The Mostly Short Version of the 12 Year Saga

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.)

https://music.apple.com/us/album/tiny-dancer/1440643462?i=1440643464

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 spent the weekend putting up our Christmas decorations almost as if we had the recognition that the return visit to Cooks would be a more extensive stay. We also had Mariah come home so we could talk to her and prepare her. For what, we didn't know. From Rachael: I can vividly remember being up on the roof of the house with Mariah hanging Christmas lights and talking to her about the very real possibilities of where we might be headed with Liberty and what a diagnosis could bring our way. I didn't even know and now I was having to prepare Mariah that her sister might never be the same again. It wasn't the same jolly time we'd had in previous years putting up lights with Christmas songs playing in the background. 

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. 

In November 2019, we pursued getting Liberty. She has been dropping weight for the last three years. We went through three different procedures to get the feeding tube placed. Because of the way her body twisted, her stomach had lodged itself partly under her rib cage and could not be inserted easily. This was the last time she was placed under anesthesia for a procedure.

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.  

You are loved.

Busy

 
      Sometimes I dream of the Liberty we had.  In my dream she is supposed to be inside playing, instead she is high up in a tree.  Her hair is in pig-tails and she is wearing her Crocodile Hunter outfit. There are dinosaurs in her pockets. Or laying on the trampoline with her dogs. Or she's built a blanket fort and is singing to her stuffed animals, or her dinosaurs.  Whatever is in this version of the Liberty dream, you can assume she is doing her own thing and she is busy.  And I am busy as well. I prayed several times for this dream to change and that I would go and watch her play (or join her). Sometimes it happens. 
      I was not a child who could be still.  Ever.  From what I have been told, I was busy.   About the only things that seemed to settle me were music or sitting on Grandma's lap while she read to me. Beautiful Mariah could sit and play or cuddle and watch a movie- most of the time. Like the wind, she could have some super active times, but her movies would keep her attention for long periods of time. Now, Liberty.  Sweet Liberty was always busy as well.  She climbed out of her crib at nine months old.  She was uncontainable from then on. Grandma told me Libby's truth was in her name.   I had claimed her business when I named her.   That hasn't changed much. 
       Even now, Liberty is busy.  Her body is stiff and mostly unmoveable.  She doesn't have control over it, but her body continues to move.  All the time.  Sleeping, wide awake, eating, laughing, or pottying her body is moving to its own rhythm.  She has Deep Brain Stimulators, one of each side of her brain to calm her body down. She has a Baclofen pump that is routed through her spinal column giving her muscle relaxant continuously throughout the day.  She takes a Parkinson's med five times a day to slow the jerkiness of her muscles.  All of that and yet she is busy.
       During this time of quarantine, I have been able to see Libby for who she is now.  She is still sweet and funny we just have to pay attention to when she can let it out.  She gets impatient at times.  She is sappy and lovey at times.   She is tired a lot of the time. Blessed by this time with her, I have been able to get to know and see her for who she is now.   This is not the child I had ten years ago.  Or five. Or two years ago.  She is different.  She has to be.  Her body and brain has betrayed her, and all of us, in many ways.  I could be angry and sad, so very sad, at this betrayal, but that has consumed far too much energy already.  I can see her for the completely different and beautiful person she is.
      She still has a voice, of sorts.  Even though we are down to one-syllable words generally as responses.  I miss getting to actually converse with her.  So much.  I'd much rather talk with her instead of talking for her, but here we are.
      Please do not think this is a sad post.  It really isn't.  For the first time in my life as a mother, I have been home with my kid.  I never got to be home with Mariah.  I started working full time when Mariah was five weeks old.  I returned to work when Libby was six weeks old.  I have never not had at least one full-time job or at least two part-time jobs. I missed so much of my girls working for us.  So much.   I regret the time I missed with them, but I did what I thought I needed to do to provide for them. I now know this regular mom guilt.  I was busy.
      This time that quarantine has given us has been a blessing.  I believe this time has prepared me in some ways for our future with Liberty.  I feel more intuned to her body than I have in a very long time.  Life may not ever be this slow again.  Hopefully never again due to a viral pandemic!  I have learned so much from this time and do not want everything to go back to normal.   Our normal was already wonky, and I look forward to creating a new normal.  A normal that is slower in some ways.

       **We have been converting some of our family movies to digital downloads.  I was able to actually one video with Liberty playing.  For years, I could not even look at her younger pictures.  I feared I would cleave in two.  The half of me that is Liberty's would implode.  But I didn't tear apart. I saw the pictures from before.  Before the illness.  Before her body quit.  I watched and cried.  I let myself just cry and laugh and cry some more.  I sat in that revelry.  The beautiful sadness that is this kind of change in a child, or any loved one.  I sat there and watched.   And it hurt to my core, but I did not rip apart. I needed to not be busy and simply see her when she was.  For who she was so that I could see her more clearly today.  Isn't that crazy?!
       Let's think now about how to not be so busy.

        Be blessed and stay safe.  Know that you loved and needed.  We all need each other.

Swimming against the tide

If you’ve ever been swimming in open water you know the sensation as you wade into the water.   Deeper and deeper you walk forward anticipating the moment you become weightless and the water carries you.  Whether there is a tide or not, the water takes over some degree of control.  Even the strongest of swimmers can be swept away unexpectedly.    

Arms pulling forward and legs kicking for and against the tide to advance towards your destination an agreement between you and the water is found. With practice breathing only adds to the rhythmic action of the swim.  Pull, pull, breathe.  Pull, pull, breathe.   Forward I go.   

During some swims I can cometely zone out of the lists of to do’s and issues to conquer.  Other times the current, or an errant ball from a group of little swimmers,  takes me out of my reverie catching me   off guard.   Breathing and swim strokes are disrupted.    Reality returns and I lose my breath.      I already have too much reality.  

This long distance swim, waiting for and knowing a rip tide can pull you under any time, IS life with Liberty.   

I started back to school two weeks ago and my students  started Tuesday.  It has been amazing to start getting to know this brilliant group of people.  I am already excited to see them every day.   

We’ve been just rolling on until yesterday  afternoon when something happened with her feeding tube.  I flushed it and changed the dressing.   Seemed mostly okay.  We went about our errands and finally made it home for shower and nite-nite.  

This morning I couldn’t get the formula to go into her  tube.  The feeding tube was no longer placed correctly and has dislodged.  Instead of going and teaching the first Friday of this school year I brought her to the ER.    

No matter how strong of a swimmer I am I can never seem to anticipate the waves.  I can calculate the crazy effect of the full moon on the tides, but not the effect of having Liberty. 

Here’s the cyclonic issue: is it worth replacing the tube again?    This will be the fourth time since last Thanksgiving.  It isn’t fun holding Libby through each replacement.   Hoping and praying that once again they can simply trace the last track and put in a new feeding tube. Praying for  a few more extra calories for this day.  A few more.  The singular  upside is that her weight has been fairly stable since March.  

I’ve had some very difficult and honest conversations with her primary care doctor in the last six months.   Since there are no cases exactly like hers there are no maps to follow.   Have been advised to keep her happy and as healthy as possible... And to make sure our Power of Attorney covers a DNR.   I will ensure Libby’s happiness and comfort every  moment I can.   

Can’t train enough to be prepared for any of this really.   Just have to continue to be the best swimmer possible.   And push to keep swimming.  

Because they were going to have to change the size of Libby’s tube, they had to sedate her. She now has a shiny new tube and we are exhausted.    Time to continue the swim. 

Love to all

Ileana 

Complicated: We are all weird cases here

We are all weird cases...

We’ve now had two failed attempts to get a feeding tube placed in Libby.   Each attempt is more invasive and hopes get higher. 

The first doctor  said her bowels were up high.  The second said that her stomach is up very high in her chest cavity, and so he could not proceed safely.  Wait.  What?  I couldn’t listen to anything else- just need my kid to be able to get more nutrients into her body.  Such a heart wrenching fiasco. At that moment the why wasn’t as important as when we can try again. 

Next is a true surgery.  Full anesthesia.  We asked for the full surgical process for the feeding tube in the beginning.  She’s terrible to get an iv into- tiny squirrelly veins.  She doesn’t relax enough to be laid totally flat unless she is under anesthesia.  Fully knocking her out is the way to go, but protocol  states that we go from least invasive forward. 

Of course, I always want to be cautious where her health is concerned, but I have a sense of urgency here.  

While we wait I’m trying to not lose patience.   Coming from the land of pediatric hospitals where we are all weird cases to learn that Liberty is “complicated.”  They said complicated.  

Yes. She is.  She is strong. A joy. A fighter. A hope, and some days a pain.  But she’s also still alive because specialists in the pediatric realm listened to our worries, ideas and, dare I say, our gut.    

So here we are holding in a pattern until we meet this surgeon next week.  Meanwhile, she’s losing more weight and eating less at every meal.  

I know she will be okay until we can get some nutrients into her through the tube.   We fought the idea of this procedure for so long that since we made the decision to get it I’ve become more and more impatient.   Every bite, every meal is a fight.   Her favorite foods.  Her favorite drinks.  Doesn’t matter. It’s a battle.  It’s not supposed to be this way.  

Truthfully, the combination of the Parkinson’s and dystonia will only progress making her less able to chew and swallow food.   These same conditions cause her to be so very spastic that she burns thousands of calories a day.  That my beloved friends is a bad recipe. 

I know there is so much that is out of my control.  I can’t stop her stiffness.  Her loss of motor control.  Her loss of speech. Can’t stop so many things, but have been able to make sure that she gets food she loves.   Now we’ve lost that.  The feeding tube will allow us to get the nutrients into her body and then supplement with whatever favorites she can get down.   

So, she’s complicated.   And a miracle.  We’ve come this far on our bonus time, and I will continue to refuse to lose her this way.  Not this way.  

As we approach Thanksgiving I pray we get the tube by the first week of December.    It will just happen or another solution we present itself.   I will not be without hope. I refuse to give up. It will happen. 

In shared determination we send out love and hope, 

Ileana 

Continuity

Happy Summer!

I bring you summer greetings and gratitude for beautiful long days.  Before I get into all of the updates for Liberty and her medical needs I want to share the saga of these plants.  

It shouldn’t be any surprise that I like to grow stuff.  Every year I plant a lot of seeds and seedlings.    I plant many in hopes that some will grow.   This year I put some seeds in our old stock tank hoping they would pair well with my moon flowers.   Well, grow they have.  

One day in late May I noticed that the largest and most promising plant had a bend/crease in the stalk and was resting on the sister plants around it.  

For the last several weeks I have waited for the bent stalk to continue to weaken and wilt away.   The other sister plants around it would be withering as well from the strain.   The opposite has happened.  


All of the plants have grown tall and strong regardless of the weakened nature of the first flower.  The sister plants are boisterous in their following of the sun every day.   The first flower is about to burst with a flowering to offer us all. 

We are all like these flowers in varying stages of our lives.  Sometimes we are bent and have to rely on our friends and families.   Sometimes we are part of the support group.  Whichever part of the growth process we are currently on-we are all growing. 

Liberty had her regular does of Botox at the end of May.  We do not see the great results any more. The worst news from this appointment was that Libby had dropped a little more weight.  Her swallowing issues continue as the dystonia does its hateful work. 

 Two weeks ago we met an adult neurologist who is in Amarillo.  He is going to read her medical records and catch up to where we are in her care.  His practice does handle the baclofen pumps, but not the DBS, so he will look into where we will need to go.  He will not be replacing our beloved Dr. Hottie, but will be adding to our list of medical supporters.   In an important side note, the new doc loves Star Wars and was wearing a bow tie.  I hope he will be willing to take Libby on.     

We have a baclofen pump refil in July.   I cannot think of this  appointment as even a possibility to be our last visit to Cook Children’s.  I believe that the doctors and staff there saved Libby so many years ago, and have continued to save us along the way.    

There will be an appointment with a new adult disability agency in July.    I’m not even sure what all this group offers; I just know that I was told to see if Liberty is eligible.  

My gratitude grows as our strength grows. As we continue learning this new landscape that is the world of adult disability.  There are some real challenges in Liberty’s life that are beyond my control, and that’s okay.    I have no doubt that we will all continue to grow and support each other.    

Thank you my beloved friends.  

   Love and light,  ileana 

Growing Pains

     When I was little I would wake up in the middle of the night with terrible leg cramps.  Jumping out of bed and hopping around- stretching until the pain subsided. It was years later that I learned that by keeping moving I made the growing pains release sooner.  In my world still have to keep moving even if there is a little pain involved. 

     We went to Cook Children’s for a refill on her Baclofen Pump. During the visit we were told that we would need to “find someone” to manage her pump and DBS now that she is “of age.”  Not what I wanted to hear. 

         I love this hospital- it’s doctors and staff.  It is here that we found so many answers and opportunities.  Our beloved doc, Dr. Hottie, has done the testing and questing for our girl for eight years.  It is my trust in him and this place that allowed for the placement of the deep brain stimulators and the baclofen pump.   I do realize that as she progresses we will need someone closer to where we live, and this switch won’t happen overnight.  I love this hospital, and it will hurt to not have the comfort we get there. 

Little One ready to deliver a painting to her doctor, and he wasn’t there.   

   

        Libby’s pump is pumping and her Deep Brain Stimulators are stimulating.  Her weight has been steady since December 8!  That is a huge blessing!  I was warned that as her conditions progress it will be harder and harder for her bionic interventions to make a discernible difference in her tone. I’d rather not know exactly how stiff and spastic she is without the muscle relaxer or the electronic impulses. Some relief is always better than no relief. 

         So, we will be stretching and moving through this transition to an adult neurologist.  Luckily, Libby has an appointment next week with her primary care physician for a complete check up.  It has been a shamefully long time since she has had all the blood work done, so I look forward to establishing a baseline. I will request the referrals needed and move through these growing pains.  

      Be blessed and know that you are loved and appreciated. 

ileana

**Following are pictures from the pump refil procedure. If you are needle shy don’t look.  

               

Birthday

    Tomorrow Liberty will be 21. In a different world I would have fulfilled my duty and finished raising both of my children.  In a different world Liberty’s body wouldn’t be fighting us at every turn.  In a different world I wouldn’t  have to pray everyday that the spark that keeps her her, stays lit.   I wouldn’t have missed the tick that triggered the decimation of her neurological systems.  Her body wouldn’t be fighting so hard against us. She would be whole, and I wouldn’t be a Forever Special Mommy. 

      But this is our world and she is turning 21.    The insurance companies have been calling and sending information since May that reminds me that she will be 21 and an adult. Reminding me that we have to have her adult medical coverage in place to roll it over before she becomes a legal adult.  I stopped counting the number of calls at 27.  That was in October.    Casually saying that many of her caretaking hours and various programs will be cut as she won’t need the same level of care once she’s an adult. Yep. They’ve obviously never dealt with constant incontinence  in an adult size body.  I am grateful that said insurance has been on top of her transition, and we believe we have the next few steps in place.  And many more appointments in the next month. 

      At her regular Botox in December we were reminded that as her body continues to stiffen and the spasticity worsens the Botox will have less and less effect.  My response is that any relief is still relief.   I have nothing but gratitude for any relief she can get.  She had dropped several more pounds.  This is a huge battle.  Getting calories in her as her body burns them constantly being so tight and spastic. Her muscles are constantly in flexion.  Constantly.  Even in a deep sleep.  That’s with the DBS, Botox, and the Baclofen pump.   Don’t want to see her without it. 

       Tomorrow she will be 21, and I am humbled. This day was not promised, none of them are, and it certainly wasn’t expected.  But I believed; many of us did.  I know Liberty’s journey has had a purpose. Some reason.  Some thing.   

       We are celebrating by fulfilling one of her dreams and showing her art work in a real gallery in a real art exhibit.  I am excited and pray she will love her Art Show.    We will have some finger foods and play her favorite music.   Hoping that so many of our loved ones will be able to make it. I believe it will be magical.   

     Happy birthday, Liberty Alaine.  May you continue to be a spark for all of us.   

Not on My Watch

Warning: I will be discussing potty issues.  

We are six weeks into the semester, and it feels like we’ve been at it for much more.  Going through the days like running a gauntlet. Every semester is this way.   Libby loves her art class and instructor at Amarillo College.   

Working on and talking about art make her happy. Being a part of Amarillo College makes her happy and for that I am grateful.  

It’s been roughly two months since she had Botox and her Baclofen pump refilled and dosage increased.     The effects of the Botox will continue to wane and be less effective as her Parkinson’s and dystonia push harder against her body.   

People don’t want to talk about potty issues.  Nor is bathing and dressing someone who is disabled an easy conversation. It’s not as if I ever wanted to know this much- much less live with it everyday.  Embarrassment and inability to control are part of the reaction Libby gives us.  Too often she doesn’t know she’s pottied until after it has happened.  This incontinence is not my favorite, nor is it hers. No one wants to get the message that Libby has pottied again and needs a change of clothes.   Just not what I ever dreamed we’d be dealing with.   Yet here we are.   

(Yes we have seen a specialist and may return again. The interventions for lack of bladder control are not glittery.) 

Yesterday, September 30, Rachael loaded Libby up and took her to serve at the Buddy Walk of 2017.  This is an amazing group of people and providers.   The Panhandle Down’s Symdrome Guild are amazing in their work to support the families of people with Down’s.  

Jasmin, Xavier, and Grandma Linda were there to cheer and help out 

My Key Club and ROTC students were there is multitude. It is truly amazing to see so many young people give up their timeto serve others.  I made it to the park as soon as the run I had already signed up for was over.   

All of the little things we do every day to keep Libby happy and healthy don’t matter if  we can’t stay ahead of the body changing curve.   Her body pushes back against our efforts at every turn, and it’s hard knowing that.    We want her to be out and about, sharing her smile with the world.   Sometimes it’s too hard.   We have to weigh and consider how much energy she has and how much of it we can spend.   She can’t be stuck at Home dwindling away.   

Not today. Not on my watch.  Not for as long as we can.  

So we keep running through the race.   We just keep going on and on.  We have to.   We get to.  We are blessed with the charge of loving both of our kids and keeping Libby happy and healthy.   Everyday is a new challenge and everyday we find new ways of getting through.  In this way we will carry on.   

Be blessed. 

Little Miss Stiff

     It's been too long since I've shared, and for that I apologize.   Like living in the eye of the storm we have been going 900 miles an hour in many different directions.  Liberty's photography class is going very well and she is enjoying her new attendant. Liberty loves going to Amarillo College and loves all her people there.  

      In January, Liberty got her first increase of the muscle relaxer Baclofen in her pump.  Before the pump was placed she was taking 100 mg by mouth every day.    She is now taking 12 mcg through her pump into her spinal fluid.  The increases have to be small due to danger of overdosing. The good news is that her mind has cleared somewhat and she is more vocal.   The downside is that she recognizes pain more often and is unbelievably stiff.  So stiff that she gets bruises on the back of her legs as her body tries to conform to toilet seats and her wheel chair.  So stiff that her whole body is rigid most of the time.   

     Due to scheduling her pump surgery at Thanksgiving, Liberty has not had Botox since before school started.   The difference in her little body is huge.  We hoped that the pump would provide more immediate relief, but sadly, that has not been the case.   As her Parkinson's and Dystonia progress, the stiffness will intensify.  We are pushing against the tide that continues to attack her neurological systems.   Each Baclofen increase should get us closer to  a more relaxed body; we hope.  

       Very soon we go to see her doctors and will get another increase of Baclofen in her pump, have her Deep Brain Stimulator checked, and get Botox once again.    Praying that she get some relief as we have no plans to slow down.  As long as we can- we will keep going.   We are going to live this life to the very fullest we can!  

     Blessings to all! 

Staying Afloat

       Today was a long day: one handsome  Neurologist, 20 injections, a Neurosurgeon, and a group of nurses I really care about made Liberty's double appointments enjoyable.  It was the whole facing the status of Liberty's conditions that tend to drag a Mom down.   

        Today I agreed to something that I once thought I would never want.   Agreeing to have a Pump put into my baby's abdomen was not on my acceptable list.  It's only been seven years ago this week, October, 2009, since Libby's body quit working and we were stumping the doctors at a hospital in Lubbock- a lifetime ago. Since then our reality has changed drastically and so, we adapt to try to keep up, and maybe someday, get ahead of the torrent that is Liberty's health.  

 

    Today, I finalized the schedule to have a pump placed inside Liberty will have a catheter running from the pump to her upper spine. The Pump will allow her to stop taking her muscle relaxer five times a day.  Part of her Brian fog could be gone.  This will, hopefully, reduce her spasticity and give her some relief.  Imagine the stiffness and pain caused by a very long muscles cramp in your leg.   Now imagine that tightness without the pin and needle sign of relaxation.   Yep, that's spasticity as it was explained to me. To me, understanding her pain feels like drowning.  

     Liberty hasn't had her Botox injections since the first week of June.  Her spasticity relentlessly increases; a lake after hard rains. She has dropped more weight; a side effect of her spasticity. Now, we will climb back on our raft of stubbornness and hold on until our date arrives.   

       We also drove to Dallas to visit my Mom in the hospital.  Her falls have made her upper arm break worse.  The move has been hard for all of us. Praying for all of us to adapt and find happiness in this new adventure.   

       Today, I choose to not let the assumed prognosis and the deluge of symptoms we aren't getting ahead of stop me from participating in this day.   And tomorrow.   And the next.   I will make sure that Libby keeps going and living life.   Period.  Now, I need to sleep.  Tomorrow, we have new waves to ride.   

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. 

Bargaining

I haven't posted in awhile as we've been crazy busy and blessed. Libby's dream of going to college has been challenged in several fronts. She finished the semester strong and did well in her art courses; her required basic courses didn't go so well.  Timed reading and math tests don't work for her.  Despite the best efforts of Mariah Jennings and Jennifer Collins, Libby's grades weren't what they needed to be. 

I took a protective easy out and changed Libby's degree plan to a certificate program. This way she doesn't have to take anymore reading or math courses- focussing only in her art and fun stuff. By doing this we lost financial aid and I guess that's the other side of this bargain. Libby continues in college and it will cost us some extra money.

She is taking basic theater and speech communications, along with her art classes.  Learning to navigate the computerized world of graphic design seems daunting, but I'm down for a challenge. I just hope she is. 

We had an appointment with Dr. Hottie at 11:45 and didn't get to leave until after 4:00.  Libby got her Botox, which she needed, and we made plans to do a Baclofen trial as soon as we can get it scheduled. Considering a Baclofen Pump hasn't been something I wanted to do, but if it will keep some of the fogginess out of her brain I am willing. 

I also haven't thought a stomach tube is a possibility, but to ensure her health and get nutrients into her it may be something we move towards. Not yet though.

She's been having terrible nosebleeds. Gross, heavy, unpredictable bleeds. Yuck.  Doc ordered some tests and we were at Cook Children's for longer than expected.

We did a Baclofen trial several years ago and it didn't go well. After the test, Libby couldn't walk- that was back when she could still walk. I can remember saying to our Doc after last trial that I "didn't want to risk her mobility" and he reminded me that one day I might reconsider. Yep, reconsidering. I bargained back then. 

My bargaining happens within my heart as I reach up and out to Powers bigger than me. I am brutally frank!during these discussions because my God never lies to me. 

Years ago- Please, keep Libby's legs moving, we can't carry her.  

Well, turns out we can.

Then- Please keep Liberty's bowels and urination normal. Just let that cup pass without touching her and I'll not complain about lifting her.   

Well, turns out I can handle incontinence pretty well. (High level of suckage though! What college kid wants to worry about THAT happening in class?) Geez!

Next- Please don't let Libby waste, help me keep a healthy weight on her. 

Now I get it. This is human error.

There have been many times in my life where I have found myself offering deals to my higher power.  "Please, please don't let_______ happen.  If it doesn't happen then I'll not ever complain about ________.  This is not an equal exchange, it is bargaining.  When bargaining, someone seems to come up with less than desired.

As a flawed person, I can't offer bargains. I don't think anyone can. We do this when we know something is the truth and don't want to accept it. We make offers that we mostly can't fulfill.  I don't complain outloud about lifting Liberty or about completely bizarre and erratic inability to control her pee, but I yell it in my heart. 

" I didn't sign up for this!" Or "Come on, give us a break!" And "what am I doing wrong that this is happening?" Closely following "what can I give up to stop this?"  

I believe that I can't stop or control how Liberty's disease progresses. Aside from food, pills, and potty times, I don't have control.  

I have to trust that although the road may be ugly and hard, we are loved and supported.  I don't have to worry about tomorrow, no bargains needed, as we have love and support.

 Lyme, Parkinson's, and Dystonia suck and they are hateful adversary's who are busy stealing Liberty away.  I can't bargain against evil, instead I will rejoice in hope. 

No, I am not giving up.  I will always "rage" against the progression of Libby's condition. 

Always with hope- even when it's audaciously hard. 

The Baclofen pump trial

Here's how the week went.  Tuesday was my birthday, 42nd, and it was spent in school preparing for Substitutes and getting ready for our doctor visits in Ft. Worth.  We left Wednesday morning and began the trek.  I was so proud that I had found a super cheap motel close to the downtown area.  Sitting at the traffic light, hotel in sight, we watch an exchange between a rather scantily dressed lady and three, uhmm, gentlemen.  We pull in, finally, and it is NOT okay.  I am given the key and head to go and check to see if the non-accessible room is Libby acceptable and watch the lady from before go into the room above us with a couple of fellas.  I came back out shaking my head and Rachael is frowning.  Apparently the entrepreneurial spirit was thriving in that little hotel.  We were able to get out of our reservation and not be charged since we booked an accessible room and none were available.   Luckily we were able to quickly call and find an accessible room in our price range with less "business" happening. 

 

We had to report to the Hospital at 6 am and needed to go by the Apple store to get the iPad fixed.  Went by Apple, and must say wow- wish we had money to burn, and had to set an appointment.  We all had a hard time getting to sleep. 

Rough morning, but we made it to the hospital in one piece. No water or food.  Libby has a VERY hard time going potty in the mornings, it is like her muscles are so tense when she wakes up that she cannot even let the water flow... Of course, before they could get Libby into the Day surgery room we had to have a pregnancy test.  So fun.  They tried to hand me a tinkle cup and I handed it right back!  Amazing how quickly they can get ya a tinkle hat when you offer to let them hold the cup!  

Getting the IV put in- I was ready for the Happy Juice for myself. Sad that they don't offer it for parents as well. :)   The actual lumbar puncture took less than 30 minutes and they warned us that she would be out for a long time afterwards.  This was our fourth LP and we know better.  Libby is hard to keep knocked out.  Always has been.  She was wide awake by 10:00 and they had actually done the LP at 9:00.   When we were able to go back she was a fussy, hungry, sore kiddo. 

 

I usually don't share the pictures of when Libby is miserable because it is too hard.  No one wants to know the icky side of seeking treatment and daily ups and downs.  I had a moment after she was wheeled away for the Lumbar puncture of hating it all.  Hating every minute that her illness has brought her.  Being so heart sick that there are things that my child faces that I cannot take away or make better, much less carry for her.  It is not fair that her body struggles every day and I am strong and healthy and able.  (Although I am very grateful for the stubbornness my body shows- even at my age...:))   I would take it all for her if I could. This is parenting and I have the same feelings for Mariah.  As a mom I would gladly give up whatever I have for my children.  Gladly. 

 

She had to lay flat until 11:00 and then the Physical therapists come in to evaluate how well she moves after the muscle relaxer Baclofen had been pushed into her spine.  They tried to give us a bed pan somewhere during this time and that's a "negative Ghost Rider"... At 1:00 the PT ladies were to return to give the final observations and send us on our way.  We had the Neurological consult at 2:30 and needed time to feed this kid!! After many questions, by 1:30 I am getting Libby dressed and ready to go.  PT came, finally, and we asked to see how her ability to walk is affected.  Picture tieing your knees together with panty hose, lean way over to the left, arms are lose and in full command, feet are heavy like they have lead in them....now walk.  What we didn't know is that the Baclofen into the spine stops the spasticity and takes the muscular tone from the waist down.  It was like seeing John Wayne walking with his knees glues together!  :)

 

 I finally got pushy and asked to have her IV removed and her paperwork completed as we had to get this kid out of the itty bitty area and feed her before her next appointment.  We were cleared by OT at 1:50, raced to cafeteria, shovelled food in and made it to the Speciality clinic by 2:28.  Geez. 

 

After our meeting with Doctor Honeycutt, we are even more unsure. This is the size of the Baclofen pump that we may have implanted into Liberty's mid section.  Then a catheter runs through across her body and up her spinal column.  Once the pump is situated inside the midsection, there is a metal covering that would live on the outside.  My kid would then be robo teen!  They would have to keep her in the hospital for several days to adjust the level of baclofen.  That would be a five day stay.  Okay.  Then we asked about the walking episode.  Dr. Honeycutt said the pump is great for those who are non-ambulatory, but for those who are able to walk it makes for a long battle.  After the implantation, Libby would have to work very hard to build and rebuild her leg muscles to learn to walk again.  Once she regained and retrained her muscles then she would have a more controlled walk.  Much more information and praying and thinking before we can make this step.

Both Dr. Acosta and Honeycutt said that there is no reason that Libby cannot do a long flight.  So, if Make a Wish okays Rome or New Zealand we will just have to plan for jet lag and recuperation time! 

 They also brought in a nurse who is also a patient and has the Brain stimulator's in place due to her Dystonia.  We are not there yet.  The sweet Megan is doing very well and is able to lead a normal life, working and caring for her children, but we are not there yet.  I feel like we need to seek treatment for Lyme before we do anything so invasive. 

Wednesday night we made it back to the Apple store and nearly $400 later have an unblemished IPad for Libby.  I also bought the Apple care insurance just to be safe.  Ughhh.  So much money being spent NOT in the budget...

Driving home was not fun.  A cold front was/is gripping North Texas and Libby was locked up.  Her walk as still sideways and very labored.  We stopped in Wichita Falls to eat and gave her the Clonopin- before and after eating.  This was a meal where every bite was fed to her since her hands weren't working.  Rough to say the least.  Libby's walk is back to "normal" this morning. 

Home Thursday to realize that a cat had been locked into our bedroom and then commenced the bed washing until the wee hours in the morning.  I checked the bank account to realize that we had been overcharged by $160.00 for our satellite bill.  Not happy and not a month where this would be okay.  An angry phone call later and it will be reimbursed on NEXT months bill.  Ughhhh.

I know that there will always be enough of whatever we need.  I know that I will always have enough energy for whatever needs to be done.  I know that there is nothing placed before us that we cannot handle.  I know that I am grateful, always, for Rachael's support and strength.  I am grateful for the chance to be grounded at home yesterday and today due to the cold and finances so that we can recuperate.   Glad to go and learn more, glad to be at home.   

Love and immeasurable blessings,
ileana

http://www.webmd.com/multiple-sclerosis/intrathecal-baclofen-pump   more general information
http://www.medtronic.com/patients/severe-spasticity/therapy/index.htm  From the company who makes the pump.

Beginnings

Liberty and her constant snuggle companion Jar Jar Binx.

Liberty and her beloved Yvonne Perea at our first introduction to Honey House.

One happy girl after the sophomores won the Homecoming Spirit Stick!

All three kids lounging in the super cool lawn chairs. 

I am not sure I can begin it all again.  The old Blog is gone.  I have been emailing Google back and forth and they are trying to find out what has happened.  It just disappeared.  Almost the entire duration of Liberty's saga, all of our trials and amazing victories are gone.  I am just not sure if I can repeat it all. 

And today, this week, we have much going on.  We leave Wednesday for a double appointment at Cook children's.  We are going to for a Neurological consult for Brain stimulation and a baclofen pump trial.  I am still not sure about either.  I feel okay about the baclofen pump, having the meds going straight into her system may help with her brain fog. The brain stimulator is another thing altogether. 

Liberty's Make a Wish wish is still unsure.  She has stuck with Rome being her first choice, but being unsure of the amount of travel and the distance makes this a somewhat scary choice.  Her second choice is Yellowstone.  She loves the idea of New Zealand and seeing Hobbiton, but the 24 hours plus plane ride is very scary.  It will be up to the wish granters as well as the Docs from here on out. Long plane rides and the possibility of jet lag are real ones for us when a change in air pressure put Libby to bed for over 24 hours last week.  Still so grateful.  Amazingly grateful and overwhelmed by thinking of a Wish.   I am still marveling at the fact that I have a child who qualifies for Make a Wish.  What a vastly different world this is, beautiful in its own way!

We were given an amazing IPad from a donor through TurnCenter.  We quickly bought the Speech program ProloQuo2Go and we are off and running.  We had been taking lots of pics with the IPad and the kids had made videos, in an attempt to create a personal album for Miss Liberty.   We ordered the Otterbox the same week we got it and it hadn't come in when we took it with us to see Honey House play in Lubbock weekend before last.  We waited until after everyone left to get to meet the other artists and to talk to Yvonne.  While using the IPad to get a pic with the group it was dropped and the screen is cracked.  We cried all the way home and often the next day. 

Knowing that Libby had been given something we could not afford without ever asking for it, was amazing.  And knowing that it is broken made me sick.  We are taking it with us tomorrow to the nearest Apple store, in Ft. Worth, to try to get the screen fixed.  Praying something will work out.  Managed to get the thank you gift together for the anonymous donor this week and dropped it off.  The donor received a copy of Libby's book "The Incredible Adventures of Sparkles..." .  Praying the donor knows how grateful we are and the amazing difference having the ability to push a button and have people understand our child is making in our lives.  Saying thanks is never enough.  I would NEVER want anyone to think we are not grateful, we are full of thanks, just a bit clumsy, nervous, and exceedingly tired.   

We are indeed blessed.  Beyond measure.

For Liberty's English class, she had to complete her own "Where I'm From" poem modeled after the George Ella Lyon poem.  This poem has a format that allows us all to list the required kind of word and then place them into the skeleton form of the poem. Rachael, Liberty and I worked on it Sunday before last and here it is.

Where I’m From                        9/2012

 "I am from Ivory, Sure Gel and Pine-Sol.

I am from the white house in Happy,

                which is a home just big enough for us all,

                and the garden where we labor in love.

I am from the Rosemary that Momma love

 and the Willow that grows just for me.

I am from hard work and determination,

                from Farley and Augello and Bumpus.

I am from eating stubbornness as part of every meal

                and raising beautiful, headstrong women.

From knowing I was raised to be KING, since queens and princesses really don’t get to rule,

                “put that bird down!”

and “make sure you listen to your sister”.

I am from the many hours spent serving in the church

and worshipping in the great outdoors.

I am from the High Plains, where we can our own jelly

                and make our pasta sauce from scratch.

From the blending and adopting

                overcoming heartaches and too many hospital stays. 

I am from the jewelry box where Momma keeps what she won’t wear

                -saving it all for my sister and me."

We will end my birthday evening with this thought...... every day we have to make a difference.  Every day we have to keep getting back up.

Love and light and new beginnings- even those forced on us through technological glitches...
ileana