

Family

       When Libby’s body started quitting on us and her brain decided to show its damage in 2009, it was both a struggle and a gift to get to school everyday.  Between new physical, emotional, and intellectual challenges and the rough rodeo that is medical insurance I was a mess.  A lost mess.  

      My school family  were amazing.  They sent us to each new children’s doctor, new hospital with love, hope and extra money for food. I had to learn to lean on other people.        

       I’ve always relied on my God, my Grandma and myself.   Going through the devolving of Liberty’s health taught me that I would have to rely on others.  And I didn’t want to.  I didn’t have the heart space to be open to any new people.   Then the bubbly, curly headed, bossy little lady came into the teacher’s lounge: enter April Wolterstorff.  Now those who know me, know I’m not a fan of very loud and bossy women.  I like calm and this beautifully boisterous woman wrecked my quiet in many ways. Keep being your bold and fierce self! 

       She told me she was going to be my friend.   What did the little weirdo know about me and my life.  And friend me she did.  She told me about her son, Kyle and how she’s leaned to be his Momma.  

       April gave me lists of people to call and organizations to become a part of.  How to reach the Special Needs departments of health insurance. How to ask for the right person to get the right appointment in the confusing world of children’s medicine. 

        April also tried to help me voice my emotions.  I had become stoic as a shield.  Six months into Libby collapsing on the way home  from school and I had not cried.  Doctor had asked me if we wanted to focus on quantity or quality of life Libby, she was 12, and I hadn’t shed a tear.  Nine months in and I hadn’t been able to  release  the valve. April told me it was okay.  I could feel what was happening to Liberty  and my family and not fall completely apart. She taught me so much. 

         I ended up bringing Liberty to Caprock with me for her high school years.  April was in charge of the ACC department and she continued to amaze me with her knowledge and patience in training me. Libby started her freshman year walking the halls and finished in her wheel chair.  (She did kind of zombie walk at her graduation with immense help.) April adapted and adjusted with Liberty as her disease progressed taking more and more from her body. She allowed me to be the teacher and not be the broken momma.

         April also calls me on my shit. If I’m hiding my emotions she will often shoot down my shield until I tell her the truth.  Everyone needs a gentle truth detector in their life.  I’ve loved her healthy and as her body had rebelled against her.   When she had to leave teaching I was devastated, but I knew that her body needed what it needed.   And I love her still.  

         She has been my “go to” for all things since that day in the teacher’s lounge. Now she’s moving away to embrace wonderful opportunities for her family. 

 I don’t have a place to put these emotions.  

  I will forever be grateful for her love and support.  You keep on with your glittery self.   Shine on my beautiful friend.  My sister. My claimed family.  

 And thank you. Thank you.   Thank you my Texas unicorn.  

Mariah and I made the trek this week to Cook Children’s to get Liberty’s Baclofen pump refilled.   Because of the upcoming surgery Rachael will need, I jumped at the chance to spend some time with Mariah.  We have never had any mother and daughters trips, so off we went.  There and back again within 36 hours. Grateful for any time I get with Mariah. She has truly grown into the woman I dreamed she would be.  

Thank you Mariah for being my chaperone.    

Actually let Mariah drive and then I crashed.  

Mariah always be your fearless and bold self!    


Take the time you get with your loved ones and your chosen family and embrace them for the bodacious people they are.  

“Big Life” by hONEy hoUSe.  
https://share.icloud.com/photos/06zLBVFCtssUL9G8aWwA9EJQg

Today is November 7 and our nation is beginning a transition.  Please focus on the beauty in your life and do joy spew negativity on other people.  Be kind. Be uplifting.  Be the light we are CALLED to be. 

  

Yes there are places for anger, but spewing anger at others isn’t going to help us ALL heal and grow forward.    Both sides have fear and claim injustice.  Stop yelling and listen with an open heart.  Hear before hurting.   Be gentle with one another as we all learn to navigate this new era. 

Waiting

I don’t think waiting comes naturally to most of us. For me, sitting and waiting is torture.  Being Liberty’s  mom had taught me many things, but especially this: waiting is good, it is being idle that chafes.  Just sitting in my fears and worries without any little tasks to do is torture. 

Today, Libby and I are sitting in the hospital parking lot while Rachael gets a procedure done.  There are several inches of snow and ice already and more looming. So, we sit.    

Things I do to pass time:

Thank you notes

Love cards (get well cards)

Add notes to journal 

Update calendar

Clean out vehicle (warmer weather)

Make time intensive phone calls 

Nap

Waiting has taken in new levels due to the Corona virus.  We have been back and forth to many appointments where I get to go I with Libby and no one else is allowed. Or, Libby and I are waiting while Rachael goes in alone. If I’m waiting for Libby, I have trained myself for immense patience and I bring Liberty and Ileana safe snacks which keep us both from getting fussy. 

My faith tells me that it is in the inner stillness of waiting that we gain our strength. I know that my doubts, hurts, fears and regrets can be subdued when I focus on the beauty of the moment. Focus on doing the best I can in that moment. That is when I am reminded of the promise in today. All else can be handled if I can find my way to that inner stillness.  (Since outer stillness isn’t going to happen for me.)

Waiting is an opportunity for growth. 

We are all waiting on various things, people, or events. Some we have control over and others we do not.  Sometimes we are waiting on ourself to gain the confidence needed to push toward a goal.   Or to step out of our comfort zone to give something a try.  Or waiting to forgive to get over something painful.   Or waiting for the peak of positive COVID cases to wane.  Whatever it is you’re waiting for, the fortitude is there to work towards what is desired. 

In this day, Libby and I listened to a favorite playlist and  several Podcasts that make her laugh.  In every moment where she is safe, and happy, and reasonably healthy; we are blessed.  

**Rachael’s procedure went well. Now we wait for news of her upcoming surgery.** 

Waiting is an opportunity for growth.