Libby’s Willow

We have bought many trees to add to our property beside the house.   Many trees.  Trees of all kinds. Whole trees- saplings- seeds- all of it.   We did research and planted another and another variety.  None of them really took.  

Until after her diagnosis in 2012, Liberty asked for a willow tree.  She wanted it because of Harry Potter’s “Womping Willow”  not because willows are my very, very favorite trees.  

This tree grew.  And grew. Flourished.  Truly flourished.  We would sing concerts to the sister tree during the summers. 

We adorned Her with fairy lights that Libby loved.  Strand after strand after strand.   Until someone cut several of the light strands, it was a gift to drive home after school and Libby would be giggly over all the fairies living in her tree.  

So, we built a fence to protect the tree and the fairies. The willow with the fence. 

In the spring of 2021, I noticed that her tree was not leafing the way it had in the past.  I refused to talk about the decline of Libby’s tree with Rachael.   Refused.   I didn’t know why then.  

Now I know that the tree was telling me what my heart couldn’t handle.  That damn tree was still hanging on this fall with only a few branches clinging with any leaves to offer to the fall.  

Just like her tree, Liberty is stubbornly hanging on.  Today, January 28, is the tenth day that Libby has refused food and water.   Her beautiful heart has been at race pace for days now.   She is beyond tiny.   She is no longer responding most of the time.  Her body is done- her heart isn’t.   

She’s still pushing against the wind. 

https://music.apple.com/us/album/against-the-wind/1440879556?i=1440880091

We’ve told her it’s okay.  We will be okay.  Blessedly, so many have come to tell her she can go.  Yet, she’s holding steady.   Her Grandma Geva and Papa are waiting.   Damn these stubborn genes.  

This is terrible.  Grateful for the time.  For me, this level of decline has helped me reconcile letting her go.   She has earned her Liberty ten fold.   

In God’s Time and Libby’s Stubborness

Going through this hospice process with Liberty is beautiful and yet terribly hard. It’s a lovely chance to cover her in love, and yet, it’s hard. Watching her body decline is terribly sad.   But I prayed Libby into this world, and I will continue praying her out of it.  

We met with our clergy last weekend got  her Celebration of Life and Home going planned.  So grateful to have that mostly done. 

We wanted to be in school long enough to get our students back into the groove of the day to day schedule.  I found myself anxious to get to school and anxious to hurry and get home. While at school I cherished the time with my students and yet, wanted lots of updates on Libby.  My heart was stretched to want to be with both.  

Here’s one of Libby’s favorite songs to lighten this update: https://music.apple.com/us/album/piano-man/158815463?i=158815547

This week several things fell into place: teacher volunteers to cover recycling, Care Closet and Snack Shak for our campus and the right people to cover my classes.   (Cannot tell you how much I’ve worried about making sure the people who need the food get it while I’m out.  It’s going to be okay.)

Every day for the last two weeks she has changed in some small manner.  As of Wednesday, the 19th, Libby is refusing food.  She is also declining almost all liquids.  Thursday she would not even take her crushed pills for me.  (I was a bit dumbfounded.  She refused anything from me!  The nerve…) 

For the last three days, she is no longer taking  her meds five times a day. She is getting her seizure med and a small

Relaxant.   That’s all. My days are completely off.  That five time a day schedule has been engrained in me for over 13 years. I’ll need to get retrained. 

I believe she has had her final shower as I’ll move to giving her bed baths.   So many of the  Caregiving activities, like showering and shaving, are more to make me feel comforted and needed, not because it’s vital for Libby. I can let some of that go. 

I know this is part is all part of the Hospice process. It is not about our typed out timeline or our expectations.  It’s really between God and Libby. I can envision the back and forth arbitration  happening. Libby saying, “I’m not ready” and God replying, “you can have a wolf at your side every day…”. Or “I’m ready” and God responds, “not yet. It isn’t time.” Either way, I know there’s some push and pull going on.   I mean- it’s Liberty. 

Liberty is the epitome of STUBBORN which I say with a smile. It’s partly her stubbornness that has kept her here with us for so long.  Now she is in negotiations and whoever “wins” won’t really matter.  We will love her out as fiercely as we have fought for her. 

Starting Monday we are home with Libby.  I have very few days to take, but  I’m not going to concentrate on that aspect.  Right now I am right  where I need to be. Being with her is vitally important right now. 

Thank you all for your ongoing love and support. 

The Veil

I dream.  I don’t know that I’ve ever dreamt this much, or maybe I am just remembering them more. Or I just want to remember. 

 I’ve continued to sleep with Libby, probably as much for me as it is for her.  Some nights we sleep hard straight through.   Other nights she moves and kicks and fidgets all night long.  It’s like trying to sleep with someone break dancing; that’s an antiquated reference.  It’s taking more and more to knock us both out.

I had one lovely dream of Libby in her fragile little body of today, except her body is working.   She is dancing.  Now she has always been a waltz in a world of two-steppers.  She is dancing in her cowboy boots. She is dancing to a rhythm no one else could ever hear.  Happily stomping in her own way doing her “happy feet” moves that are completely her  own. 

She has this authentically perfect way of ignoring the rest of the world and just dancing.  The only thing in this dance is that she is confused.   She’s looking at me and asking “what’s happening?” More Liberty dancing then “Mom what’s changing?”  Then she was moving those fast little feet again, and I woke up talking nonsense out loud with wet cheeks. 

Three Saturdays ago , Libby giggled throughout the night. Seriously- giggling. The kind of happy, care free little girl giggling that is rare.  The kind of uncontrollable bubbly giggling that cannot be contained. She was giggling and then  would clearly say, “yea” several times.   She was even shaking the bed.  She giggled through the night and into mid-morning.   

I asked Libby what was so funny and she’d get quiet and go on sleeping.   She was sleep laughing. 

It was so random that it was both deliciously creepy and sweet. Luckily, Rachael heard it as well.   Later that evening, we were telling Grandma Linda about our “Giggler”.   I asked Libby what she was laughing at- more giggles.  Then I asked her WHO she was laughing at.   She got serious.  I went down the list of names: Sister, Jasmin, Xavier, Rachael, Betherty, Uncle David, and Jennifer,  to no response. I had a silly hunch, so I asked  if Grandpa Terry was telling her his corny jokes and she said “yes” in the most clear voice.   And she giggled some more.  

 

Don’t know about many things, nor do I understand many things, but I know the love we share in this life bridges to reach the other side. 

It makes my heart smile to think of Terry whispering his goofy “Dad” jokes to Libby. 

What a gift.  My friends this is hard, heart breaking shit, but she continues to bless us with glimpses across the veil.   Some days I feel as if I will suffocate from the weight of it.  Then she giggles or tries to reach out for me.   And I take a breath and keep going.   

Thank you for reading and supporting us.   We are blessed. 

God’s Participation Medal

We make plans and God laughs.  Belly laughs.  Please

Don’t take this to be sad; we are learning and growing as we go.  I am always grateful to be able to mother and teach.  Always.  

The Intro:

We finished. We finished the school year.  We crafted beautiful relationships with our students and peers.  We navigated teaching with a mask, cleaning between every class, virtual learning, changes in state tests, taking state and national tests, many, many students and staff being quarantined, and a move across campus to a new classroom. 

We finished and I am  a worn out dish rag during canning season.  We finished and yet so much is still unknown. Living in the unknown is okay.    

Everyday seems to bring new challenges and new lessons.  I learned that working on the relationships with my students and peers is the most precious part of my job.  I also learned that all of the Pine Sol and Fabuloso was worth it.  I don’t feel like I was half the teacher I normally am this year, yet I pray my students felt safe, loved, and heard.  They’re going to be okay. 

Finger Update:

Libby’s finger is still healing from her venture into cannibalism (I know, that’s not appropriate, but funny).  She’s wearing the Mit of Shame everyday to protect her left hand.  

That giant white pillowy thing is her Mit.  It’s not perfect, but it’s working.  Her hand is  going to be okay. 

Van Update: 

My lovely Toyota van has been totaled.  I signed the release papers Wednesday, cleaned it out, and said farewell.   The front end damage was too extensive for insurance to fix.  So, it is gone.  It’s going to be okay, not the van, but we will be okay. 

Libby’s rotating seat lift is also totaled.  I cannot move the seat with her into a new vehicle for safety reasons- even though the seat itself wasn’t harmed.    It’s been in a wreck.   That’s a huge loss and getting it replaced is close to $10,000.   All the insurance companies involved are not sure they will pay for the replacement.   It’s going to be okay.  

There is also a deficit of appropriate vehicles for us to buy.   Finding a van or SUV that can accommodate Liberty’s very specific needs is difficult.  She needs a door that will open very wide or is a slide in.  Her body doesn’t always bend and  her legs may not fold while getting in the vehicle.   (I’ve been doing a modified version of the “Cop Dip” to get her upper half into our rental which does work, but it’s hard on her body and hurts.)   

The rental goes back tomorrow after over three weeks.  It’s going to be okay.  

I struggle with letting go and letting God be in control. Often,  I think I have a plan.   A big Plan. I’ve gone through all the what if’s and possible road blocks.  I like to think through the ifs and buts and oh no’s of any change.  I create a  plan and begin to believe in how it will work. I made a plan.   I had a plan and God laughed.  A career changing plan. 

I prayed since last year to be ready to leave the classroom and move up into curriculum work and leadership.  I prayed to make me feel ready.   I prayed to be ready for challenges.  After 18 years teaching, I was ready.  I submitted the necessary paperwork and was in the race,  but it didn’t happen.   

I was passed over.  Not hired.  Not enough. Just not.  

And God laughed- gently. I don’t carry fear around as my faith allows me to let that go.   But the bitterness and hurt I gained after the rejection, has been a Military size ruck sack through my days.   All of the insecure doubts were dangerous hitchhikers to my  daily life. 

What could I do better? 

What am I not doing?

What do I need to learn and change?  

What did the other person do  better than what I do?

Why not me?

Passed over. 

Not chosen. 

Not enough.  

Finally, I went back into prayer as bitterness is a poison.  After a timely conversation with two amazing educators who are also people of faith, I was able to find some perspective. 

I don’t think we’re supposed to try to make these big plans without taking our ideas to our God.    I wanted a change and move up.  I wanted a break from teaching because I am tired.    I wanted a new challenge.  I wanted. 

God has plans for me.  There are other races I’m supposed to be in.  This was my third attempt to move out of the classroom.  Don’t think that’s the plan.  I’ve come to peace with it for now.   I learned more about myself and how I lead through action and not words.  No matter, I am blessed to teach and serve students through my current position and I know great things are coming every day.  

And I have the swanky participation medal from my Higher Power.   We make plans and God just laughs as they have plan in place for us that we can’t see.   So we put our name in the race that we want to win in and God gives us the participation medal to acknowledge our growth, not our follies.  Winning isn’t about the big medal; it’s about the growing in between.   I’ll take this lesson and carry on, placing this new trophy in my shelf.  God laughs.  We make plans, and we GROW.

https://music.apple.com/us/album/masterpiece/1174317441?i=1174318362

Be blessed and know that you are a masterpiece; a single piece made from a Master. 

New Balance: Lagom

Rachael and I returned to working in the brick and

mortar classroom on our campuses. We have been

training, collaborating, planning, and researching.

We are organizing, cleaning out, and arranging

student seats. We are re-imagining, re-learning,

re-trying, and re-tooling education. We are comparing

masks and how to keep our glasses from fogging

and our nostrils from drying out.  This is a relentlessly

stress filled, overwhelming time for teachers and yet

it’s exciting! Nevertheless, it is good to be on campus

with my peers preparing for my future Loves to join us.

My fellow teachers, administrators, and staff bless

me every day and make me a better person. 

The flip side of this is that I am not with Libby every

day now.  I am at school and she is either with Mariah

or Jennifer depending on the day. This is hard as I have

not ever had the chance to spend this much time with

either of my children. I have spent my parenting years

working at least one job and going to school for my own education.  I lost a lot of time with my girls.

The last five months have been challenging

and a great blessing. I didn't get to see Mariah as much,

but we were able to talk more. There are many other words to convey what this time meant for me, but words fail me.Truly a stressful godsend to have that time with her.  She is now up several pounds and has filled out quite a bit! She is even wearing some adult-sized clothes again.  

After her drastic weight loss a year and a half ago, I went through her clothes but held on to many that I hoped she would gain back the weight needed.  That alone is wonderful as we have scaled back on the number of tube feedings she gets in a day. She got her tube replaced last week and we were lucky to get her in when we did- right before the tube popped out.   I'll continue to monitor her intake and struggles with Parkinson's swallow to adjust her caloric

intake as needed.

The stress is real in the land of education. The level of uncertainty as we create new norms in education is real and overwhelming. The cognitive load is great and overwhelming. Yet, we will preserver. We will learn and adapt and do what is needed for our students, parents and peers.

Beautiful teachers stay strong. We can do this.

To all reading this please that you are loved and are worth far more than you know. 

Ileana

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 

Just like that

We’ve finished another year of teaching.   It’s amazing how long the days are and how fast the weeks go by.   Each year I think I cannot ever love a group of students as much as I’ve loved this one. No possible way.    Then I find that I can love  more.   I struggled so much this year with my own defeats that I wasn’t sure that I had made the relationships with my kiddos that I have in the past.   I was wrong.  It is a gift to have so many young adults care for you.    A true gift.  That’s part of what we cling to during the darker days of the school year.  

   I view the glory of the end of this year with tinted lenses. Several of the students that Libby went through school with have graduated from college. This really hit me yesterday, last day of school,  as I went to give Libby her 6am feeding and start getting her dressed.   Her feeding tube was out- again.   Last day of school when grades are due and mandatory check out procedures have to be completed.   That didn’t matter as much as desperately trying to coax the tube back into her belly to avoid the trip to the ER.  

    Called  our head  secretary Becky, who is amazing, and told her the funny news that we’re heading to the ER instead of school. Not funny, but you gotta laugh. 

 The attending doctor couldn’t get a feeding tube back in as the track was already closing up.  So off to radiology we go. Luckily Liberty feels pressure around her tube, but not pain. So grateful for that.  I had to look away several times as they had to stretch out the tract to get the new tube in.  Brutal.  

      I would give everything I have to take even a part of her conditions away.    If only it worked that way.   

      Don’t know how many more times I’ll be willing to put Liberty  through procedures like this.   The feeding tube is keeping her weight steady for the most part, but she still loses a little weight at every check in. It is necessary to help her get the additional nutrients she needs.  

     

Here’s the epiphany: while her peers are getting married, having babies, or graduating college Libby got a new feeding tube.  Could spend a lot of time being sad.   Instead, I have to acknowledge that and move on.   I have nothing but happiness and love for her peers.  Hope for where they are going and their our journeys. For us, this isn’t the life we dreamt of for her.  No parent would wish for this.  Not the life she asked for either. But it’s the life we have.   We are grateful for the days with her even the hard ones.   We are all changed by Liberty and her conditions.  All of us.  Our goals and priorities are different.   Everything is different. And that’s okay.   

   It’s okay. Sometimes it’s heartbreaking and sometimes it’s heart-taking, but this life remains beautiful.  And better than I could’ve imagined.  

That Feeding Tube Life

 Greetings from the between land of the holiday break after the holidays have passed.  This grey area is where the greatest of naps and movie binges flourish.  Our plans of eating, napping, painting, reading and working out were decimated when we discovered that Liberty had pulled her tube out sometime in the previous four hours.  She pulled it out.  Out. Leaving an opening straight into her stomach.  

We made it just shy of six weeks with the original tube. 

   First, know that I am not squeamish, but the sight of her feeding tube hole without the tube was unsettling- to say the least.  

   Second, didn’t really know who to call first. 

   Third, my need to cry and gag simultaneously was only overpowered by the sheer will to not puke on my kid. 

    Fourth,  trying to follow the surgeon’s advice and insert a straw into the hole to keep it open was not successful.  It just wasn’t.  Will be getting some smaller straws to keep just in case.  

    Fifth, realizing that there may not be enough tape on earth for me to feel confident that the F-ing tube stays in place is real.

     I had decided  to keep track of the many places I would be feeding Libby by taking a picture of each location.  My belief that this tube would not hinder our many activities remains solid; I’ll be much more aware of the downside of feeding tube life.   There are so many more things we want to do and continue to be a part of .  

     Here are some of the pics I’ve captured in the last six weeks.  

Restroom at Street Toyota whole the van was getting serviced. 

Pain doc repeat

Feeding after a swim. 

...Snack Shak

...Ronald McDonald house

...in the van.

...High Plains Food Bank

And in my classroom.  

We’re currently discussing names for this wonderful tube that has so much power over our lives.   Some of the current faves are:

Tubi Wan Kinobi

Freddie Tubar

F-ing Tube

Feel free to add your own ideas.  

 Now we’re going back to the land of grey bliss to breathe and cherish these last few days. Thank you all for your prayers and laughter as we traverse this tubular life. 

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 

Feed

We have made it through another busy and somewhat hectic October. I love fall and the changes it brings all around me, but the grueling pace we set at the beginning of a school year often becomes a prize fight during this month.  The sheer amount of wonderful opportunities we’ve had to be with loved ones, work towards our goals,  serve our community, and kick the booty of our never ending to-do lists is astounding.   And we did it. November welcomed us in a surprising way. 

For the last year Liberty has been steadily losing weight. We have altered her diet, moved to soft foods, increased the thickness and calories of her liquids, and chosen to pulverize every meal she gets.  The amount of calories we can get into her body is not enough.   Her spasticity and the dystonia storms cause her to burn through whatever calories we can get in.  

This  battle is waged against a jaw and throat that has been attacked by Parkinson’s.   I call it her Parkinson’s swallow; doctors call it dysphagia.  Libby can’t tell how much she’s chewed what’s been placed in her mouth.  She will chew air like a boss, and then swallow another piece with any chewing- luckily her food is all mush.  Each meal wears her out.  Then add to that her lack of desire to eat at all and you get a battle for every meal.  Every single meal is a fight.  It’s ugly. I’m not the mom I’m supposed to be during meals.    

Several of our docs have brought up the feeding tube over the past years, and I’ve discounted getting this invasive procedure as she was still eating.  Since August Libby is down around 15 pounds.   15 pounds that she didn’t have to lose.  She’s under 100.  To me, this is emergency level.   

I got her an appointment with the local doc, told him what we believe she needs and he did order the swallow study That was completed two weeks ago. Since then we’ve played some Olympic level phone tag with several doctors and got to meet a pain management doctor who is lovely. 

Thursday I received a confirmation call for Libby to have the gastric tube placed Friday, 11/2, at 6am.  We were there. Did all the stuff.  They took her back. Less than an hour later a new doc came back with mixed news.  

Libby’s bowels were inflamed and her liver was in the way.  Partially because of her somewhat contorted body due to dystonia.  Her back is shifted so then is her torso. The doctor suggested that we reschedule and do the same placement procedure with a CAT scan for guidance.  That means we lost a day as did our family members who were there on such short notice.   I would rather be safe, but was still saddened by the loss of opportunity to get the nutrients into her body.   I’m telling myself that this was a training run.  Just a little practice.  

So, we’ll schedule again.    Praying it will be soon.   

The irony here is that we feed people.  Lots of people.   It’s natural for me.  There’s a reason that I serve through Snack Shak, High Plains Food Bank, Snack Pak and Key Club’s efforts to honor the campus; I believe in the beauty that happens when food is shared.   Yes, while I’m feeding so many others, my Liberty is diminishing everyday.   It’s a sad irony.     Praying we can get into an operating space soon.   

Much love to all.

Ileana 

High Fives and Hugs

    Recently we spent a chilly Saturday morning serving at our local Buddy Walk, which benefits people with and supporters of people with Down’s Syndrome.  This is one of my favorite groups to work for and support because there is palpable joy within their community.  

     There are games, bouncie houses, face painting, dancing, and local businesses there to bring a smile, advocate and share. 

     For the last few years the volunteers have lined up along the walk route to cheer and high five the families as they complete the walk.  There were at least a hundred volunteers lining up to chant, cheer, high five, and hug the families and participants.  

       This is the best part.  The most important part to me.   For me.   Every year it is the family and supporters of the wonderful people with Down’s Syndrome that I am captivated by.  

         This year I saw more new moms than ever in the family line up. Maybe I just haven’t noticed before.   There were several families with babies who have Down’s that passed amidst our cheers, and I noticed one mom crying as she passed.   Then another.   By the time the third family passed with a little blessing triumphant in the stroller I was bawling.   (I don’t cry very well.  I know it’s an issue- a dam that needs to hold.). 

      Ugly crying. I excused myself for a bit to get myself together.   I realized I needed to cry with them.   They have a beautiful and hard life ahead, and I somewhat understand the overwhelming fear.  Understand the joy.  Understand the desperation and need for answers to questions they don’t even know to ask yet.  

       I believe that at some point every parent needs to feel a community cheering them on, ripe with high fives, smiles, and hugs.   Many of us get overwhelmed and fearful.   More so those with children with needs beyond the normal.  

        In these beautiful moments, I realized that what so many of us need is some cheering on. Don’t be afraid to tell a parent, family member, caretaker, etc that they are doing amazing things.  Tell them that every minute of every day may feel like a test, or the final leg of a gauntlet, yet they’re getting through.  They’re doing it.  Tell them.   Cheer them on.    Don’t be stingy with the high fives and hugs. 

         We all need them.  

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 

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.  

               

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.   

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.