Embracing the Ugly

There  is “ugly” that every parent, or caretaker, has to deal with.   Ugly that demands attention and is pertinent to the life of our loved one.  Ugly that has to be heard, seen, researched, debated against, dolled up, dressed down, and finally dealt with.  

Can’t ignore this kind of ugly. Nor can you hide it or hide from it.  If I would have known how hard it would be to have Liberty cared for I would have started earlier. 

This part of the job of the parenting gig is not discussed as often because it isn’t easy, or fair, or joyous.   It is hard. And it sucks.   This week we went to an intake appointment with another government program.   Here is the issue: there is no place for Liberty to go during the day that is a professional care set up, aka Adult Daycare.   

Ick #1- I started making the calls and paperwork in April. There is one place and the waiting list is five years deep.   In order to get Libby’s name on the list we had to go through the appointment this week.    The appointment required a full history,  copies of our Power of Attorney ( they prefer Guardianship),  medical information, and intellectual/emotional testing.  

No parent wants to sit through an exam where it is stated, or you have to state, what your child cannot do. Or what she can no longer do.   Ugly.  In this scenario, Liberty has to be found to have an Intellectual or Devlopmental Disability, IDD, in order to be considered for the next level of programs.  The IDD has to have been diagnosed before the age of 18, so the progressive degenerative nature of her conditions are iffy.   She is a different person today than she was three years ago.   Her body is VASTLY different.

 The term used directly after the testing was “profound” disability. 

Ick #2- We live in the wrong county.  If approved, Liberty could be put on a waiting list for a place Plainview which is 45 miles south of our home.  We currently drive 40 miles north for my job.    We could move to change her address.  Or just change her address.  I asked about getting a waiver since we commute and that isn’t allowed.  

Ick #3- If approved Libby could be moved up the list if we would check her into a nursing home for 30-60 days continuous.    Uhm.   No.   

Ick #4- If approved it was suggested that I start considering a Group Home with other people with IDD.  

Ick #5- If I weren’t working she would qualify for a shorter lists for the Group Homes.  The struggle for me to hold tight to my career, my beloved teaching, gets more real every year.  

Ick #6- More cuts to health insurance for the chronically ill/ disabled are coming.  Liberty is covered by my insurance and disability insurance which is still not enough in this state.   I pray for those that only have disability. 

Profound underestanding for this mom is that there is a black hole of need in the Texas Panhandle for daycare for younger people with disabilities.  Don’t need fancy or shiny, just a safe and happy place for Libby to go to have fun and be safe until my teaching day is over.   

Here’s the kicker, there are funds that will pay for this kind of caretaking, through several programs.   But there is not enough places willing to open their doors to Libby and many others.    

Yes, I understand the difficulty that would come with taking care of many individuals like Liberty.  I get it.  We were reminded during our intake this week that many parents find it easier to stay home with their adult children with disabilities. Yep. That’ll wipe that ugliness off and make it all pretty again.  

Since Liberty’s illness struck I cannot count the amount of times someone suggested that I just stay home and retire from teaching.   Too many.   That would be easier for some families, but not for us.   If it becomes a medical necessity then it might be a consideration, but that is a heckuva long way down the road.   I will not wax poetic about my passion for teaching because I won’t demean the passion I have for being Libby’s advocate.  Nor will address the guilt and pure anger I feel when the easiest thing for everyone seems to be me not working.  Because there is this:

Liberty under her willow tree. 

Also enjoying a concert in the Amarillo Botanical Gardens. 

 

Please don’t think I am whining or complaining just putting the ugliness on display that I have encountered as I try to navigate the world of taking care of a Liberty.  Many of us struggle with various parenting/caretaking issues that cover everything from sassy talk to video games  to bad grades.  All are on the spectrum of trying to make sure the people we take care of have the best life possible.   

Would we be a closer society if we admitted that we are dealing with some ugliness in our caretaking world and sharing what we’re learning?  I believe so.  I believe that only through acknowledging what is ugly in my world have I learned to truly embrace the magnitude of the beauty.   And there is immense beauty.   So I’m sharing the ugly knowing that only time, research, and unicorn glittered blessings can guide us.  

My beautiful girls. 

It’s okay to not know what to say when someone shares the ugly they are  dealing with.   We all have our own.  

I’ll update as soon as more information comes in.   Blessings of hope, love, and light for you all.   

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 

Onward.

Happy March!

The days seem to just roll on by.  Since Liberty’s art show and birthday celebration we have pushed through the weeks and made it past Spring Break.   

Gratefully some of the fruit of our efforts and the kindness of others have enhanced Libby’s life.  Using the proceeds from any art that was bought and a generous donation we were able to pay our portion in getting this transfer chair.   It will be a day chair when we’re home and allow us to transfer her straight into bed when needed.   

I am so very grateful to everyone who made Liberty’s birthday and art show a success.  Thank you.  

The chair is named the BEAST.   



Pretty swanky chair. 



Dyron Howell from Snack Pak 4 Kids bought one of Libby’s art pieces and  has hung it in the warehouse.  This organization is such a blessing and continues to make our lives better.  

Libby at her art show. 

The gorgeous cake Grandma Linda made. 

  We go to the urologist tomorrow for some not so kind tests to see about her urological status.    

Please know that each of you is a blessing as we continue to get through everyday with more smiles than frowns and sharing our joy where we can. 

Be blessed.  

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.   

Eight Years

        A brief and mostly complete history.  What’s been left out is the laughing and praying with splashes of gnashing and wailing.   

        2007-Liberty was normal and healthy through the age of nine. At this age she had three seizures starting that summer and ending within that year.  The first one was the night after we arrived home from a family camping trip to Southern Utah.  

        2007-2009 lots of tests in Amarillo, and then Lubbock, to verify and find the cause of these seizures.   They simply went away as many undiagnosed seizure disorders do in preadolescents. 

         Life rolled on ebbing and flowing through her upper elementary years.

        2011- In the spring we noticed Libby’s handwriting getting harder and harder to read.  We also noticed that her speech was changing.   We assumed that she was lacking confidence as her world was changing; the  loss of her grandfather and her sister getting ready to graduate. 

          We got her into voice lessons and really started paying closer attention to our little one.  

        2011- In the fall she passed her physical fitness test, and her yearly physical.   She started her menstrual cycle. Life started our great.  

          She starting stumbling and falling.    Was sneaking the bendy straws and spoons with her lunch.  Her handwriting was mostly illegible, and her grades were low.  Her locker and backpack were a complete mess.   We requested testing for learning disabilities thinking that those seizures could have messed up her wiring.   Or something else.   

           October 2, the diagnostician called on my way home. She had completed the testing and told me that she believed there was something medically wrong.  We were encouraged to take Libby to a doctor.    We did just that.  

             Libby collapsed walking home from school.   Neighbors witnessed the fall; her legs quit working.  Fastest drive from Caprock to Happy ever.  

             We went from family doctor, to NWTH, to Lubbock Children’s for lots of testing and no answers.   The Lubbock doctor said he didn’t know what was happening, but it was severe.  Libby’s motor skills were degenerating as if she had a traumatic brain injury.  We were referred to Cook Children’s in Ft. Worth.  

              Libby was no longer feeding or bathing herself.  We  were helping her dress.  She couldn’t be left sitting alone.  

             November- first visit and first round of doctors scheduled a few basic tests and scheduled us to return in a week.   We did.  We drove home, and decorated our house for Christmas.    I didn’t want to return home and not have that tradition glowingly greeting us.   

               Libby was checked into the hospital and there we stayed for ten days.  A few things they  tested for were: MS, ALS, HIV, cancers, Huntington’s, Wilson’s, Cerebral Palsy, and Muscular Dystrophy.  Tests done included lots of blood work, scans, lumbar punctures and a liver biopsy.  

             Libby continued to lose more and more of her faculties.   We were released with no answers about what was happening, but lots of info about what she didn’t have.  The doctor told us to get her baptized and prepare our family as they didn’t know what was happening.  

            We drove home on Thanksgiving Day.  Ate chicken nuggets from an Allsups.  

         We tried to keep her happy, but she a little wolf girl in captivity.   She does not flourish in the hospitals. 

             One test was completed in Amarillo on order from our new doctor: eye scans. It was the eye doctor who also tested for Cat Scratch Fever, Rocky Mountain Spotted Fever, and Lyme.   The Lyme came back positive. That is and remains the only positive test result we have ever received.   There was never a bulls eye rash, nor flu symptoms. 

 

           2017- November finds us clinging to our little one. She now has the neurological and muscular diagnoses of Parkinson’s, Bladder sphincter dyssynergia, 

dystonia, spasticity, ataxia and speech apraxia.   

 

            She has been on a five pill a day schedule for years; her main one is the Parkinson’s drug.    She has a baclofen pump, as of last Thanksgiving.   And Deep Brain Stimulator which we charge about every other day.    

            We’ve tried lots of things including physical and occupational therapy, clean eating, weighted blanket, and even blessed water.   Libby’s body continues to stiffen and struggle.  

         This Thanksgiving I will cook all the stuff and put up all the decorations.  I may even run the turkey trot.  I will relish every moment of this time.   This is the first time in these eight years that we haven’t been going to or driving back from Ft. Worth. The first time.  

           Nothing is promised.   Sometimes bad things happen for no reason.   Everyday we are blessed.   This is our bonus time with her and ourselves.   One day we may know exactly when she got the bite or where, but I doubt it.  I won’t hang my hat on that kind of answer.   Instead, I will focus on how well I’ve taken care of her and how happy she is.    

             Be blessed and realize your blessings.   Love you all. 

            

Stretching

Hugged between Halloween and Christmas, November has been a rough month for us for many years.   Every year we have had surgery, scheduled and unscheduled appointments in Ft. Worth off set to our classroom responsibilities.   November brings us both Rachael and Jasmine’s birthdays and of course Thanksgiving.  

This year, this semester, the past thirty days have been exceedingly stressful.  Ongoing issues with Liberty’s health coverage and missing or wrong or late paperwork has caused  parts of my world to come apart.   For over three weeks our attendants were not being paid.  I didn’t know from day to day whether or not the attendants would be able to take care of Libby so I could go to work.  Stress.   

Here’s one truth: there is no place for me to take Liberty during the day unless it we take her to an individual.  There is no “day care” for Libby.  Another truth: she can’t stay home everyday as it would not bode well for her health.   Think of anyone you know who is disabled and how quickly their body devolves once they begin staying home everyday. Libby, like many others, thrives on her interactions with people.   We have to keep pushing her to keep going with us.  

Libby has never been stiffer.  She is getting her relief pills before she gets out of bed as she is so stiff that I struggle to get her clothes on.  Her DBS battery checks out normal and everything that we can control is normal.   We know that the effectiveness of the Botox she has been getting for years is waning.   As her conditions progress we are to expect her be more and more rigid.  We have to keep her moving.  We go

for a visit in December.      

Two weeks ago we lost the amazing Tatum Schulte and Brandi Wilkinson.  The very young and brave Tatum had been battling cancer for several years with a bravado that is hard to find.  We didn’t know this young lady except through prayer chains and awareness posts.  The ever talented Brandi was a student of mine who I loved dearly.  Dearly.  She was a part of a very special group of writers who were in our Spoken Word poetry group.  The loss of these young ladies hit me in ways I can’t explain.   There is no rhyme or reason when these things happen.  We have been blessed to keep Libby with us for many years past what the doctors predicted.  Continued prayers for these families and friends. 

So, I’m not sure if hugging November is in order for me or not.   This year we are home for the big Turkey day- knocking on wood.  Want to run the Turkey trot, watch the parade, bake all the stuffs, eat a lot, and laugh with our beloveds. Want all the Christmas stuff up as we finish this semester.   Want to do, feel, see all of it. As we are surrounded by immeasurable blessings, we will be pushing the stressors away.   Knocking them down as we keep going and going.   Not only do we have to, but we GET to keep stretching ourselves.  That is part of our truth.