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.