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.

Tomorrow

No rest for the weary of the wicked- I may be both! We head to our first doctor's appointment tomorrow.  I was able to triple stack this time: pre-scheduled every three month Botox, Deep Brain Stimulator check up, and Baclofen trial. 

 

Our appointment is for June 2. 

Libby has had more pain and been whiney and miserable in the past month or more.  Her nerve endings are pretty messed up so she may complain that her ankle hurts when it's really her knee.  Keeping her on pain meds isn't successful as she becomes very moody, growly, and well not nice.  We've tried several different kinds of pain killers and they cloud her brain in a way that isn't okay.  The Libby we all know leaves the building.   I don't want her in pain or uncomfortable, and I want her eyes to sparkle with her Liberty-ness.  (Yea, I know none of this is about what I want.)

Botox helps, but there isn't enough alotted every three months to relax her upper body and her lower body.  The Deep Brain stimulators do help as I've seen how completely rigid and locked she could be. Can't unsee what that was like. 

We are doing a Baclofen trial to see if she can handle the muscle relaxer, Baclofen, being pumped into her spinal fluid.   We tried several years ago and I freaked afterward because Libby couldn't walk or move her legs.  That was when she was still walking.   We don't walk anymore. 

This appointment is the first step to getting a Baclofen pump inserted into her abdomen and a catheter carrying the muscle relaxer to her spine.  This would allow her lower body to be pharmaceutically relaxed without having the high doses of the drug running through her blood stream and fogging her brain.  With the Bac Pump we will be able to use all of the Botox in her upper body and that will be better all the way around.   I also have some hope that the Pump might help with the ever increasing potty issues.  

 

 

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=42865

So, off we go.  We haven't gotten final approval of her new wheel chair or the lift for the van yet. Hoping that'll happen this summer as well.  But, we all know, my hopes don't matter I the grand scheme.  They are just that; the silly hopes of one mom.