This is not my story; this is Liberty's story. I am just cataloging her journey. It used to feel like a bite was being taken out of me every time I told her story. Now, it is a review process that allows me the chance to remember and remind myself of how far we have come.
(I took three older posts and added the last few years. I apologize if there are still repetitions.)Libby was born on her due date perfectly normal on January 9, 1997, in Ruidoso. Her sister, Mariah, was my birthing coach.
She met every cognitive and physical measure early including crawling out of her crib at 9 months. She was so adventurous that she could have been hurt many times. Libby loved to climb and hide. She would climb up anything she could, including bookcases, weight racks, and later tops of cars and trees. She earned the nickname "Eagle Eye" as she is able to see things others miss.
If there was a way to push the boundary, she would find it. She is the personification of her name in every way. She didn't care about rules and hated being told to speak to people on command, and Lord help you if you wanted her to hug someone. Liberty didn't perform on command. Now, let her listen to a song once or twice and she would memorize it. By four I could challenge her to see if she could memorize a song faster than me. I would begin a song lyric and she would finish it.
We are outside people. We camped, hiked, worked in Palo Duro Canyon, and Geo-cached everywhere we could. It was no big deal for us to play in the water in the canyon or return from hiking, and then check each other for bites. It's awkward, but it is what you do, especially when the grasses are taller than your kids. This is the Texas Panhandle and if the heat and cold don't kill you, then there are plenty of things that'll bite you.
In 5th grade, Libby was Commended in her Reading. She even earned a phone call home from her elementary librarian with questions as to whether or not Libby needed to read Janet Evanovich and Lord of the Rings instead of her AR books. She was rocking her trumpeting skills in band, singing in front of everyone almost every week at church, and working on her basketball skills. The math and physical coordination genes did miss this kid. Math and coordination did not come naturally. Socially, she preferred animals to people and would rather play than abide by any girly stuff. She is our little wolf and LOVES dinosaurs.
The night we returned from our last big camping trip in July 2007, where we had been to Southern Utah and Libby had what we believe was a massive seizure. Mariah woke us up and saw Libby mid-seize on the top bunk. This changed everything. We headed to the nearest hospital by ambulance and our testing trials began. Even though there was blood taken, there was little analysis and we were only given the advice to get her seen by someone who deals with seizures. We brought up several times the long camping trip and the land, lakes, and streams we had been swimming, fishing, and hiking in.
The next morning we were sitting in our pediatrician's office and were then sent with referrals to get the EEG and EKG to see if there was anything neurologically wrong. Over the next year, Libby had visited hospitals in Amarillo and Lubbock had three more seizures, many EKG and EEG's, MRI's, sleep studies, and lots of blood work. Nothing. Everything came back normal. We carried paperwork that stated she had an Undiagnosed Seizure disorder.
In November of 2007, Libby's Grandpa, Terry Collins left us. She didn't cry or sing for months. She stopped drawing and writing her stories.
The next year, 2008-2009, 6th grade seemed fairly normal. Her big sister, Mariah, was a senior and the world was changing, so normal may be the wrong term. Looking back there were many signs that something was affecting Liberty neurologically. You don't know what you don't know. Her speech showed some weirdness, where she would drop off parts of words. Interestingly, her singing remained outstanding. Her ability to play her trumpet at the high level she had before remained static, except for sometimes she showed an inability to sustain the breath needed. Her handwriting got weird, really weird. But this is the kid who invented her own writing that was only to be read by animals with paws when she was three or four, so weird handwriting- eh. She started sneaking spoons to school in her lunch box instead of forks. She also started using bendy straws, we call them "sick straws" as well.
Her shirts had some weird stains and I would find them hidden in weird places. She tried to shave her legs for the first time and called me crying because she had cut her leg, also not unusual. Now, when she decided to use a razor to trim her eyebrow and called me with a thug-looking brow into the bathroom, I took the razor away from the kid who was starting to shake- alot. Once we made it through Mariah's graduation and summer hit, we got Libby into singing lessons. We did elocution practice at home, as well as some handwriting review. We spent that summer building up Libby's self-esteem. (I thought she was acting out because of the loss of her Grandpa and her sister graduating.)
I noticed a tremor in her hands and started watching her blood sugars and eating patterns. Diabetes does run in my family. I noticed that she spilled food a lot and had trouble drinking unless she used a straw. She had probably been having hand tremors for a while and had hidden it. I didn't catch it.
In July 2009, she started her menstrual cycle. In August she passed her yearly Pediatric check-up and we were reminded to keep an eye on her emotions as she may be depressed and reacting to Mariah's graduating and the many other changes. She also passed her athletic physical to play basketball and tennis.
We went on a regular hike, a long hot hike, and I basically had to carry Libby back. She said her left leg hurt and didn't feel right. I thought she was being a wolf princess butt and was claiming fatigue.
7th grade started and her teachers began contacting us about changes they were noticing in Libby. She was referred to a local psychiatrist. I made an appointment for the middle of October to check in with our Pediatrician. The school's diagnostician did some cognitive tests and called me on October 2, 2009, my 39th birthday. She said that she thought that what was going on with Libby was biological and that she thought something was wrong.
By the end of the first six weeks of her 7th-grade year, 2009-2010, Libby was falling a lot, her left arm was curling in whenever she run, she couldn't get a spoon to her mouth, she couldn't rinse out her hair, her handwriting was illegible, her speech was disintegrating and she collapsed one day on the way home from school. An ambulance brought her to the nearest clinic, her Pediatrician's clinic, and all tests showed nothing. She must be very tired.
We saw our regular doctor and then more tests at the hospital in Amarillo, then on to Lubbock. The Neurologist was in Lubbock, the same one that we had seen for the seizures. We were referred to Cook Children's in Ft. Worth. On Rachael's birthday, November 12th, we arrived on a Thursday evening in November, by now we are helping her shower, dress, and feed herself. That Friday, the first doctor we saw referred us to another and ordered tests. We were to go home, pack, and return on Monday prepared for a long stay.
We were in the hospital for 14 days. During that time every sort of test you can imagine was run. At first, they thought she had a very progressive form of early-onset Multiple Sclerosis, or Huntington's, or a form of Palsy, or maybe she had gone through multiple strokes, or ALS, Wilson's, Meningitis, HIV, and more that we cannot even remember. Libby had blood tests, EKG, EEG, Lumbar puncture, Liver biopsy, skin biopsies, 24-hour urine catch, more blood tests, and an MRI with and without resolution.
The MRI showed an area in her right frontal lobe the size of a quarter that had undergone either atrophy or necrosis. Her brain was also smaller than it should be. Basically, that portion was dead and not working. This area had been missed by all the other MRI machines she had been in. The one at Cook Children's had more power or resolution. What our Neuro doctor, Dr. Hottie said, is that something had probably been killing that part of her brain for a long time and that she had slowly been losing her fine and major motor skills for some time. It had finally reached a critical mass and that is why it seemed like she had fallen apart all at once.
Her Lumbar puncture showed something, a possible form of Encephalitis. He gathered a crew of specialists, including a Geneticist, who did all of the background testing possible. Down to requesting the chemical results from our water system here at home in Happy. They also had Carbon Dioxide detectors placed in our house just to make sure. We asked again if she could have caught something during our outdoor exploits.
We were told at a staffing meeting, think of the TV show "House", to start thinking about whether we wanted quality or quantity of life for Libby. We chose quality that day. We still choose quality. We were released on Thanksgiving Day, 2009, with two more referrals back home, therapy referrals, a prescription for a Parkinson's medication, Sinemet, and follow-up appointments at Cook Children's. We were told to get her baptized and prepare our family, at the rate her degeneration was progressing we didn't have much time.
After we returned, the first appointment was a basic eye appointment for further testing for Wilson's or other genetic abnormalities. Christmas happened. New Year happened. We were in shock and grateful to be home. My little wolf cub doesn't do well in captivity. On January 2, we saw an Ophthalmologist. After going through the whole background, he performed his regular eye exams and asked if she had been tested for Lyme disease. He ordered blood tests, didn't know eye doctors could do that, for Cat Scratch Fever, Lyme, and Rocky Mountain Spotted Fever.
January 10, 2010, the results came back positive for Lyme through the ELISA Lyme test. I called our doc at Cook Children's and left a message about the results. He called back and said this could have been caused by Lyme. Our local Pediatric doc and Dr. Hottie agreed to a two-week course of antibiotics to cure her of Lyme. That is what the American Medical Association, AMA, recommends.
She wasn't cured. We began researching immediately and found that there are cases worldwide of terrible unexplained illnesses that have been traced back to Lyme. We also learned of governments worldwide not treating Chronic or long-term Lyme. We also learned that there should have been a bulls-eye rash followed by flu-like symptoms. Libby never had a rash. When camping, we showered in twos. After hiking we checked each other. We learned that many, many cases of Lyme go unnoticed because there is no rash and no flu-like symptoms. We also learned that Lyme was rare in our area. We also learned that many people die because Lyme likes to attack hearts. Libby's heart is still good. Her neurological state has been decimated.
We have continued to get our main treatments and testing done in Ft. Worth. Each time there may be a new specialist to meet, different tests to be done, new meds to try, something. In 2012, we met with a Pediatric Rheumatologist and an Immunologist. They ordered a PIC line and a six-week protocol of heavy-duty antibiotics since that was then what the American Medical Association recommended for tougher cases of Lyme. She wasn't cured.
She has never tested positive for anything else. Most gratefully she has not had any other seizures until recently.
We have had our genes mapped and there is nothing genetically wrong with her. She has been diagnosed with Secondary Parkinson's, Spasticity, Ataxia, Speech Apraxia, and my least favorite, Dystonia. On medical paperwork, she has Arthropod-Borne Encephalitis.
She has had two sets of AFO leg braces, lots of hand braces, and a neck brace. She has had three official wheelchairs.
She takes Sinemet, Baclofen, and Clonazepam. What started as a turned in left hand, has traveled to her left leg, then foot, then right hand, then right leg, the right foot, and her neck. Parkinson's has given us an additional gift with swallowing issues that are made worse by the Botox that loosens up the rest of her body.
In 2015-Libby's left foot had reached 90% Achilles contracture and she had bi-lateral tendon release. We believed after recovery we would work on walking more. That didn't help much as her body fought back with a vengeance. Liberty graduated from high school where she was active in art, choir, and community service. She was voted Caprock Prom Queen in 2015.
In the summer of 2015, we completed the required Department of Aging and Rehabilitative services Neuro-Cognitive testing. They had to prove whether or not she was employable in order to provide services. We had to go through DARS to help get services for Libby and college. DARS was the gatekeeper to many services for Libby. We really still didn't know how life after high school will look for her, but we knew that she will have a life.In July 2015- Deep Brain Stimulators were inserted that we charged about every other day.
She has been on a five pill-a-day schedule for years; her main one is the Parkinson’s drug. She had a baclofen pump inserted into her abdomen as of last Thanksgiving 2016.
In 2018, she now had the neurological and muscular diagnosis of Parkinson’s, Bladder and Sphincter Dyssynergia, dystonia, spasticity, ataxia, and speech apraxia.
We’ve tried lots of things including physical and occupational therapy, clean eating, weighted blanket, and even blessed water. Libby’s body continued to stiffen and struggle. We fought her spasticity with many, many Botox injections until they stopped working in 2019. We have gone through four different therapy places.
Our Neuro, Dr. Hottie, couldn't give us a prognosis or any kind of timeline. He told us that we have been living on “bonus time” for a while. She was outside of any medical normalcy. As we talked about the progression of her diseases he reminded us that these last years are beyond what he could have predicted.
In March 2020, we went into COViD lockdown. Libby was home with us throughout that spring and summer. When we went back to our classrooms, she stayed safe due to her careful caregivers. Her body continually declined: her stiffening was ever-present. We have increased her clonazepam to offer some relief. Her ability to speak and answer basic questions dwindled away. Her weight continued to drop.
In May of 2021, Libby's Parkinson bite caught her index finger in her mouth and broke the skin. She bit her finger so very hard. She has worn a specially ordered hand mitten since then. (Now I believe she had a seizure and her jaw locked down.)
As we prepared to finish out the school year, Libby began crying almost every night. By the end of the month, she is crying every evening: uncontrollable and inconsolable. This continued throughout the summer. Liberty's period has stopped.
In June we were asking her local doctor for guidance. In July, we knew she was Sundowning. This is not the quality of life we have focussed on. We began making plans for Libby to stay at home with caretakers when we started school. Getting her in and out of the cars and into wheelchairs and out take a toll on her very little body.
In August we went to get her baclofen pump refilled at Cook's. The next day we got her feeding tube replaced in Amarillo.
On August 4th Libby had a full seizure. One of the few things that I have pleaded with God about is seizures. They are terrifying. She has had several more since then. We are now of Keppra to keep the seizures at bay.
On August 19, we began receiving Palliative Care. This is a blessing. It is a true gift to have support for the caretakers.
On October 11, we signed Liberty in the Hospice Care program. She needs more and more eyes on her. More support. She is changing incrementally and I don't want to miss it. Having this wonderful program in place has given me some peace. We want her to be calm and happy as long as possible, but most of all I want her to be HER. Some days it doesn't seem like she is my Libby: my wolf girl. Then the next day she will smile and giggle and it's like the sun shines again.
https://music.apple.com/us/album/grit-and-grace/1527828770?i=1527828773
School remains my safe place. We have wonderful classes and could not be more blessed by our campuses and our peers. Each day I am ready to be on campus and then want to race home as soon as I can. This is hard. Loving her through this is hard. And it is beautiful.
Every day we are blessed. This continues to be our bonus time with her. This is not my story to tell, this is hers. We continue to learn Liberty.
