Four Weeks

Happy end of February,

As of today, it will be four weeks.   Four weeks of feeling everything and yet nothing.  Four weeks of waking up and forgetting and then remembering.  Four weeks of missing Liberty and yearning to love on her one more time.  Four weeks of trying to understand what I'm supposed to do with all my free time. What am I supposed to be doing?  Loving and caring for Libby kept me very busy.  Now, I have a hole in my time. 

I have this recurring deep ache in my torso.  It feels as if there is a literal hole that burns and hurts.  Then I can't breathe. My throat clenches closed. I can't think past the unadulterated missing of her. Finally, the tears come. Eventually, I can swallow again. I'm calling them Liberty attacks. Like all things Liberty, I cannot predict when they will hit.

And it's okay.  It's good to feel the hard emotions too.  I spend a lot of time being numb which is beginning to fade- gracefully. My brain isn't holding some thoughts as long as it used to, grief fog is real for me.  I am blessed by the people I work and worship with as they continue to reach out to me and offer hugs and understanding.   It helps.  Not sure how to carry this grief, so I'll embrace all the support I can.  

I do not want to become stuck in the sad cycle.  I don't want to see my laugh lines become grief lines. Been holding my breath for many years, pleading to keep Libby here and healthy.  Think I need to find ways to love the life I shared with Libby and to continue to love life now. 

In the past, I have said "I am broken" after whatever painful event occurred, but I don't really think we become broken.  I think that we bend and bend and bend like a tree. And sometimes we may feel broken.

 

 

We, meaning me, tend to let the daily pains and/or struggles build up until we have to either bend or break.  As yoga and life have taught me, I get stronger when I bend.  Like the trees in the Texas Panhandle, we bend to the winds. When I think of the many ways I am blessed to be able to do so I have a small idea of the grace we are offered.    

Thanks to a student who told me about this cool kind of fixing pottery: Kintsugi.  There is a cool story attached to this method of filing in and then admiring the preciously scared broken pottery have.  The Japanese have found a way to fill in the broken parts of the pottery with gold, which is much like the grace offered to us.  You see, we may bend and sometimes break,  but with whatever faith we embrace, our scars can become beautiful opportunities to grow. https://www.lifegate.com/kintsugi is a cool site to check out.  This time of missing Libby makes me feel like I've been stripped of the powerful love we shared.  I need the reminder that she is with us- with me.  Taking Sparkles and Kitty out helps a lot.  These scars of missing her will be ones I wear with honor.  They will become what I showcase.   

While healing, I think it's a good idea to let life love us.

A song to help soothe https://youtu.be/nKBkdp_gCCs

Two weeks

Not sure that there any words to share how grateful I am to everyone who has prayed, meditated, saged, texted, called, emailed, came by, and attended the Celebration of Life memorial.  We are truly being held in the most amazing and needed embrace through many years, but especially in the last month.  

If you didn’t get it, here is the link that has the slideshow that Rachael put together, the playlist, and the obituary. 

https://docs.google.com/presentation/d/1psESxIHLfry3UPEagpR07Lz2SzTc_idT93UdUT2EdDA/edit

Truly.  Thank you. The last month was hard in an Sisyphean way.  

I wanted to share the last 26  hours with our girl.  This is not meant to be sad; it is shared with an open compassionate heart. 

Saturday, January 29 was a long, sad, and beautiful day.   We had so many people come to the house to sit with us and love on Libby.  She was able to FaceTime with my brother and one of her best friends in Happy. My beautiful cousin and her awesome husband came from Tulsa.  We spent the day eating, laughing, and some crying.  

This was day 11 of no eating and barely any drinking.  She was not really responding at all.  Her heart was still pumping, but she was leaving us. 

We all told her it was okay to go. 

Our night was restless.  Instead of every two hours, I woke up about every hour.  I’d wake up nervously, hand in her belly counting her breaths.  Counting and knowing how close to the end she was.  Rachael gave meds at 2:00 am.  At 4:00 she was struggling more to breathe.  This time her body was completely lax. 

At 6:00 am I have her meds and snuggled in for a little bit, then got up to start the day.  I’d been working out on the kitchen, quieter in there, and going in the check on her every ten to fifteen minutes.  I went in to check on her at about 6:45.  She was noticeably gasping in little breaths. I knew it was time and I couldn’t move.  I wanted to give her my breaths.   Inside I was screaming, “stay with me” and “don’t go” even though I knew it was time.  I muttered something about the promises we had made that she would let me know that she THERE and okay and  the promises our God has made to us.  

7:00 I went to get Rachael and gratefully she made it into the room for the last few breaths. 

We moved her into the living room onto her hospice bed.  It’s hard to explain how the emotions pours out and yet there was nothing.  Couldn’t breathe.  Couldn’t stop loving on her. Kept messing with the blankets and  other such bullshit. 

Notified our hospice team and waited.  

Her official passing is 9:00am. It took our wonderful nurse a while to get to Happy and get the paperwork started.  Our Spiritual Care Deacon/guru Mildred guided us wonderfully.    Cannot say enough about our hospice team!!

Most importantly for me was the cleansing and anointing that needed to be done. There is a beauty in the familial cleansing of our loved ones.  In the way many women have come together to prepare their recently departed loves. 

 With our sweet team and Grandma Linda, we sang her songs.  We cleansed her body.  We prayed to rejoice in her accomplishments.  We prayed to mourn the children, and love, and life she wouldn’t have in the mortal life.  We rejoiced for the love and accomplishments she will have in this next existence.  I let her go with my broken heart and full of faith in the promises given by the God of my understanding.  We sang on.  

We anointed her with oil that I have that smells like the mountains she will be flying over and beyond.  

We dressed her in her bright red shirt that had the Statue of Liberty on it and said “be a lady” because hell yes. 

It’s probably crazy, but I couldn’t stand anyone else lifting her.  I did it.  I tucked her into her blankets/sheets as I couldn’t fathom a man touching her.   My mommy powers were in full form. 

I helped place her in the van. 

I would have chased that van all the way to Canyon and demanded that she be given back to me, but it couldn’t happen.  She had already left.  

After the van pulled away, there was a group of birds flying over and I said, “Hi Libby.” And went inside.   

Rachael moved the hospice bed out of the living room and we took a few long deep breaths.  

https://music.apple.com/us/album/broken-horses/1577159552?i=1577159680   “Only broken horses know to run”   I can see her galloping away…..

The handwritten “I love you guys” is one of the last good samples of Libby’s writing.  And it’s true; she loves you all. 

Be blessed and know we all have the most special angel pushing us forward. “On and On”….

Libby’s Willow

We have bought many trees to add to our property beside the house.   Many trees.  Trees of all kinds. Whole trees- saplings- seeds- all of it.   We did research and planted another and another variety.  None of them really took.  

Until after her diagnosis in 2012, Liberty asked for a willow tree.  She wanted it because of Harry Potter’s “Womping Willow”  not because willows are my very, very favorite trees.  

This tree grew.  And grew. Flourished.  Truly flourished.  We would sing concerts to the sister tree during the summers. 

We adorned Her with fairy lights that Libby loved.  Strand after strand after strand.   Until someone cut several of the light strands, it was a gift to drive home after school and Libby would be giggly over all the fairies living in her tree.  

So, we built a fence to protect the tree and the fairies. The willow with the fence. 

In the spring of 2021, I noticed that her tree was not leafing the way it had in the past.  I refused to talk about the decline of Libby’s tree with Rachael.   Refused.   I didn’t know why then.  

Now I know that the tree was telling me what my heart couldn’t handle.  That damn tree was still hanging on this fall with only a few branches clinging with any leaves to offer to the fall.  

Just like her tree, Liberty is stubbornly hanging on.  Today, January 28, is the tenth day that Libby has refused food and water.   Her beautiful heart has been at race pace for days now.   She is beyond tiny.   She is no longer responding most of the time.  Her body is done- her heart isn’t.   

She’s still pushing against the wind. 

https://music.apple.com/us/album/against-the-wind/1440879556?i=1440880091

We’ve told her it’s okay.  We will be okay.  Blessedly, so many have come to tell her she can go.  Yet, she’s holding steady.   Her Grandma Geva and Papa are waiting.   Damn these stubborn genes.  

This is terrible.  Grateful for the time.  For me, this level of decline has helped me reconcile letting her go.   She has earned her Liberty ten fold.   

In God’s Time and Libby’s Stubborness

Going through this hospice process with Liberty is beautiful and yet terribly hard. It’s a lovely chance to cover her in love, and yet, it’s hard. Watching her body decline is terribly sad.   But I prayed Libby into this world, and I will continue praying her out of it.  

We met with our clergy last weekend got  her Celebration of Life and Home going planned.  So grateful to have that mostly done. 

We wanted to be in school long enough to get our students back into the groove of the day to day schedule.  I found myself anxious to get to school and anxious to hurry and get home. While at school I cherished the time with my students and yet, wanted lots of updates on Libby.  My heart was stretched to want to be with both.  

Here’s one of Libby’s favorite songs to lighten this update: https://music.apple.com/us/album/piano-man/158815463?i=158815547

This week several things fell into place: teacher volunteers to cover recycling, Care Closet and Snack Shak for our campus and the right people to cover my classes.   (Cannot tell you how much I’ve worried about making sure the people who need the food get it while I’m out.  It’s going to be okay.)

Every day for the last two weeks she has changed in some small manner.  As of Wednesday, the 19th, Libby is refusing food.  She is also declining almost all liquids.  Thursday she would not even take her crushed pills for me.  (I was a bit dumbfounded.  She refused anything from me!  The nerve…) 

For the last three days, she is no longer taking  her meds five times a day. She is getting her seizure med and a small

Relaxant.   That’s all. My days are completely off.  That five time a day schedule has been engrained in me for over 13 years. I’ll need to get retrained. 

I believe she has had her final shower as I’ll move to giving her bed baths.   So many of the  Caregiving activities, like showering and shaving, are more to make me feel comforted and needed, not because it’s vital for Libby. I can let some of that go. 

I know this is part is all part of the Hospice process. It is not about our typed out timeline or our expectations.  It’s really between God and Libby. I can envision the back and forth arbitration  happening. Libby saying, “I’m not ready” and God replying, “you can have a wolf at your side every day…”. Or “I’m ready” and God responds, “not yet. It isn’t time.” Either way, I know there’s some push and pull going on.   I mean- it’s Liberty. 

Liberty is the epitome of STUBBORN which I say with a smile. It’s partly her stubbornness that has kept her here with us for so long.  Now she is in negotiations and whoever “wins” won’t really matter.  We will love her out as fiercely as we have fought for her. 

Starting Monday we are home with Libby.  I have very few days to take, but  I’m not going to concentrate on that aspect.  Right now I am right  where I need to be. Being with her is vitally important right now. 

Thank you all for your ongoing love and support. 

Docile and Compliant

 We have been blessed with several very lovely holiday get-togethers.   Libby loves to have her people with her.   She is such a rock star.  

Sharing some raw realness. I don't know if there is a step-by-step guide on how to do this.  Surely there is a section in the parental learning manual titled, "How to completely lose your shit while your child dies"  or, "How to gracefully let your child go."  These are my current steps in no order.  

1. Be angry.  Be very pissed. Tattoo guilt on your face. Ask all the whys. Wear righteous indignation like the emperor's cloak.

2. Try to handle the anger by doing online research and then regret it immediately.

3. Be envious of other parents who have healthy children.  Why is life so damn hard?

4. Also, be envious of those who have successfully raised their children and are empty nesters. 

5. Immediately feel guilty for #4.   Try on grace for a long moment. 

6. Doubt everything you've done as a daughter, mother, wife, friend, and human.  

7. Blame the illness on everything from the Purple Tella Tubby to Crop Circles to passing a curse on genetically. 

8. Try to race ahead of the typhoon of grief, make a list, and then feel like you're drowning; dream repeatedly of water.

9. Lose the list, or throw it away because you can't hold a thought in your head and suddenly realize it doesn't matter.

10.  Ask "How much time do we have?" Register the look from the Hospice Team and not ask again because who really knows.

11. Walk into three rooms and not remember why I went to any of them, or I'll Pick up an old toy and carry it around the house for no reason.  Did I start the load of laundry?   Try to give her juice again?  Are the bed room doors closed?

12. Get my shit together and try to work on school stuff.  

13.  Regret spending any time not focused on my child.   Remember to trust in faith.

14.  Escape from the caregiving because you cannot breathe and then regret not being there.  

15.  Look online for support groups, support articles, anything to remind you that you are not alone.  Anything that shows that other Mommas have survived this.  

16 Read articles about grief and anger and caregiver burnout.

17. Start another conversation about the future plans for your kid and swallow those words like you've been starving.  

18. Get more sad than angry.  Go silent.

19. Discover that you have worn your daughter's old bra all day and never noticed it- just felt vaguely uncomfortable.  Tell her about it and get a blesssed giggle.

20. Constantly look for any signs of the ugly insidious approach of her passing, and beat myself up when I think I have missed something.  

21.  Ask how I am supposed to survive this.  Is that the expectation?  Just need the rules.

22.  Try to hold on to faith and sunlight.  

23.  More rambling crap to incoherently follow...

Libby's body is moving through the stages as her body gets smaller and smaller. She still gives us giggles and some smiles, which I am ever grateful for.  She is spending more time staring blankly; I think she is listening to KT Oslin, Johnny Cash, and now Betty White.  

We have the Hospice bed now which is keeping her much more comfortable through the days in the front room.  I've been surrounding her with her pack of babies.  This gives me solace.

  I need to change Libby's name to Docile or Compliant.  She is refusing to eat or drink very much. I am a Southern Momma who wants to feed EVERYONE, but not this kid.  She is 100% Liberty.   She is not able to stand on stiffened spastic legs to help us transfer her from chair to bed and bed to chair.   Her legs are now not responding.   Still spastic, just not load-bearing.  The slow and steady decline is no party and isn't for the weak of heart.   But here we are.  As for now, she is still herself and I pray she knows how loved she is.  

Liberty and all of her beautiful stubbornness- “Broken Horses” https://music.apple.com/us/album/broken-horses/1577159552?i=1577159680 

Liberty turns 25 next week.   Trying to plan a celebration that won't wear her out and can keep everyone safe isn't easy. I do know that I'll be asking for small hygiene products for our Care Closet and/or monetary Snack Shak donations.  Will continue to give and serve as we can.   Grateful to be able to be ugly honest. Here is the announcement   We will ask for safe considerations of our girl.

Thank you for your thoughts and prayers.   

Ugly Tuesday

 I am not a fan of Tuesdays.  Just not a fan.  And I believe that Tuesday doesn't care for me either.  There is a karmic list somewhere that entails all of the ugly Tuesdays I've endured.  Sometimes it's a litany of little things.  Other days, it's one big thing that shifts my heart from a waltz to a mosh pit.  This week, the Tuesday shifted me from complacent and determined to sobbing on the phone to our Hospice social worker.  

I've been racing home every day because our gracious caretaker is staying past her predetermined time until I can get home.   Until Grandma Linda gets better, there's no one who can stay with Libby until I get home. Tuesday is usually shower day.   Showering Liberty is generally a time fraught with little dangers.  Because I have slipped a few times barefoot, I have special shoes for showering and Libby pooping; I call them my shower shoes. Just getting her into and out of the shower area is dangerous.  Keeping her safely on her shower chair is dangerous. Not getting her body dried off quickly and completely is dangerous.   Holding her on her potty chair so that we can change the dressing on her feeding tube, get deodorant, bra and t-shirt on is dangerous.  On alternating days, forcing a poop while on the potty chair is dangerous.  This involves a blessed suppository before we get into the shower- keep that in mind.  

This Tuesday was a double-up day: shower and potty. 

This Tuesday, Liberty was stiff- very stiff.  If she wasn't smelling so icky, I would have postponed the shower due to this stiffness.  (I do bed wipe-downs between showers.) We made it through the shower.  Got dried off.  Got her onto the potty.  Got her deo, bra, and shirt on.   ((Deep breath))   Went to cut the dressing and tape off of Libby's feeding tube and the whole damn tube popped out.   This happened simultaneously as Rachael was wheeling Grandma Linda into our house. 

I tried to push that tube back in.  I folded that little anchor balloon and tried to save the tube.  Keeping the feeding tube has been so important.  This is how we have been getting the liquid meds and tinctures into Libby.  This is how I have been getting more liquids into Libby.   This is how we have been able to give her the much-needed high caloric formulas.   

In my mind, I politely asked for Rachael to join us in the bathroom.  I was also calling our Hospice nurse who was in an intake and didn't answer.   I called the Hospice Social Worker which is when I broke down.  I knew that we would not be replacing this most vital tube.  It has been a lifesaver for us.   Some days Libby swallows liquids very well and other days she chokes.   That tube has been a blessing.  Now it is gone.  I ugly sobbed on the phone while trying to dress the quickly closing hole in her belly.  This whole time, Libby is looking at me so weirdly as she doesn't really know what is going on, except that she needs to poop NOW.   This dual-purpose bathroom visit is carefully timed.  Very carefully timed. 

By the time I got off the phone, it was DEFCON level three for Liberty's potty time.  So my shower shoes, old running shoes, became truly SHIT SHOES.     

Good thing we are washable.  R.I.P Tummy Tubaca

We made a few more calls and discussed for the next few hours and decided that we would not be replacing that tube.  I believe her body rejected that damn tube and spit it out.  Libby has been pulling and fussing with it.  Sometimes she has even grabbed at my hands while feeding her through it.   I pray we can continue to add additional calories without the tube.  So far, we've been doing good with the additional little feeds throughout the day.  

This Tuesday literally shit on me and metaphorically on Libby. Little laugh before we continue

Now on another battlefront, it is looking like Liberty's baclofen pump will be refilled next week.  Her pump refills have been every six months at Cook's Children's in Ft. Worth.  That may be too far for Libby to make it in a car.   Then I thought, okay, we can switch to pills.  It's a terrible transition from pump meds to pills. There is the element of the ugly detox as well: big difference between meds through your whole system than meds through your spinal fluid.  

Then there is the cost.  We have an appointment here in Amarillo on the 15th,  but the funding is an issue.  We are talking several thousand dollars.   It is magical what a call from our BELOVED Dr. Hottie, Dr. Acosta, and our Hospice Care team can cure. That is how we got the appointment on the 15th.  

Praying for this appointment to go through.  Wait, I almost forgot the kicker- her pump has an internal alarm.  This will start beeping on Wednesday. That's right, her belly will be beeping at us.  

I cannot express the amount of disparity in my emotions. These last few days of this semester are so important and I will be grateful when we finish this semester just as I have been blessed to get to school most days.    Hoping for the very best non-Tuesday days ahead.  

Whatever is going on, you are enough.

Flying

Sunday afternoons we try to watch something that we all enjoy. This Sunday we stumbled upon the series on National Geographic, “Dr. Oakley”.  She’s a veterinarian in the Yukon. At the end of one episode Dr. Oakley has rehabilitated two eaglets who each had a complex fracture in a wing. They were born normal, but some trauma had taken their very important ability to fly.  Weeks of rehab and healing and they were ready to be released. 

“We started with two young birds that were quite broken and now they’re being released. Now they can fly.”   

Seeing those eaglets fly off after weeks of healing, reminded me of Libby.   She was once whole and has spent over half of her life with a body that has become progressively more dysfunctional.  

Sadly our medical interventions have not healed Libby, but they have helped to keep her happy and comfortable.  Since earthly healing has not come, she regain her wings through other worldly powers.  

One day, she too will be healed and fly away.  She will fly again because our God will remind her how.  

https://music.apple.com/us/album/ill-fly-away/269440847?i=269441201