Tuesday, September 21, 2021

“I know how this story ends”

Happy Fall!


If possible, start with this song: 
https://music.apple.com/us/album/his-eye-is-on-the-sparrow/545769471?i=545769542

It has now been a month for our mighty little one to be on Palliative Care, and what a month it’s been. It is also the first of a new school year.  Our new caretaker is doing a great job taking care of of Libby in our home. (It’s been a transition for me being that far away from Libby, but she has been comfortable in her own space.


We have had the chance for many of our loved ones to come and spend some time with Liberty.  It makes my heart smile. Forever grateful for all the people who share their love with her.


At Happy Days


And two of our bonus daughters...

Libby had just been smiling.  


And she made it about 15:00 at the Blank Spaces Art Exhibit  at our Snack Shak warehouse before she started crying and whimpering.  


Her face says it. She was done so soon.  

I have been sleeping with Libby for quite awhile.  Sometimes it’s like dozing on a very stiff and fidgety roller coaster. 


Kittie has been her baby of choice for the last few months. 



About a month ago and after a day where my heart was weighed down, I was given the most beautiful dream.  The kind of dream that you try so hard to get back to when you are pulled away to consciousness.  


It was just as my alarm was going off that I saw Terry, Rachael’s father, walking with my Grandmother. Now, you have to know that Terry is Rachael’s father, but to me he was my Dad as well.  He taught me that I could safely love and trust a man. He was and is one of the very best men I have ever known.  


And, of course, my Grandmother Geneva, is the greatest influence in my life.   I am here because she told me I was worthy. I am here because she pushed and supported me, then  taught me how to weather the storms. I am here today because she loved me so fiercely that I stand tall when I really want to curl into the tiniest ball.  


They have both left this world years ago creating huge holes in our lives. 


Wearing our color, Tudor green, she was holding onto his arm and he was patting her hand. There is water present, but I am not sure how.  It should have been cold, but it wasn’t. I could see tiny birds and little sounds and see very little; there was also music in the background. I wish I could have been clearer or stayed longer in that dream.  


They are walking towards me with smooth, smiling faces and straight backs.  Terry is leaning down to listen to my gentle spoken 4’9” Grandma.  He says, “Now Geva, she is coming, but it’s not quite time yet.” 


My Grandma smiles up to him and responds, “We’ve waited a long while, her body is tired, and we are ready.” And at that they glance behind them and that is when I see the multitude of people walking behind them: smiling.They are there: the loved ones and unknown people who have already left us.  They are there, preparing a place for our girl.  


 I know, more than I have ever known, that there is a homecoming being prepared.  Though we may not be ready, never will be ready, but there is an abundance of love awaiting. They are preparing a place where she will no longer have pain and will be enveloped by love. 


It will break my heart, but it is an immense comfort to know who will be welcoming her home.


Now, we are not going to move in to SAD. I’m not sharing this because I believe the time is very short. I can’t know anything if the sort. This dream eased my tired heart and gave me a better perspective.

I know I will have days, hours, minutes of anger and sadness, but still I know. I will say all the angry words And still, I know. 

Meanwhile I will keep making plans because “I know the plans” that are in place for her and the “Victory” that awaits her and all who live with progressive degenerative diseases.


You are loved.



https://music.apple.com/us/album/see-a-victory/1490613106?i=1490613249



Sunday, August 22, 2021

The Next Best Choice

Happy Back to School and a new normal!

We have had some drastic changes in the last couple of months and with each change, we continue to try to make the next right choice.



Libby is staying at home and an amazing new caregiver is coming to our home to take care of her.  Our previous caretakers have had major life changes, and we will miss seeing Mariah and Jennifer throughout the week. The search began. 

We couldn't find a caretaker that could watch Libby in Amarillo, and it just worked out that this caretaker would drive to Happy.   She is wonderful!  Not getting Libby into and out of the house, the car, and back again is also saving some of her energy.  The only caveat is that Libby has always driven back and forth to Amarillo with me. She has been about 10 to 15 minutes away from me.  Now, she is 36 miles away.  We are adjusting- separation anxiety is real.

Her body has changed in the last four months.  May 4th Libby bit her finger during a spastic episode.  (She continues to wear her safety mitten for her protection.)  By the end of May, Liberty was beginning to cry- a lot. She has been a happy and mostly content girl, so this felt like it was coming out of nowhere.  The crying came and stayed.  Some days it was for less than an hour.  Somedays it was for several hours: almost always in the evening. 

At the beginning of June, I took her to our local clinic to get all the regular tests run. She had a full body check and there was nothing.  She can't tell me what is wrong.  She can't tell me where it hurts. I was so worried that she was hurting and I couldn't fix it.  The tests were all normal; on paper she is healthy. We started trying to find what combinations would help and STOP the crying.  

We believe she has been Sundowning.  This is something common with Parkinsonism's. 

In July, we went on vacation and the wailing continued.  She has been eating more while we are at home, but I knew she was still losing weight.  Her body is burning up all the calories we can get in her due to her spasticity.  She moves all night long.  She moves all day as well. Burning everything she consumes. She also seemed to be getting so many bruises.  So many. Those who are malnourished tend to bruise easily.  

We did a lot this summer and for that, I am very grateful.

July 27, my mom passed on.

At my annual doctor appointment, July 28, I fell apart on the primary care doctor Libby and I share. I dumped the list of what I thought was happening: weight loss, period irregular, bruising and more.  He told me it may be time for Palliative Care for Libby.  I had never heard of it. He put orders in place for the initial screening.    

On August 2nd, we drove to Ft. Worth to get her Baclofen pump refilled and returned on August 3rd.  She is down almost ten pounds.  Devastating.  The Physician's Assistant we see in Ft. Worth carefully warned me that this will continue.    I said ugly words to God.  Many of them.

On August 4th, Libby got a new feeding tube as prescheduled.  That afternoon Libby had a seizure during our nap time.  It's been almost ten years since she has had one.  Or has it?  She could have had others that I missed.  Seizures are the worst.  (Could it have been seizure activity that brought on the spastic fit where she bit her finger?)   

We started school and I began planning and simplifying where we can.  We wIll be careful with how many times we take her out and about with us.  Although part of me wants to take her everywhere every day, that's not what her body is needing.  We need her to be calm and happy. Both Rachael and I need to teach.  It is such a part of who we are.  It is wonderful to be back in school and have this time with our new loves. Working with my students and peers is a gift.  I will continue teaching until I can't; making the next best choice for all of us.   


So, Liberty is officially in palliative care.  We are focusing on keeping her calm and comfortable. We have more people coming into the house checking on her and adjusting her meds.  We have no idea of a timeline, and I sure wish God would let me get a peek of it.  


When you turn the corner coming home and see this car it is surreal.  And painful.  And scary.  Yet I am
So grateful for the help. We are not choosing Hospice care at this time, but seeing that car made my heart turn over. 

Libby is 24.  She got her diagnosis at the age of 12.  We are at the halfway mark where she was healthy for 12 and fighting for over 12 years.  We had an initial estimate of four years, so these have been bonus years past what the doctors predicted. 

 Our mighty girl's body is tired and rightfully so. We are blessed in that she is waving the red flag at us and we have seen it.  Having this time to prepare the people we love is a gift.  A great gift.   We will continue to try the different meds and dosages to keep her comfortable.  Continue making the next best choice for her.  

We are not going to live in the world of sad. For everyone reading this, please don't focus on the sad.  I may want to hide under the bed for a while, but I can't stay there.  Focus on the joy and triumph of every day.  We have this bonus time to relish.  

 You are important.  You have each blessed us.  

You are loved and are love: Look More Like Love  


Other news, Liberty's chair finally came in after two months of waiting. 



Thursday, July 15, 2021

Making Joy

Happy July 15! 


Today is our 6th Legal-Anniversary! Where we ran to New Mexico and got the paperwork done  after they passed the Marriage Equality Act in that state.  (We had a ceremony over 20 years ago.) 





I am grateful for the way we have learned and grown together through circumstances that are emotionally painful and daunting.  We’ve kept going even when my heart has broken and all I wanted to do was run.  We’ve kept going.  It’s not like relationships are easy, but being Special Needs parents makes it even tougher.  Loving is easy, but staying together can be challenging for many. 


We have a LOT on our shoulders as many couples do, and we have Liberty.  Full time all the time. We have Liberty.   We’ve learned to find ways to hang on. When I am overwhelmed and tired to the core, I look for joy.   

 There is always joy to find. If I can’t find it, I make my own. Everyday I make sure to sing some little ditty.   I just sing. It makes me happy.   It pulls me up.  Another thing I’ve continued to embrace is dancing.  I bust a move at least once a day.   Randomly.   Probably embarrassingly.    Doesn’t matter. There is joy for me and I will claim it.  

Last night we had the beautiful chance to dance at the St. Andrew’s Trucking where they have food trucks, a great band and lots of spiritual community.  I am blessed by this community and how they have open their hearts for us. 



 We danced.   Wonderfully, Rachael danced with me.  All
by ourselves.   We got to dance! Some would be embarrassed.  Others would feel a spectacle.   I don’t anymore.  I HAVE to take those moments when I can.

  You never know when you’ll get another chance to dance. (It’s been over two YEARS since we had a night out without Libby.)  You might think I’m complaining,  but I’m not.  It is exactly what it is.  We don’t have a lot of caregivers available with time to spare, but we’re working on finding and hiring more. 


We have chosen to include family in our vacations and get always. Time is precious and there are no regrets.  Over the years, we have culled out evenings after Libby is in bed.  We just need to find a way to have some get away time together.  


With the addition of Libby’s evening cry-fests, we’re really going to need little breaks.  We have found a tincture that is helping to calm her and we have new schedule that is helping.  

So, today we are going to load up, have a meal, and go grocery shopping.   Ya know that grown up life. 

Keep looking for joy.  And when you can’t see it make your own.  If you can’t then you’re welcome to join me on the dance floor.   

There is always joy to be embraced.   



Wednesday, June 30, 2021

Masterpiece


Hello wonderful people,
Most important news is that we have found a tincture that is helping Libby stay more calm and rooted.  For the most part she’s made it through the last few days with limited wailing. This is the best news. 


I have a super power.  It’s not even a secret.   It’s not anything that will help others.   It’s really not healthy. 

I have a Bruce Banner level need to second guess almost every conversation  I have.  I play the conversations over in my head and know I was too open. Too honest.  Too awkward. I have done it for as long as I can remember.  Once I am comfortable with someone I relax and my replay super power gets much weaker, but it’s still there.  

That’s just one of the flaws I have. One of many.  And that’s okay.  It’s something I recognize as human and keep moving forward. 
We have some flaws. Even the greatest paintings have flaws. Check out this cool article I found: https://brightside.me/wonder-curiosities/8-art-masterpieces-with-hidden-imperfections-352960/amp/
We all have flaws and differences, but that’s okay. They make us more beautiful.  

One area that is NOT a flaw is the spectacular sexual spectrum in humans: LGBTQIA and others not identifying yet. 

We are all loved. Loved and accepted for the perfectly imperfect people we are.  You are a masterpiece as you are.  You are loved as you are.  Flaws and second guessing aside. You are loved.  

Please do not ever allow yourself to consider your sexual identity as a flaw.  Do not allow other people or society to tell you it is a flaw.  I think our sexual identity is part of our own super powers.  

The God of my understanding loves us and wants us to love and be loved.  The God of my understanding knows each of us, knows you, and considers EACH one of us to be a masterpiece.   We may have flaws, but this isn’t one of them. 

And if you find yourself not being accepted for who you are, I will accept you. And I know many others that will as well. 
For so many people, sexual identity has stigma and shame.  There shouldn’t be stigma or shame where love should exist. 

You are a David level  masterpiece and you are loved.  

Please listen to this if you are even in doubt: https://music.apple.com/us/album/masterpiece/1174317441?i=1174318362.


Happy end of Pride Month 2021.  




Monday, June 21, 2021

Ubuntu

“Hello!  I love you.” 

Summer is a special gift every year.  This year I am especially grateful. Having more opportunities to be with my community is a blessing I have yearned for, plus time to be at home and revel in the rest. 

 I needed to share this with you all before I offer a Libby update.  Now, more than ever we need Ubuntu. I certainly need it.  I AM able to continue on because We are.   

Please play this song: 
“Crowded Table”

Opening prayer/thoughts:
Our Loving God, 
You have taught us to love our neighbors as ourselves. Help us to do that within our church, familial, and neighborhood communities.  Help us to understand the struggles and problems our fellow people are going through and guide us to find ways to help them in the ways they need it most.  Help us to love others regardless of our differences- because of our differences. Help us to see one another as the divinely created and beloved spirits we are. Help each of us to help others grow and thrive as we wish to grow and thrive.  Help us to love our community as we love you.  Gratefully in your grace, we pray, Amen.  




Some days we are the matriarch and some days we’re Elvis.  Sometimes we maybe the crocodile hunting and other days we’re Sully. Having the support and strength of our extra family is vital. May you have the awareness of Ubuntu as you strengthen your community through serving and accepting of service. 
I am ever so grateful for our community.  
****

We’ve had some fun adventures including Libby and I took on grocery shopping and the Mall!  We’ve enjoyed the Wednesday evening gatherings at church and a scholarship race.  I think she’s enjoying the time at home and getting to go run around as well.   And all the movies we’re watching.  Yay for summer. 

(I am continuing to share our journey with Liberty and her illnesses. Please don’t be sad.” 
Libby has started some thing new: crying and fussing for hours every evening.  Every. Evening.  She cries. This is not a kid who cries very often until recently.  This is week four for the beginning of the cry hours around 6:00.  
I’ve rocked her in her little chair.  Sat with her perfectly still. Rocked her outside.  Played her favorite music. Held her in my lap.  Given her extra shower.  Rubbed her legs and feet. Etc. and she still cries.  

I took her to the local Clinic and we did full blood panel and urinalysis along with a abdominal Sonogram.  Nothing abnormal. 

We’re now trying a more stringent evening routine involving repetitive relaxing music.  Also added an additional relaxant to our nighttime routine.   So far, there is not a rhyme nor reason that I can find. 

I know we will figure it out.  Just hope I don’t lose my mind before then.  ;). Bless Rachael who is having to tag in a lot more when Libby is wailing.    I believe this is part of our learning curve and we will figure it out.  I know we don’t want Libby to be hurting or unhappy EVER.   Ever.  We choose quality for her life at all times.  I have faith that we will find the magic whatever to make her return to comfort and happiness.  

My mom has been in ICU in Garland for five days.  She is on a ventilator. There are multiple systems not working proficiently.  Her body is trying in her own way.   Prayers and good vibes appreciated.  Prayers for my brother, David and his beautiful wife, Mirtha.

--Closing Blessing:
Our loving teacher, 
Crowd our tables and guide us as we welcome more in.  
Show us how to see one another as the vitally important pieces in our community we are.  Protect us from anything that could slow our growth as a community.  Allow us to be uplifted as we grow and strengthened through good works in your name.  When we are weary may we be sustained by the faith surrounding us. Remind us that I CAN because WE Can.  Remind us that we ARE because You ARE.   We ARE because I am.  Help us to love our community as we love you.  In your grace, we pray, Amen.

Sunday, May 30, 2021

God’s Participation Medal

We make plans and God laughs.  Belly laughs.  Please
Don’t take this to be sad; we are learning and growing as we go.  I am always grateful to be able to mother and teach.  Always.  


The Intro:
We finished. We finished the school year.  We crafted beautiful relationships with our students and peers.  We navigated teaching with a mask, cleaning between every class, virtual learning, changes in state tests, taking state and national tests, many, many students and staff being quarantined, and a move across campus to a new classroom. 
We finished and I am  a worn out dish rag during canning season.  We finished and yet so much is still unknown. Living in the unknown is okay.    

Everyday seems to bring new challenges and new lessons.  I learned that working on the relationships with my students and peers is the most precious part of my job.  I also learned that all of the Pine Sol and Fabuloso was worth it.  I don’t feel like I was half the teacher I normally am this year, yet I pray my students felt safe, loved, and heard.  They’re going to be okay. 
Finger Update:
Libby’s finger is still healing from her venture into cannibalism (I know, that’s not appropriate, but funny).  She’s wearing the Mit of Shame everyday to protect her left hand.  

That giant white pillowy thing is her Mit.  It’s not perfect, but it’s working.  Her hand is  going to be okay. 

Van Update: 
My lovely Toyota van has been totaled.  I signed the release papers Wednesday, cleaned it out, and said farewell.   The front end damage was too extensive for insurance to fix.  So, it is gone.  It’s going to be okay, not the van, but we will be okay. 

Libby’s rotating seat lift is also totaled.  I cannot move the seat with her into a new vehicle for safety reasons- even though the seat itself wasn’t harmed.    It’s been in a wreck.   That’s a huge loss and getting it replaced is close to $10,000.   All the insurance companies involved are not sure they will pay for the replacement.   It’s going to be okay.  

There is also a deficit of appropriate vehicles for us to buy.   Finding a van or SUV that can accommodate Liberty’s very specific needs is difficult.  She needs a door that will open very wide or is a slide in.  Her body doesn’t always bend and  her legs may not fold while getting in the vehicle.   (I’ve been doing a modified version of the “Cop Dip” to get her upper half into our rental which does work, but it’s hard on her body and hurts.)   
The rental goes back tomorrow after over three weeks.  It’s going to be okay.  

I struggle with letting go and letting God be in control. Often,  I think I have a plan.   A big Plan. I’ve gone through all the what if’s and possible road blocks.  I like to think through the ifs and buts and oh no’s of any change.  I create a  plan and begin to believe in how it will work. I made a plan.   I had a plan and God laughed.  A career changing plan. 
I prayed since last year to be ready to leave the classroom and move up into curriculum work and leadership.  I prayed to make me feel ready.   I prayed to be ready for challenges.  After 18 years teaching, I was ready.  I submitted the necessary paperwork and was in the race,  but it didn’t happen.   

I was passed over.  Not hired.  Not enough. Just not.  

And God laughed- gently. I don’t carry fear around as my faith allows me to let that go.   But the bitterness and hurt I gained after the rejection, has been a Military size ruck sack through my days.   All of the insecure doubts were dangerous hitchhikers to my  daily life. 
What could I do better? 
What am I not doing?
What do I need to learn and change?  
What did the other person do  better than what I do?
Why not me?

Passed over. 
Not chosen. 
Not enough.  

Finally, I went back into prayer as bitterness is a poison.  After a timely conversation with two amazing educators who are also people of faith, I was able to find some perspective. 

I don’t think we’re supposed to try to make these big plans without taking our ideas to our God.    I wanted a change and move up.  I wanted a break from teaching because I am tired.    I wanted a new challenge.  I wanted. 

God has plans for me.  There are other races I’m supposed to be in.  This was my third attempt to move out of the classroom.  Don’t think that’s the plan.  I’ve come to peace with it for now.   I learned more about myself and how I lead through action and not words.  No matter, I am blessed to teach and serve students through my current position and I know great things are coming every day.  

And I have the swanky participation medal from my Higher Power.   We make plans and God just laughs as they have plan in place for us that we can’t see.   So we put our name in the race that we want to win in and God gives us the participation medal to acknowledge our growth, not our follies.  Winning isn’t about the big medal; it’s about the growing in between.   I’ll take this lesson and carry on, placing this new trophy in my shelf.  God laughs.  We make plans, and we GROW.


Be blessed and know that you are a masterpiece; a single piece made from a Master. 

Thursday, May 13, 2021

WARNING! Construction Work Ahead


      It’s the end of a beautifully stressful school year where we’ve been in-person teaching the entire time.   We’ve worn our masks, cleaned the tables, and had books in a waiting area between students sharing with other students. All to keep our students safe.  Knowing that I would be going from our school to pick up Libby has meant being very careful by using sanitizer, masks, and limited what I take home and what comes from the house to my classroom.  All to keep Libby safe. We’ve changed so much of our pedagogy and class space in an effort to keep all of our students and family members safe. This entire year has been a blind growth curve in the middle of an acid rain storm while wearing a mask and wielding a spray bottle of Pine Sol like a sword. 

And we have survived and dare I say, thrived.  

Last week  I shared about Libby’s biting prowess and the huge teeth marks and infection she gained. Here is the catch up time line: 
Monday-5/4- Libby bit her right index finger so hard her whole hand swelled up.  
5/5- Her finger and hand are swollen and red. We saw a doctor and began antibiotics.  
5/6- Her finger and hand are slightly better- We celebrated Cinco de Mayo and saw friends at church. 
5/7- Finger and had are worse. Red, inflamed, and puss filled.  Back to doc for more antibiotics. 
5/8- Red and angry infection in finger, but finger is better. 
##Pictures of the finger at the very end of this post to protect those who are squeamish. 


And then...
That Friday morning we were in a wreck.  It was an almost normal Friday as I had many water jugs to be filled and extra cleaning stuff for my classroom. My school bag, lunch bag and Liberty’s go bag we’re loaded as well. 
A lady, my new friend, ran a stop sign and hit us. This very sweet and apologetic woman was so upset about the fender bender with our van; even more so after she saw Libby in the van. 
  
Libby was with me, and we got into a wreck. 

I couldn’t open my door or the windows.  Libby didn’t move at all. 
Libby. Was. With. Me. There were water jugs and parts of our food, her pill container, and daily supplies were everywhere. 
 Libby was with me. She was with me in her chair lift seat with her harness and seatbelt on. She was also propped up on her Star Wars pillows as normal, plus an extra one for her very iced and wrapped left hand.  

After the collision,  on Liberty’s chair move at all.  Her pillow was in place.  Her hand was exactly where I had propped it up. Everything else was in the back under the wheelchair, under seats, across the front passers seat.  Stuff was everywhere, but nothing in Liberty’s seat had moved.  

When I finally crawled across to get out and check on her, she smiled a little and that was it.   No surprise, fear, or painful upset to be shared. Apraxia is a gift at this moment.  I did a body check and she was okay.   She was okay.  And I had hard waves of sobbing.   Ugly crying.  She.Is.Okay. 

https://youtu.be/8-vZlrBYLSU truly a “Broken Road”....

While we exchanged insurance and informed the police officer what happened, the wonderful officer gave me some salient advice. I need to get something on Libby’s chair or body that states that she is nonverbal, full assist, and has her medical information.  Her words echoed, “If you had been incapacitated, how would we know that she cannot respond, stand, or move on her own?”  

Well shit.  Sirens were going off in my head.  If something happens to me, first responders HAVE to know the hardware in her body and how to help her.  Shit.  

Humbled and scared. I am often humbled, but not often scared.  I place my fear at the feet of my faith, so real fear doesn’t stay with me long.   But I was scared.   If I had not swerved the other car would have hit straight into the driver’s side door.   It could have been much worse.  This could have been a “road ends” sign, instead it was “construction ahead” and “slow down”. 

Grateful that Jennifer and Caebhin for coming to get Libby.  
Thankful that the Tow truck driver gave me a lift. Ever so grateful that Rachael was able to leave school and meet me at the Collision Body Shop and let me son. 

 The last two weeks have been a treacherous drive on a rocky dirt road, with lots of construction work going on.   I was still reeling from this new road where Liberty biting her finger is a truly dangerous possibility. I didn’t realize we were emotionally in the middle of of construction zone.  Growth and understanding take work, so I better get a hard hat to match Libby’s protective hand  mitt.  That’s where I’m at as I admit that it is truly “a dangerous business...going out [my] front door” (The Hobbit.)   Dangerous it is. 
We were blessed- not lucky.   Blessed.  And I am humbled and grateful. 

Some links for getting the necessary information on the seat belt, wheel chair, or even wrist of your loved one.  
Or 

And 



Gird your loins if your squeamish...


Day 3 after bite.
Day 8 her very soft “cone of shame” came in.  She’s ready for some lightweight boxing now. 


Day 10 that bruising is real!  


Libby’s finger continues to heal.   It’s coming along slowly, but steadily coming along.   The van is at the repair shop and we have a cute little rental.   And we’re okay.  We are okay, and the road work continues all around us.  
Be safe and be blessed.   
Ileana