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. 

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.  

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.

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

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**

Busy

 
      Sometimes I dream of the Liberty we had.  In my dream she is supposed to be inside playing, instead she is high up in a tree.  Her hair is in pig-tails and she is wearing her Crocodile Hunter outfit. There are dinosaurs in her pockets. Or laying on the trampoline with her dogs. Or she's built a blanket fort and is singing to her stuffed animals, or her dinosaurs.  Whatever is in this version of the Liberty dream, you can assume she is doing her own thing and she is busy.  And I am busy as well. I prayed several times for this dream to change and that I would go and watch her play (or join her). Sometimes it happens. 
      I was not a child who could be still.  Ever.  From what I have been told, I was busy.   About the only things that seemed to settle me were music or sitting on Grandma's lap while she read to me. Beautiful Mariah could sit and play or cuddle and watch a movie- most of the time. Like the wind, she could have some super active times, but her movies would keep her attention for long periods of time. Now, Liberty.  Sweet Liberty was always busy as well.  She climbed out of her crib at nine months old.  She was uncontainable from then on. Grandma told me Libby's truth was in her name.   I had claimed her business when I named her.   That hasn't changed much. 
       Even now, Liberty is busy.  Her body is stiff and mostly unmoveable.  She doesn't have control over it, but her body continues to move.  All the time.  Sleeping, wide awake, eating, laughing, or pottying her body is moving to its own rhythm.  She has Deep Brain Stimulators, one of each side of her brain to calm her body down. She has a Baclofen pump that is routed through her spinal column giving her muscle relaxant continuously throughout the day.  She takes a Parkinson's med five times a day to slow the jerkiness of her muscles.  All of that and yet she is busy.
       During this time of quarantine, I have been able to see Libby for who she is now.  She is still sweet and funny we just have to pay attention to when she can let it out.  She gets impatient at times.  She is sappy and lovey at times.   She is tired a lot of the time. Blessed by this time with her, I have been able to get to know and see her for who she is now.   This is not the child I had ten years ago.  Or five. Or two years ago.  She is different.  She has to be.  Her body and brain has betrayed her, and all of us, in many ways.  I could be angry and sad, so very sad, at this betrayal, but that has consumed far too much energy already.  I can see her for the completely different and beautiful person she is.
      She still has a voice, of sorts.  Even though we are down to one-syllable words generally as responses.  I miss getting to actually converse with her.  So much.  I'd much rather talk with her instead of talking for her, but here we are.
      Please do not think this is a sad post.  It really isn't.  For the first time in my life as a mother, I have been home with my kid.  I never got to be home with Mariah.  I started working full time when Mariah was five weeks old.  I returned to work when Libby was six weeks old.  I have never not had at least one full-time job or at least two part-time jobs. I missed so much of my girls working for us.  So much.   I regret the time I missed with them, but I did what I thought I needed to do to provide for them. I now know this regular mom guilt.  I was busy.
      This time that quarantine has given us has been a blessing.  I believe this time has prepared me in some ways for our future with Liberty.  I feel more intuned to her body than I have in a very long time.  Life may not ever be this slow again.  Hopefully never again due to a viral pandemic!  I have learned so much from this time and do not want everything to go back to normal.   Our normal was already wonky, and I look forward to creating a new normal.  A normal that is slower in some ways.

       **We have been converting some of our family movies to digital downloads.  I was able to actually one video with Liberty playing.  For years, I could not even look at her younger pictures.  I feared I would cleave in two.  The half of me that is Liberty's would implode.  But I didn't tear apart. I saw the pictures from before.  Before the illness.  Before her body quit.  I watched and cried.  I let myself just cry and laugh and cry some more.  I sat in that revelry.  The beautiful sadness that is this kind of change in a child, or any loved one.  I sat there and watched.   And it hurt to my core, but I did not rip apart. I needed to not be busy and simply see her when she was.  For who she was so that I could see her more clearly today.  Isn't that crazy?!
       Let's think now about how to not be so busy.

        Be blessed and stay safe.  Know that you loved and needed.  We all need each other.