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.