Friday, December 4, 2020

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. 


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

  


Wednesday, November 25, 2020

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

Friday, November 13, 2020

"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


Saturday, November 7, 2020

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.  

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. 

Tuesday, October 27, 2020

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. 

Friday, September 18, 2020

My Dear, You are Not That Powerful

 


When I was seven, my mom and I moved to Bakersfield, California to be with her best friend.  I remember the weather, the ocean, and seemingly endless fruit trees. I enjoyed hanging out with my friends and the new adventures that California offered, but I missed my Grandmother, my Aunt Gina, and Uncle Toots. We had already moved to Ft. Worth and Brownsville, Texas as well as moving from house to house an back to Grandma's in Amarillo. California was very different from the other places we had lived as it offered such treasures such as a neighbors orange tree. But still, I missed the comfort of stability in Grandma's house. 


This one of Mom and me is in California, I think. 

Top left is Verna, then Gina in the right  

Bottom left is Twigg

My wonderful cousin Tammy in on the right. 


That’s my Uncle Toots on the left in this one with Aunt Verna beside him. Gina must have taken this picture. We were in South Fork, Colorado. Still love that area. Geez, maybe I couldn’t pay attention to anything.  


(Lots of exposition in this one.   Hope it is worthy of your time my beloved friends.)

I've shared about Grandma and the important role she played in my life before.  My attachment to my Grandmother must have hurt my mom deeply.  I know that I woke up many times crying for my Grandma when we were wherever we were.  Sometimes I didn't remember where we were and was so lost. Fear would consume me until I would remember which apartment, hotel, or whatever we were currently sleeping in.  To this day, I cannot stand to use a pillow without a pillowcase, laundry piled high, and I hate to eat in hotel rooms.  These things remind me of homes that aren't home.  I was coded as a Migrant student in elementary which was so weird to me; I had two homes: Grandma's and Gina's. 

Aunt Gina and Uncle Toots, his name provided during WWII, also helped to shape who I am.  Gina, Verna, and my maternal Grandfather were siblings.  They were tall, strong pillars filled with stubborn grit and hard work.  After my grandfather passed when I was not yet two, Toots and Gina stepped into my life with the assurance that they would always be there to help Mom and Grandma raised me. I never noticed whether or not Gina and Verna loved my Grandma, or even liked her.  Grandma was after all their brother's widow.  Years later I learned of some drama about how best to raise me, but I would have never known and don't want to know.    To me, these people were a solid wall of love.   They provided the equilibrity I needed.   

Gina's sister, my Aunt Verna, was also a pinnacle in those early years. I spent alternating weekends with these church ladies throughout my early years.  Went with them to their Sunday school class in my shined up shoes and "church dresses" Gina kept for me. This is where I was enrolled in the "pinch and twist" method of "sit up straight", "be quiet", and "Twig why can't you sit still" classes within the beautiful old ladies Sunday School class.  Later, there were girdles involved, but that is another story.  Aunt Gina saw yard sales as "why pay so much for new?" was a mantra. She was painting, canning, gardening, helping, organizing, and churching. She said she liked to stay busy, so do I.  The only time I seemed to miss weekends and holidays was when we were living in another city or state. 

There weren't many men in my young life on a constant basis. Toots was the most important man around for those early years. I matched his steps around the house, the Service Station they owned on 6th street, and when fishing and hunting.  My favorite was watching him with "old guy" friends who come to the station to hang out.  I loved the community he had and how much these men laughed together.  These old guys would holler for me to come and sit with them while they told funny fishing and hunting stories.  "Come over here Twig, listen to this one...".  I still can't smell Old Spice without missing him.  Toots let me test my boundaries and be myself.  He didn't have all the requirements Gina did.  I was allowed to wild, even though I was a girl. Little me was safe with this man. We would sit and talk in the back yard.  Toots and I could be still together, which was rare for my little ADD body.  

  We had been in California, hanging out with the massive roaches, for over six months when we got the call that the Grandpa figure in my life had passed away suddenly.  I was devastated.  I remember not being able to be consoled. I remember actually crying, and I have never been good at crying.  Part of the safety net that I was pining to return to was gone.  

It's not like this was the first death in my little world; I had been reared in the funeral and grieving process every Sunday I was with them. In the summers, Gina would take me with her while she was "sitting in" with a friend from church or a neighbor who had lost a loved one.  We would go, take food, straighten up what needed it, and as I got older I would help with the children younger than myself.  I knew how to sit in grief with others.  But this loss was too great.  He had left us while I was away.  I could not sit in anything.  Grief was everything. I remember writing him letters and making everyone listen to me read them.  I know I made Gina cry for months.  Writing those sappy songs and letters to Toots was my way of sitting in my grief- of voicing my loss.  

He had been getting slower and less active over the years, but he still did everything while I was with them. Apparently, Toots became sick, diabetic complications, I think after we moved so far away.  In little Ileana brain that translated is death to the belief that he would not have gotten so sick if I had stayed in Amarillo with Grandma, Toots, and Gina.  I would be staying with him every weekend and he would have been pushing himself to hang out with me.  I wasn't there = it was my fault that he had died.  I had left him to go off with my mom.  I had abandoned him for our California adventure. This was simple math for me. My mom as also devastated as she had to give up her California dream to get me back home.  You can't imagine how ugly that looong bus ride back to Texas was.   

After that, I did not allow any other male role models in my heart. 

Fast forward a bit and between lots of traveling with my mom during the summers, when I was ten I saw 13 states.  Shortly after one of our summer traveling, my mom was bedridden.  We learned later that she had Diabetes and Lupus.  She wanted to travel and work and I just wanted to be in Amarillo in school and with Grandma and Gina.  In my little girl's brain, I caused her to be sick, as she seemed to be fine when we were on the road. She was happy on the road.  She had to come home to be with me which took her away from traveling, but that made her sicker. In my mind, if I hadn't wanted to go to school, she would be okay.  even though traveling was fun it was a community unto itself, but I missed my people.  Traveling with her taught me an encyclopedia of knowledge just about people. Mom continued to struggle with her health and yet managed to do some great things. I continued to blame myself for being so hard to raise and such a "handful".

After that, I did not want to want to be mothered or be a burden to my mom any more than I already had.  I know that my mom, like so many others, did the very best she could.  

Skip forward several years of my leaving every summer to travel, work, and live in tents and trailers for the summer. Following my final summer traveling, I worried that if I left again, Grandma would get sick. I went through middle and high school with normal tortures and triumphs.   Several years later, Aunt Gina passed away, in her sleep.  I was trying to go through college as a single mom to Mariah.  I had not done a good job going to see her as often as I should have.  Life was hectic and I was trying desperately to be the statistic I was: a single mom at 20.  I could blame it on many things, but I was caught up in trying to become who these beautiful people who poured so much love into me believed I was.  I was trying, so I didn't see Gina or Verna as often as I should have.  My wanna be grownup brain blamed myself.  Gina's sister, Verna, followed a few years later. These losses added weight to the blame I had become so good at carrying.  Now it was my banner.  A medal of honor of how to fail people who loved me.  I could continue to list the beautiful people who I have loved that have passed away too soon, but that is common for many of us.  

Fast forward to having Libby and finally finishing school.  Diving into the marathon of teaching was everything I could have dreamed of.  We rocked and rolled through many great years, then in 2008 Libby's body began rebelling.  Continuing to love Liberty through the battle her body wages awakened the same fears with the addition of blame.  Libby got sick on my watch. My little girl brain explained it all so perfectly; people get sick around me.  This thinking was almost debilitating in the early years of her disease. There were days when I did not think Libby was going to make it or if I could survive her illness. Doctors have told us that we may never know exactly when Liberty became infected with encephalitis (although we do know a tick was involved).  There are still so many what if's leaving gaping holes for my self-blame and guilt to filter in to. 

Because of her illness, I have allowed myself to wallow in the blame and guilt.  

Quarantine hit and we learned to all be at home together.  We adjusted and rolled through the end of the school year.  Then Rachael got sick.  At first, we thought, and the clinic conquered, that she had a UTI.  Two weeks and two rounds of antibiotics later, she was driving to the hospital with diverticulitis.  She was in hospital for ten days and had two surgeries. In the second surgery, the doctor took out a large amount of her colon due to infection.  This became a very dark time for me.  I knew that once again something I had done, or not done had been the catalyst to her illness. Or maybe this was some penance I needed to pay for a past misdeed.  I knew it was my fault.  

Because of this, I began to spiral into ugly habits. 

She was all alone in the hospital and Libby and I were all alone at home.  That was the worst Mother's Day ever.  I prayed and cleaned.  I meditated and reorganized.  I shouted at everyone's God. I have begged and bargained with God to heal and save Libby. How in the hell could I be as healthy while so many people I loved got sick?  Please take my health and my abilities and save/protect _____________ .Why couldn't God make me the one with the illness instead of the people I love?  It was five days into her hospital stay during her six-hour surgery when I finally got some clarity.  

I was just off the phone with the surgeon trying to attend to this very important update.  I kept thinking "just get to the point!" and tell me whether or not she is okay.  In what felt like 12.3 years later, he finally stated that "She was going to be okay, but it was going to be a long, slow recovery."  After I got off the phone, grateful for all of the info the doc shared with me, I sobbed.   

Again I began bargaining to take this struggle from Rachael and give it to me while begging forgiveness for whatever it was I had done to cause this,  After what felt like forever, this feeling of peace washed over me and the words came to me, "My Dear, you are not that powerful.  This is all out of your control."  Then the knowing came that these things are going to happen around me but not necessarily because of me. That maybe I was given my blessed health to be the one who caretakes. I began to understand that bargaining with God doesn't work.  

That doesn't seem to be how most faith-based systems work. We learn through our mistakes and are blessed with continued love and support. As we learn to do better, we become better. Life isn't an ongoing version of the Scarlett Letter where we wear our sins in an act of deprecating self-flagellation. Bargaining doesn't work. Where  I could then see my world, where I stop punishing myself and my body for being healthy.  I would be able to finally put the blame and guilt behind me and do what needed to be done for the loves in my world.

After this, I allowed myself to lighten the guilt load. 

This new understanding that self-blame is like wearing a straight jacket every day while trying to play Twister was revolutionary.  Little Ileana didn't think she was powerful at all, she just knew that she was the common denominator, so it must be her fault. rooted in ego, help.  I had to let it go and focus on what I had control over.  

I had to rejoice in my strength, instead of sabotaging myself with binging and drink, I could continue to help the loves around me. So, I stopped.  When the weight of what you're carrying seems overwhelming, remember you just aren't that powerful because we aren't meant to carry these things alone.  That's why our physical and spiritual community is vital.  Let's learn to be less powerful together. 


Libby is a rock star and has rolled pretty well into the school schedule.  I am ever so awed by her resilience.  Be safe and know that you are loved.  

ileana

This has been my perspective and my own growth; none was meant to hurt. 

Sunday, September 13, 2020

Community

      Years ago, we took a grown and independent Mariah and Liberty to a concert in Tulsa. It was the grooviest venue.  This old theater building wasn’t a huge space which translated to a very intimate concert. The crowd encompassed a variety of ages and races.  There were very few seats, so we joined the standing crowd close to the stage. 

Normally, this is a risky move. Libby is a small person at 5’3”, but her chair is huge.  Her chair out weighs her by over 30 pounds, and it’s long and somewhat wide. We have to clear a path for her. But this concert in this tiny venue in Tulsa, Oklahoma was different.  

As more people came in, we were getting pushed a bit and crowded.  I won’t deny that in these stressful moments I am a mother bear.  You mess with my kid’s chair and the North Sider comes out.  Mariah and Rachael reacted as well. We were surrounded.   

As the main artist began her set, the largest influx of music lovers came in and we were feeling claustrophobic and unnerved.  

I tried to move Libby a bit and several older ladies saw what I was trying to do.   Suddenly, we were ringed by these beautiful people. These ladies, who didn’t seem to be there together, encircled our little four, and kept us cocooned  for the next several hours.  

It was surreal, being encircled by these strangers.  We shared the love of the artists and the need to keep Liberty safe. We sang and danced together in our little area. We were safe and able to enjoy the concert. Brandi Carlile and KT Tunstill were brilliant.  It was a wonderful night.  
 
Community is vital to our emotional survival. We, as a populace, seem to be struggling with supporting one another.  Especially if we disagree. Disagreeing about masks and herd immunity, elections, economy, and whose lives matter. We are catapulting words at each other and no one is listening. Or, we don’t speak, to keep the peace.  

I crave that communal feeling of knowing I am surrounded, whether in the flesh or virtually, by people who share beliefs, or hope, or love, or simply support.  

The more we separate from our community, the weaker we become as a people.  Some divisions are going to exist, but today’s atmosphere feels discordant. We are allowing  ourselves to be pulled apart to stand alone while yelling into a void of other people yelling into the void.  We hide behind a screen instead of doing the work our people  need.  So busy yelling against this void, that we’re not protecting those around us. 


Please join me in listening more and intuiting the needs of others- even those we don’t agree with. Endeavor to create circle of safety for those may need it.  Even if you don’t know them. Perhaps especially if you agree with them.  Listen more.  Maybe we can find our way to the sense of community.  This maybe imperative for our future.  

Please endeavor to create that accepting, inclusive and encompassing circle of love.   We are Ohana.  We are all one community.  We are all one squad.   We are family.   AND we can all use the support.  

Saturday, September 5, 2020

Michelle’s Mom

Greetings,

Michelle is my longest lasting friend. We met the day before we started school. My Grandma’s house was near one end of the block and Michelle’s house was on the other end. Stacy, another friend, joined us in early elementary.  There were three of us coming up together in the same grade level.  There were several others with a three block radius. Those blocks ends became our boundaries. Brook street was ours: our own book ends where safety was between the ends and being home before sundown. 

Michelle’s house was a unicorn in my world; she had something rare as both of her parents lived in that house. What’s more, she had a grand, Mamie, cousins, aunts and uncles living in our city. (My family was a bit more scattered.)  Stacy also has a wonderful extended family that we love(d).  My 70’s didn’t see a lot of married couples raising their children. Michelle has a great brother that was a satellite in our girl world.  He’s become an excellent man and successful teacher. 

Michelle’s first born, Anthony and my Mariah are six months apart.   We have paralleled throughout our lives. 
Michelle’s mom and my Grandma worked in the cafeteria of our elementary, Rogers, and Stacy’s mom was a custodian at our middle school, Mann.  To say there were eyes on us is a understatement. We came up together even though we all took very different paths.   

And we’ve shared our lives together.   Marriages, divorces, babies, birthdays and funerals. Michelle’s mom is one of the first calls I made when Grandma left us, and later that year when I told her we were moving my mom to Happy I called her again.  Our moms kept track of each other, and us, in many ways.  To be loved and supported by Stacy’s mom and Judy is an exceptional gift. 

This world has lost another amazing human.  Judy Perales was my second Mom.   From her I learned how to work the tortillas, don a formal dress, straighten a room, and appreciate “white girl menudo” which is menudo without the tongue.  Judy made sure I was included and involved in so many ways.   If we couldn’t afford it, she paid- didn’t know that until later in life. They brought me with them on trips to Mexico, skating, the Mall and Wonderland- to name a few.  I learned patience and directness watching her with her husband, Junior, Michelle and all of us.  I leaned how to be there for my own kids and show up for my daughter’s friends because of her.  



One summer I had been away with my mom.  When I got home I discovered that my bedroom at Grandma’s had been cleaned, painted and organized.  It was lovely.  This was proof that I was still their friend and worthy of such a lovely kindness. 

Another time, I made a comment about my weight and Judy stopped me and told me that I needed to be healthy while not letting what others say about me get to me. 

Judy has made sure to come to our big celebrations and fundraisers.   Even into last year she has been an important part of our lives. 

For these reasons and many more, I am beyond sad due to the loss of Judy.  This world has lost a great, funny, sarcastic woman in Judy Perales.  I am grateful for the love, lessons, and inclusion she shared with me.  

Michelle, thank you for sharing your mom with me all these years. I am beyond grateful for you.   I’m sorry I can’t carry this pain for you.  Grief is a rocky ride and I pray you feel your mother’s immense love for you and the strength of those who love you every day. Love you!

Lagom introspection

Introspection:

My life is full of extremes if I'm not careful. For a Libra I find myself searching for balance. Always trying keep my world centered. When my world feels off center then I cannot keep the stress in check. Too often, I will over do whatever it is. For instance, I like to get my jellies made in late July and early August as the fruit is plentiful and I have time. It is not as if I could just do a single batch. I have to do all of the batches. Whatever it is, I go 110% or none.




This holds true with all of my habits. When I smoked, I smoked a lot. When I exercise, I work out a lot. When I binge, I binge a lot. When I study, I study a lot. And so forth. In May, two months into quarantine, while Rachael was in the hospital, I decided that I was going to force myself to stop binging. So, I ate less. A lot less. Then I had a hard talk with myself because I have battled this pendulum many times in my life. Many times. Disordered eating is an old frenemy of mine. (I remember being on a diet at the age of 8.) In a world of so many uncertainties, controlling my lack of control has been my jam. I am trying to be better to myself and handle the stress in healthier ways.


I’ve struggled throughout my life, but especially since Liberty’s body has changed and deteriorated. A sad and honest part is that for a long time I didn’t want to take care of my body for me. It was terrible eating well while Libby dropped weight everyday. It was hard to not binge and over drink when I knew her body was shutting down.  It didn’t seem fair that I could be so healthy and she isn’t. Actually, it sucks. I’ve punished my body in many ways and yet, still blessedly strong as hell (knocking on wood now). And Libby’s body won’t be strong. 


Yet, she is still here and fights her body in her own way. And although we are emotionally symbiotic, I’m pretty sure my body isn’t affecting her health. (More on this to come. Caretaking others is a mind mess in many ways.) We are a work in progress.


I tell you this so that I can share the importance of this word. I learned of "Lagom" from a Podcast; one of my True Crime podcasts- no doubt. The archetypical Swedish proverb, “Lagom är bäst,” literally means “The right amount is best” but is also translated as “Enough is as good as a feast” and “There is virtue in moderation”. I don't have this near magical thing called moderation. I have to work for it. I have been pushing to recognize when I am full and have enough. As in every thing, I am a work in progress. As are we all. 


What makes enough: “Enough is as good as a feast”. Every day is enough. We are enough. You are enough. We create what is enough as we learn to be tuned in to what is feels right for us as individuals.


 I’m learning to create limits that are healthy and support who we want to become is important. We are all on a journey of our own. Sometimes our paths overlap and diverge. It’s vital to protect and support the road we’re on. Learning limits is like choosing my favorite roads to run on my long runs: I know the layout and feel positive and uplifted by the scenery.  I am supported and secured within my new healthy limits, even if I am testing the boundaries at times.


Finding healthy limits makes sense especially during the time of such uncertainty.


For all of us I hope we find Lagom in our lives.


Each of you is enough. Even while we’re working to improve and strengthen. Even when we fail. Especially when we fail. When we’re ready to give up, you’re very enough.

Share the blessing that you are.



Saturday, August 29, 2020

New Balance: Lagom


Rachael and I returned to working in the brick and

mortar classroom on our campuses. We have been

training, collaborating, planning, and researching.

We are organizing, cleaning out, and arranging

student seats. We are re-imagining, re-learning,

re-trying, and re-tooling education. We are comparing

masks and how to keep our glasses from fogging

and our nostrils from drying out.  This is a relentlessly

stress filled, overwhelming time for teachers and yet

it’s exciting! Nevertheless, it is good to be on campus

with my peers preparing for my future Loves to join us.

My fellow teachers, administrators, and staff bless

me every day and make me a better person. 


The flip side of this is that I am not with Libby every

day now.  I am at school and she is either with Mariah

or Jennifer depending on the day. This is hard as I have

not ever had the chance to spend this much time with

either of my children. I have spent my parenting years

working at least one job and going to school for my own education.  I lost a lot of time with my girls.


The last five months have been challenging

and a great blessing. I didn't get to see Mariah as much,

but we were able to talk more. There are many other words to convey what this time meant for me, but words fail me.Truly a stressful godsend to have that time with her.  She is now up several pounds and has filled out quite a bit! She is even wearing some adult-sized clothes again.  


After her drastic weight loss a year and a half ago, I went through her clothes but held on to many that I hoped she would gain back the weight needed.  That alone is wonderful as we have scaled back on the number of tube feedings she gets in a day. She got her tube replaced last week and we were lucky to get her in when we did- right before the tube popped out.   I'll continue to monitor her intake and struggles with Parkinson's swallow to adjust her caloric

intake as needed.


The stress is real in the land of education. The level of uncertainty as we create new norms in education is real and overwhelming. The cognitive load is great and overwhelming. Yet, we will preserver. We will learn and adapt and do what is needed for our students, parents and peers.


Beautiful teachers stay strong. We can do this.


To all reading this please that you are loved and are worth far more than you know. 

Ileana





Monday, August 3, 2020

Selah

Selah is found 71 times in the book of Psalms
and three times in the book of Habakkuk. There
are many different definitions for this
beautiful word: in Greek, it is an interlude or
intermission, in Hebrew, it can be a break,
a silence, a pause, in Arabic, it is a prayer or
a connection.  Other sources refer to Selah
as a rock or even forever.  Early in my church
years, I learned that this was a time to rest. 
A holiday. A break.  Respite.


Although this was forced upon us, quarantine
has offered Selah, a time to slow down. 
To enjoy the time with Liberty and to see her
for her beautiful self as she is today. To
embrace the time with Rachael
and love her through her healing. 
To relish the conversations
with my family and cull out time
together. To delight in seeing Mariah and
her new husband as they create
a life of love. I have also learned many
things about myself.  To appreciate the
beauty that is to sleep and sit and be
still (as best as I can).
Selah. 


With this forced rest, I have come to realize
that I need to listen to the immense noise in
my head and categorize it as
useful or useless.  Much of the discordance
in my world is my own symphony less and
full. Useful noise may be reminders of what I
need to get done and has notes I can follow. 
Useless maybe guilt over believed past
transgressions or even presumed failures
and follows no rhythm. Useful noise can be
unpacked and taken care of.  Useless
noise cannot.  Too often, the useless noise
has occupied
my mind and kept me doing what needs
to be done. 

My brain tends to go 100 miles an hour 24
hours a day. I have spent years forcing it
to slow down so that I can sleep.  I’ve often
mused that it takes a freight train to slow
me down. Once I gave myself permission
to stop and listen,
I can put that cacophony into a pile and
either deal with it or throw it out.  Mostly. 
I am a work in progress.  A new skill I
am hoping to hone over time. Like most
things worth listening to, well done practice
is key.

Blessed with a beginning melody of Selah of
the mind untangling these noises have been
easy- in a way.  Useful noise is positive and
useless noise is ugly.  I’ve learned that the
most important conversation
I am going to have is with myself, and my
interior dialogue was terrible.  Mean. Ugly.
And riddled with self-deprecation.  Now,
when my revelry is interrupted, usually
when I am exhausted or overwhelmed,
I can call the useless noise what it is and
move on.  Just like in real life, I don’t have
to join the refrain.  

Being a mom to a child with many special
needs is a heavy gift to bear. At times is a
heavy burden that broke me. Other times
it has hurt so much I wish I had broke.
But at all times, loving Liberty is the
easiest thing to do. Even when she is
crying and no one knows why except her.
Even when she lost the ability to control
her speech, arms, her legs, her bladder
and her bowels. Wonderfully, she hasn't
lost her smile. This isn't any gig full of restful
phases; it is too often a crescendo
of heavy overwhelming growth. Yet it is
so worth it.
The moments of Selah are beyond.


Rona has forced me to listen.  To hold the
rest as important as the notes in between.
In this, I have been blessed.  This
time is ending.  I hope to keep the true
sense of Selah with
me in all of the varieties
of the word.  
For all of us, I hope that we can find and keep
our concerto of Selah going as we return to
in-person working.  Taking the positive lessons
from the quarantine with us may be the hardest
lesson of all. I wish you will know you are needed.
And appreciated. And capable.  And loved.
And your own Selah.  And maybe, we are
Selah to another who
needs it.


I am grateful.
Be safe and well.

ileana
 **Capitalizing the word Selah for effect**