Nine Months of First

 Nine Months of Firsts

I pray that the words of my heart ring true and offer healing, forgiveness, and hope. 

First February and Mariah’s birthday without Libby.  First Spring without Libby.  First Easter. First Mother’s Day without Libby. The first end of a school year.  First Summer without a family vacation altogether.  First New school year. First every day.  Every day is truly a day without Liberty, and some days that is very hard to reconcile when I am growing and healing on my own time. I am so very blessed to have an honest relationship with Mariah who has her own journey to traverse with her sister in her heart.   She strengthens me; she is a force to be reckoned with every day.

So much has changed in my world, and I know that I have been the catalyst of many of the changes.  It has been growing- a lot of growing.  It has also been a lot of aching hardships as I learn how to ride the waves of grief.  Liberty passed away on January 30th  with a beautiful hospice team, her favorite music, and her beloved family around.  So many of her loved ones were able to be there to say their farewells and offer support.  It was hard, and it was lovely.  I could not have asked for it to be more peaceful as she passed.  

Slowly my body is resetting, and I am no longer waking up multiple times a night to give Libby her meds or check on her. Now instead of getting up or reaching for her, I say her name and tell her I love her. I was blessed to have been part of her care team.   This time last year I knew Libby would not be with us too much longer.  Memories of last year are either convoluted or terribly clear.  There are many things I do not remember or don’t want to. For months, I would wake up mid-anxiety attack and/or crying. I knew my world was crashing and all I could do was what I could do: love the kid and support the others who love her.   

It was the letting go with grace and faith that was hard.  This hardness hits on and off like waves but hit full tilt in the last couple of weeks as my birthday approached.   It took a while for me to realize that the heaviness I felt was the fact that I am still here and Liberty’s is not.  Parents are not supposed to bury our children period. Losing a child in any way should not be part of the roller coaster we call life.  And even though it was a peaceful and perfect homegoing, it was still going away from our girl.  The child we all fought for and pushed to keep her happy and comfortable for so long is gone.  Still, I remain grateful to have been a part of her journey.  Grateful.

I am putting that heaviness off, as I cannot undo or change the long, hard, and blessed road we all traveled beside Liberty.  Now, we all need to forge new paths without her physically here.  Since April, I have made some big changes in my life.  These changes were for me to create a way to grow and heal.  After over 13 years of being a caretaker, I needed to be able to find who I was and try on the new growth my spirit was craving.   

I moved out of Happy and got a place for me to live in Amarillo. I have never lived alone.  Never had a bathroom or a closet to myself. It has been a blessing and a new kind of being.  I am learning to simply be in my space.  I enjoy being close to the church, school, and even stores, but  I miss the open spaces in Happy, the beautiful friends, and the community.  I miss my dogs and other animals, so grateful to have Monkey with me in Amarillo.   

My move caused many people I love pain, and for that I am sorry.  I needed to breathe and heal my own pains. I needed to go. I separated from Rachael.  In therapy, I have learned that two disparate things can be true, such as I didn’t want to hurt anyone,  and yet I needed to go for myself.  Completing the steps to end our relationship was hard.  We had many, many years growing together.  Now I pray that we can each grow strong as the individuals we are capable of being.  

   

I changed my job as well.  I went from teaching Advanced Placement English Literature and Dual Credit to returning to my first love in teaching: Special Education.   I am a co-teacher for several wonderfully talented teachers.  My learning curve has been huge; I love the challenge.  The world of Special Education has changed greatly in the last 15 years, so I have great things to learn. I am trying. My short-term memory is not great partially due to grief.  I am excited to keep trying and learning in this new position.    

https://music.apple.com/us/album/graves-into-gardens-studio/1524503069?i=1524503568

 

I pray that all that have loved and cared for Libby can grow and continue to share the love.  As this is my first birthday without her, may we all keep moving forward in love and hope. Every day is a day without Liberty, and yet she is always with us.  I have carried this grief in a pregnant heart as we step past the nine months of changes.   I am sorry I have not been sharing for so long.   Been doing the work and processing it on my own time.   Thank you all for your support. 

Six Year Diagnosi-versary

I     It was a lifetime ago when we got one of the best and yet convoluted phone calls ever.  The call that meant that Liberty had a diagnosis-finally.  We had something to fight against and a possible direction to follow. 

     After months of testing, while Libby lost the ability to walk, talk, and feed herself, and many, many specialists we had a positive.  She tested positive for a test that the eye doctor had ordered; positive for Lyme disease.  That doctor's nurse was happy to tell me that after a round of antibiotics she should "be just fine".   I called our Neurologist and told his nurse. We got an excited return call as Dr. Acosta believed that she would return to a new kind of normal if we could stop the brain atrophy from continuing.  

     We began massive amounts of research and queries into what we now know is the world of Lyme.  Because the American Medical Association doesn't believe that Chronic Lyme exists, there aren't  accessible treatments. In the eastern and south eastern parts of the U.S. Specialists exist that believe that even after Lyme has been attacking the body for years you can be "cured".   Libby has had several regular rounds of antibiotics and IV antibiotics for 30 days. Nothing changed. You can't grow back part of the brain that has died. 

**New research continues for Chronic Lyme.  

      Our reality is different.  Lyme gave us a seriously atrophied brain and a greatly compromised neurological system.  Then came the diagnosis' of Parkinson's, Dystonia, severe spasticity, ataxia and speech apraxia.   Cycles of meds, tests, medical staffing, more tests and new meds have left us with a pretty good idea of where we stand. 

      Our most recent evil gift is Detrusor Sphincter Dyssynergia; Libby's brain and her bladder/colon do not communicate on a consistent basis.  A bathroom, fluid/food schedule, and preparedness are our current method of defense.  I have to admit that this part sucks on a whole new level. 

      She's had years of speech, physical and occupational therapies that have given me a love/hate relationship with these wonderful professionals.  Mention "therapy" to Liberty and she will give you an ugly look. 

       Sometimes I wonder what our life would be like if we didn't get that initial diagnosis.  Would she still be here? What treatments and meds would we have pumped her full of trying to keep her alive and going?   Knowing your enemy is better than not. 

      

      The good news is that her brain has been stable and no new signs of atrophy since the last scans.  Not willing to lose more of her.  

     The other news is that Parkinson's and Dystonia continue to ravage her body, but we have an every three month regimen of Botox, five time a day pill schedule, and her Deep Brain Stimulators that we check/charge daily.  

In the future she may get a baclofen pump and maybe surgical relaxation of her hands.  

     Most importantly is that she is stil here. Her beautiful personality shines past everything. There are things that happen in life that truly aren't fair. Things happen that just suck and that aren't deserved. I have taken the blame for her infection and her illness in the eyes of many.  I wish I could take her illness from her, but I can't.  I would give anything to carry this for her, but I can't. I can only continue to be her voice, her muscle, and her advocate.  

      In the six years Libby graduated from high school, I completed two Master's Degrees, Rachael has almost completed her Doctorate, and after several changes in degree plans, Mariah is nearing the end of her college time.  I can't say that I have regrets for the last six years as I believe we have done our very best for Liberty medically, socially, educationally, and emitionally. There are so many things that could have happened to this child and I am always grateful to have had the chance to fight for her.  

     We continue to be blessed and know that we make choices everyday to live the best life we possibly can and to not let our circumstances determine out outcomes.  I believe in hope. 

Happy diagnosi-versary.