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.