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.

Zombie Apocalypse be Damned

      We had a plan (I had a plan) for the predicted Zombie Apocalypse for a long time.  The plan included using me as the scavenger and Rachael as the defender of our home.  We would keep the girls and ourselves safe that way.  In the perfect scenario, Mariah and her Derrick would be home safe and sound with us.  Linda, Jennifer and her crew would make their way here and we would hole up together.  We had food and space to keep us all safe- wait, everyone’s got their own life now.   And then the Big Q happened.  Quarantine due to COVID 19 happened and everyone was shut into their own home bases. 
      We were both teaching our classes using Google Classroom and Google Meets.  Libby didn't understand why she wasn't getting to see her people, except weekly visits from Grandma Linda.  The feeding, medicating, lifting, bathing, adjusting, moving, tube feeding and potty changing schedule stayed pretty much the same.  Except now, we were bouncing into the front room to get Libby taken care of.  Keeping her on her regular school schedule helped keep her in stasis; I think. And keeping a schedule keeps me sane.  (I have changed Libby while on a Google Meet with my a group of my students.  No body parts were shown, yet I was mortified.)
      And then one morning after six weeks of mandated quarantining at home we realized the zombies had been attacking already. Rachael had to drive herself to the local clinic.  We thought she had a UTI.  Two weeks more and she was driving herself to the emergency room in the middle of the quarantine when NO ONE wants to be in an emergency room.  She was now through two rounds of antibiotics and was still in extremely progressive pain. 

     She was alone.  Libby and I were alone at home waiting for news. This was excruciating.   
     She had an initial emergency surgery to get what we now know was part of the infected diverticulae removed from her intestines.  Six days later she was taken in for a six plus hour longer surgery and over eight inches of her colon was removed. 
      Because of quarantine none of us could go and visit.  I wasn't given face to face directions on how to take care of her.  I was allowed to drop off clothes. I also included notes to her from Libby and I, as well as graduation announcements from her beloved students.  She’s now been home almost nine weeks.   

We have learned a lot since Rachael’s surgery including how much we need Rachael to be healthy.  And how much she was missed while in the hospital. We’ve learned to be gentle to each other. 

 We’ve learned how to close down our classes using remote learning.  (Although saying goodbye to this group of students may take several more years. These sweet birds were released before we were ready!)  

This illness and then surgery was a hard blow. And ugly blow, but like so many other things we’ve been able to move on.  We had to move forward, and I feel blessed to have the chance to keep going. 

Today is eight weeks. Eight weeks since her surgery and I am so very proud of how determined she is to regain her health.  Since her release from the hospital, she’s slowly begun walking loops around our block and has now returned to loops around the school track. We’ve been able to take Liberty to Cook Children’s to get her Baclofen pump refilled.  Only one parent allowed with the child in the hospital, so Rachael waited outside. Make several of her own doctor appointments and a feeding tube replacement in Amarillo for Libby. We were also able to get away for two quick nights- thank you!!  

So.  It’s been eight weeks for my own personal apocalypse. No zombies, just several wrenches thrown into our ever spinning world. It’s not the zombies that are so terrifying, the truth is it is the fear of the unknown that so many fear.  

I’ve learned that even in the most terrifying times, my faith is what holds me and gives me the strength to fight.  To keep moving.  Because truly, what is the other option?  Hide under the bed?  Nope.  Got to keep getting up and kicking ass everyday.  

      So apocalypse be damned. 

It's not A lot, but it is Enough (Or, Maslow was Hellaciously Right)

Lesson Three from the Big Q: Not a lot, but enough 

(Or Maslow was Right)

In my world today, Maslow is completely right.  

I could could go professional if worrying was a 

sport. I think many of could. We know it’s 

useless, but it’s something our brain can do 

while so much is out of our control. It’s 

difficult to be able to think through paying the 

bills when I know we are low on toilet paper, 

and I’ve gone to three stores over two days to 

visit the empty shelves. (We're good now.) I can't 

seem to grade when I'm worrying about my 

students and their well being. It is almost 

impossible to concentrate on lesson plans 

when it's time to change Libby’s pull up and 

give her meds while I’m worrying about whether 

or not the supplies for her feeding tube will arrive 

this week. (The supplies didn’t arrive yet, but we’re 

alright for awhile.) I can clean, paint and reorganize 

instead of dwelling on my worries about family 

during the Q.  I admit I spent two full days worrying 

about the amount of wipes we have for Libby.

  (We had three unopened wipe packages, not a lot, 

but we have enough.) 

How on earth can these students focus on any 

lessons when they aren’t sure about their parents’ 

jobs, if they can stay in their house since they 

are the only one working, what the status of their 

scholarship is, loss of time with their friends, not to 

mention the insanely important connection to their 

boy/girl friend.  There are also students who 

are sequestered in a house which is negative, 

toxic, or abusive.  These and so many other things 

are racing through my brain and theirs, meanwhile 

I’m supposed to be sharing a wealth of knowledge 

about poetry analysis and prepping them for an AP 

exam.   Yep.   That fits.  

Hand in hand with all of these worries there is 

the loss we are dealing with, loss of the life we 

had in so many ways. A new version of our lives

is on the way, but we do need to acknowledge 

this loss.

We know that it is terribly hard to think anything 

through when we are worried about our physiological 

status and our safety. Here is a real picture of me 

trying to follow a single thought and get something 

done just about every day during the Big Q. 

 Here’s part of my plan since I need a plan.  And

a list.  An actual LIST- geez.   Okay, three lists.

  (I know my over-functioning anxiety response

is in full swing here. Just let me have my lists.) 

And feel free to completely ignore these lists.

1. I started making a blessing list every morning 

of at least three things.   This is helping me focus 

on what is good and that helps open some space 

for everything else. It’s not a lot, but it is usually 

enough to help me focus a bit.

2. I also list UP TO three things I am worried about. 

Then I ask myself if I have any control over whatever 

I am worrying about. If the answer is no, then I do  

two things:  Ask myself if I can help in any way and 

ask my Higher Power to take that on for me.  This 

has allowed me to find some focus.  Not a lot, 

but enough.    

3. I also list three things I can do that day that 

will make me feel better about myself or my 

surroundings.   For me, this usually involves 

physical movement and sweat.  OR putting 

up the laundry or the dishes once they're clean.   

It doesn’t have to be a lot, because we are all 

in a prolonged stress response.  Think about 

the fight or flight response that continues for 

weeks and weeks due to uncertainty and fear 

of the unknown.  What positive steps we make 

for ourselves or our surroundings don’t have to 

be a lot as they are enough.    

https://www.vice.com/en_ca/article/n7jap8/allostatic-load-is-the-reason-you-feel-anxious-stressed-from-isolation?utm_campaign=sharebutton

You are doing an amazing job of coping in this 

changed world.  I cannot tell what is coming in our 

future, but I can tell you that we will be okay.  The

one thing I know is that there is plenty of love.  

WE can make sure there is enough LOVE to go 

around for ourselves, our family, our chosen tribes, 

and those who challenge us.    May not think it is a 

lot, but it is enough.

(Soon enough it will be time for action, but first 

let's stay safe during the Q and focus on loving.)

Lessons from the Big Q: Part Two

My own learning curve is more like being on a roller coaster these days.  This ride is a new one.No way to prepare myself for the ups, downs, and turns.  The speed is intermittent where we vacillate between breakneck speeds and crawling up hills that feel unsurmountable. The safety bar is loose and the person running the ride is WAY underpaid and overworked. At top speeds our ride is careening down the rails while a deluge of information, mostly helpful and overwhelming, is dumped into our speeding car. We are splattered at every turn with how to be better at this new world- how dangerous this new world is-how unpredictable this new world is. We are soaked with insecurity and disillusionment.   While riding through the loop-d-loops our hearts remind us that we have to protect the children in our cars. They are on this ride as well. Their end of year expectations are falling out as we go. We scramble to secure our precious cargo with our arm stretched across them as if protecting a passenger in a wreck. We can not even truly share the experience because we aren’t sharing this ride directly with our peers. We are all riding our own speeding, nauseatingly upside down course where screaming would be more natural if we weren’t staring at electronic screens.  This isn’t the roller coaster we signed up for, but it is the one we are on. And it’s hard. And WE are going to hang on...

As we first went into quarantine, I focussed all of my manic energy in getting things done.  All the things. All of them. We truly painted the outside of the house. The sheds. Replaced the kitchen floor.  Organized the sheds. Organized the closets. Rearranged the kitchen. Painted and cleaned the back patio. Closets were reconfigured.   The pantry was reorganized and now I can’t find all of the macaroni.   All the things were getting done because I couldn’t admit that I was devastated to not get to finish the year with my beloved students.   That was the hard thing. 

Yes, we can do hard things that help us realize our strength and potential. And yes, we can do hard things that suck and hurt and leave us feeling empty.  

BUT we don’t have to do all the hard things in the middle of the huge hard thing because of the unbelievable hard things that are still happening. And we don’t know how long this will continue.  There is no foreseeable end to this ride. 

We can do hard things if they need to be done. 

We can do hard things if they will make our lives better.

We can do hard things if they will not drain us completely.

We can do hard things if they will strengthen us.

Hell yes! We can do hard things, but that doesn’t mean that we have to do every hard thing immediately.  (Yes, Rachael I know. I could listen to you more.)

With this quarantine some feel the hard thing is getting up and out of bed. Getting dressed.  Eating responsibly. Moving intentionally. For some of us, we struggle, truly struggle, to even look at the work we need to do online, much less attend the digital meetings required of us.  The hard thing is different for each of us- just like a good lesson plan. That differentiation cannot be underestimated. Each of us is going through this pandemic with their own hard things.  WE need to discern what is accessible and fortifying for us. My hope is that we all conquer a few hard things by doing beautiful things.  

We can do hard things by doing one simple thing. For me, that means that I follow a work schedule which has kept me oriented during such unpredictable times.   One thing can be an email, a text, move clothes from washer to dryer. For some, that might be to go to bed before 3:00 a.m. Do one thing that makes you feel better- more human- more you. Do one thing then try another.  Like consider getting those clothes out of the dryer and hanging them up. One thing.  

Tomorrow, what is your one beautifully hard thing going to be?

Love you, Jasmin!

Lessons from the Big Q: Part One

I like to stay busy. This will come as no surprise to many of you. I like to feel productive and needed.  I abhor wasting time, so I plan ahead to circumvent said waste- making lists of what needs to be done and lists of lists. 

I’ve never been at home, as a child or an adult, for this long in my life.  I’ve always filled everyday with tasks. So, this isn’t new behavior. I like to do. 

For the first few years after Libby got sick I threw myself even further into teaching. I completed two master degrees within the first two years of her diagnosis. My pain and fear was kept at bay while I binged lots of food and even more research studies and teachery texts.  (I’ve also feared the day when Libby’s illness will require me full time and I’ll have to leave my classroom. So I teach like I’m on fire.)

Being at school was my haven. There I could teach, support, cajole, nag and love  my students, coworkers, campus. When it came time for Libby to start high school we made the painful decision to transfer Libby to my campus. Now my refuge became an even safer place for me, as Liberty was with me.  That was good. 

I have occupied myself for years, so I wouldn’t face the deluge of sad. The reality of the child I have now and the loss of the child we had.  I wouldn’t face the guilt of what I could’ve done or not done to keep Libby healthier. What I could’ve done or not done to be better for Mariah while she mourned for the sister she had and the different sister she has. Staying busy may have saved me in some ways as I’ve been able to continue the work I love and love the people I have.   

Until this quarantine I didn’t realize how much I have built myself around teaching. On being productive.  On giving and doing. Didn’t realize how important my time with students and peers is to keep my armor on.  So one thing I’ve had to answer is who am I if I’m not teaching?  

From the beginning of spring break to three weeks in I was a manic house painter, cleaner outer, organizer and stay busier. I was hiding again from the big sad.  I prefer to be outside when it’s warm.  I like working outside. Relish it.  I was especially busy.  Too busy.  

After spring week I set a schedule for myself and the house. Schedules keep me sane.  Instead of getting up at 4:00 am I get up around 5:00.  Got into the habit of being in my new “school” space by 8:00.   Rachael lovingly calls me a Labrador puppy: 100 miles per hour in all directions.   I know my business is annoying. 

I didn’t break down until four weeks into the Big Q. 

I cried for my students and for myself. It hurt so much because I rarely cry.   If I even actually let it all out I wouldn’t stop for an ugly long time.  Definitely a leak in my iron clad armor. And it’s okay. 

Gratefully, I get to see most of my students through video conferencing once a week.   I’m still teaching albeit differently.  Many things will be different after this quarantine is over. Including parts of myself.  

The morning after my “cry fest” and during my run I knew this amazing fact: I can be still.    And it’s okay.   It’s going to be okay if I’m not productive in the myriad of ways that I expect for myself.  

In my attempts at stillness I’m learning that we’re okay.  Libby is okay and mostly spectacular.   Mariah is wonderful and solid in her loving. We’re okay. 

And it’s going to be okay.  

And I can give myself permission to just be still.   I am giving myself that permission.   

Being at home for the first time in my life for this long is showing me that admitting the sad is there, with guilt as a side kick, doesn’t mean I’m embracing them.  It means that sad things happen and we’re ALLOWED to be sad and find lots of beautiful as well.  

Lesson one: be still, admit the ugly and embrace the blessings. 

I’m trying.   I’m a work in progress.  

Losing Christmas

   Like many others I am exhausted by the time the semester ends and the holiday break begins. Between reading the last set of research writing, finals, closing out the grades, planning for next semester and of course all things family and Feeding Tube replacements there is a full cart waiting and low fuel lights for energy and time. Amongst all of this are the ever annoying bills and adult responsibilities. Then add the commercial drive that makes this time of year even more stressful.   We need to go and go and go. Amongst all of this I have felt that I’ve lost the beauty that is. Christmas.   

Sea World was beautiful. 

  The Holidays have visited and left a wake of happiness in me. We have changed our focus in the last few years of trying to gift our beloved family members with time together and experiences.  For the most part we don’t need more stuff.  For us, if there is something we want we either get it, or save up and get it.   If there’s something we need, we get it as soon as it is fiscally possible. 

Just wanted to hug them big ol bears!

      I don’t need more things.  There are a few things I pray for, but they can’t be bought   What I need is time with the people I love. Time to watch a movie, eat, laugh, create, and explore.   Simply time.  Living with Liberty and her ever progressing diseases: Parkinson’s and Dystonia being the most vicious, have proven to me that our time together is precious. So very precious.  https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Movement-Symptoms/Dystonia.  

              When Rachael and I started talking about the special opportunity we had to take Liberty on a trip, we couldn’t wrap our minds around not having the kids, Jasmin and Xavier, with us.  

       So the idea of taking the family away over the holiday break was born.  Mentioned several times that this was our Christmas gifts which meant that I didn’t buy anything to really give.  (Little failure on my part since that included no little gifts for Liberty. If we decide in something similar next year I’ll make sure Libby gets a couple of gifts, and hopefully get to include Mariah.) 

       On the trip we went and did a lot.  We visited.  We laughed.  We ate great food and had great fun. It was Exactly what we needed to reconnect and rejuvenate.  Missed Mariah terribly, but we did get to share a meal Christmas Day in our local hospital’s cafeteria.   Food was good, but the company was awesome.  

Waiting to ride a roller coaster. 

      Who knows what next year holds.   Except I hope and pray for more time together.  Grateful that I was able to let Christmas go so that I could see the joy in it that I needed.  

**Soon I’ll share my version of our brief time at the River Walk.  ;)

Share your light.  

Ileana 

Don’t agree with everything from these links, but there are some great ideas here to share.  

https://freefrombroke.com/what-about-a-gift-less-christmas/

https://homeschoolhideout.com/why-we-arent-giving-gifts-to-our-kids-this-christmas/   

https://www.cbc.ca/amp/1.5395822

Holiday at the ER

     We had a plan.  I had a plan.  We made the decision to make a trip our Christmas gift to our family.   We contacted  our first travel agent.  We chose San Antonio for our little family get away.  The river walk over the holidays and some sea animals are what we have in order.  We paid for the hotel rooms and tickets to Seaworld, got scripts early, doctor appointments completed, supplies delivered, and cars washed. I’ve prayed for Grandma Linda’s ongoing wound care to behave.  Shared possible itinerary with fam and embraced the excitement. 

      Due to the trip, we didn’t buy gifts for each other.  We were possibly going to pick something out while on the trip.  We were to have a little meal with Grandma for Christmas Eve, but she wasn’t feeling well possibly after adjustments to antibiotics. So, we didn’t Christmas Eve.  For Christmas we were going to meet Mariah and Derrick for a lovely meal. Reservations cancelled.  Didn’t think this minimal gifting part through very well. 

      Yesterday evening, I flushed her tube in preparation for her shower and witnessed the icky mess on her belly.  Yep.  Her tube is dislodged.   I taped the bejesus out of it, bathed the kid and started the necessary call to our doc on Christmas Eve.  Taped the tube further and put the kid to bed.  

      Libby and I checked into the ER Christmas morning at 8:15.   Remember how we were given the go ahead to have standing orders for feeding tube replacement?   Well Rachael took Libby to her primary care doctor Monday, so I could go to the Wound Care doc with Linda at the same time. The standing orders were requested this Monday.  It’s Wednesday, a holiday, so of course the orders aren’t in and approved yet.  Let the waiting begin.  

      So here we sit. Christmas morning at the ER. Trying not to embrace the guilt of taking other people from their family time today.  Trying not to focus on ugly negativity that could envelop me.  Trying not to think about the possible loss of this much needed trip. Trying not to be sad that it’s Christmas and there are no gifts for this sweet baby of mine.   Trying not to admit that I’ve messed this holiday up with these plans of mine.  Silly little plans.  

        We’re here waiting for the on-call radiologist to arrive, interrupting their precious Christmas Day.  Waiting to be able to give my kid the food and meds she’s having to miss just in case they end up having  to use anesthesia.  Level of suck-age pretty high.  And if I’m to be honest, this is all just so sad.  So sad.   Holidays are hard.   This one is so sad.  

         Right about now I could believe the universe is against us.  That continuing to fight for this damn tube isn’t worth it.   (She’s holding her weight and up two pounds as of check in at Cook Children’s on December 11.)  I really think that giving up is the easiest thing.  Good thing it’s not an option.  

        It’s times like this when I feel like banging my head and heart against the universal wall that I know the light is coming.  The light always comes to remind me of the immense love that surrounds me at all times.   It’s times like these that I know that even though right now our circumstances are so ick-worthy, I know that my God has a plan for me.   Plan for us.  Plan for this moment.  For this day.  For this precious life I’m sharing.   I just have to acknowledge the sad and turn on the Light.   Turn on the lights! 

Pic from Monday evening.   

Now I’m going to pray, cross my fingers and toes and  knock on wood to get the luck/blessings needed to get this tube in, Linda well enough, and everyone on the road tomorrow morning.  

Fa la la la la ......Merry Holidays to all of you.   And if you’re struggling with the Sad, I’ll help turn back on that Light.  Much love

ileana