Holiday at the ER

     We had a plan.  I had a plan.  We made the decision to make a trip our Christmas gift to our family.   We contacted  our first travel agent.  We chose San Antonio for our little family get away.  The river walk over the holidays and some sea animals are what we have in order.  We paid for the hotel rooms and tickets to Seaworld, got scripts early, doctor appointments completed, supplies delivered, and cars washed. I’ve prayed for Grandma Linda’s ongoing wound care to behave.  Shared possible itinerary with fam and embraced the excitement. 

      Due to the trip, we didn’t buy gifts for each other.  We were possibly going to pick something out while on the trip.  We were to have a little meal with Grandma for Christmas Eve, but she wasn’t feeling well possibly after adjustments to antibiotics. So, we didn’t Christmas Eve.  For Christmas we were going to meet Mariah and Derrick for a lovely meal. Reservations cancelled.  Didn’t think this minimal gifting part through very well. 

      Yesterday evening, I flushed her tube in preparation for her shower and witnessed the icky mess on her belly.  Yep.  Her tube is dislodged.   I taped the bejesus out of it, bathed the kid and started the necessary call to our doc on Christmas Eve.  Taped the tube further and put the kid to bed.  

      Libby and I checked into the ER Christmas morning at 8:15.   Remember how we were given the go ahead to have standing orders for feeding tube replacement?   Well Rachael took Libby to her primary care doctor Monday, so I could go to the Wound Care doc with Linda at the same time. The standing orders were requested this Monday.  It’s Wednesday, a holiday, so of course the orders aren’t in and approved yet.  Let the waiting begin.  

      So here we sit. Christmas morning at the ER. Trying not to embrace the guilt of taking other people from their family time today.  Trying not to focus on ugly negativity that could envelop me.  Trying not to think about the possible loss of this much needed trip. Trying not to be sad that it’s Christmas and there are no gifts for this sweet baby of mine.   Trying not to admit that I’ve messed this holiday up with these plans of mine.  Silly little plans.  

        We’re here waiting for the on-call radiologist to arrive, interrupting their precious Christmas Day.  Waiting to be able to give my kid the food and meds she’s having to miss just in case they end up having  to use anesthesia.  Level of suck-age pretty high.  And if I’m to be honest, this is all just so sad.  So sad.   Holidays are hard.   This one is so sad.  

         Right about now I could believe the universe is against us.  That continuing to fight for this damn tube isn’t worth it.   (She’s holding her weight and up two pounds as of check in at Cook Children’s on December 11.)  I really think that giving up is the easiest thing.  Good thing it’s not an option.  

        It’s times like this when I feel like banging my head and heart against the universal wall that I know the light is coming.  The light always comes to remind me of the immense love that surrounds me at all times.   It’s times like these that I know that even though right now our circumstances are so ick-worthy, I know that my God has a plan for me.   Plan for us.  Plan for this moment.  For this day.  For this precious life I’m sharing.   I just have to acknowledge the sad and turn on the Light.   Turn on the lights! 

Pic from Monday evening.   

Now I’m going to pray, cross my fingers and toes and  knock on wood to get the luck/blessings needed to get this tube in, Linda well enough, and everyone on the road tomorrow morning.  

Fa la la la la ......Merry Holidays to all of you.   And if you’re struggling with the Sad, I’ll help turn back on that Light.  Much love

ileana 

To the Bride

      The greatest thing happened: Mariah, my beloved oldest, married the neatest guy.   Driven by peace, love and finally balance, she walked confidently into the engagement and then down the aisle.  She knew that Derrick was the one, and he knew that she was his Love.  After this beautifully planned ceremony, I found myself filled with gratitude for the immense growth that brought us to this day.    

    It was Mariah and I against the world for the first five years of her life.   She was my Junior and wore all the confidence that I lacked.  A force like a tornado who could clear the room with her smiling personality.  She was the first person I talked to after finding out that Liberty was a possibility.  After being reassured that I wouldn’t be able to get pregnant several times, this was revelatory.  Mariah was by side as Liberty came into this world.  (My mom was there as well.)   

      I was and am amazed at the connection these girls have. It was during Mariah’s senior year that we saw that Liberty’s speech, handwriting and eating habits change.   We thought that anxiety over her sister leaving for college and all the changes were causing Liberty to stress in major ways.  Then within the first twelve weeks of Liberty’s 7th grade year and Mariah’s first year of college we were heading to our first children’s hospital.   

       Liberty’s health didn’t improve and Mariah, ever the loving and amazing sister, wanted to schedule her classes around therapy and other appointments.  I prayed and cried a lot then moved my beloved Mariah into the dorms. This was a very hard step to take.  In my mind I had to try to protect Mariah from what I feared was ahead. She had to have a chance at a life outside of her sister’s diminishing health. 

        Over time, it felt like Mariah and I were severed. I struggled to hang on to Libby, to work, to family, to my love and to my life.  I struggled and felt as if I had lost my oldest.  My fear of losing her fostered an environment where Mariah wanted to prove to me that she was okay.   She lied. And I believed her and lied to myself.  Her sister went from vibrant, brilliant and funny to losing motor skills daily- how could she be okay.  Now I know that Mariah was angry. And she had a right to be. She stayed angry for many years. She was angry at so much including God. Now I know that was a reasonable reaction.   

     Now I know that I failed Mariah. I failed to support Mariah in ways that she needed and for that I am terribly sorry. I failed.  Hope failed her.  She drifted and landed, drifted and landed in an almost Gypsy-like manner for years. 

        Now I know that she was grieving. She lost the sister she had, yet her sister was still here- needing her.   That’s hard.  And terrible. Completely.  Unfair with a heavy dose of sucks. 

         In Mariah’s own words: “watching Libby get sick and watching what it did to our family killed me. For a long time I ran. I ran from our family. I ran from joy. I ran from God, and I ran from Libby. I was so mad at the fact that I got to live and experience my life, that I subconsciously worked to destroy it. I lied. I hated. I hurt people.”  She was in so much pain. 

          Over more time, I found my way  to Mariah, or she found me.   It came as the blessed guise of me needing help watching Libby a couple days a week so I could work after Liberty’s graduation from high school. Since then, I have been able to see Mariah every week and she gets to interact and take care of her sister.  Watching them together is awe inspiring.  Mariah is able to get responses from her sister that I’ll never get even though Libby is now down to one syllable responses now. They communicate in a way I don’t understand- always have. 

      Mariah has continued to grow in a way that is smart, funny, hard working and most of all caring.  I describe Mariah today as my Lion’s mane of a daughter who says the things I can’t and handles her life in amazing ways.   She is the best parts of me and so much more.  Her strength is a gift and her faith is what I have prayed for so many times.   I am eternally grateful that she found her way back to faith. She is half of the amazing part of me and all of a blessed God.       As Mariah began planning this wedding she commented that this wedding was for both she and Liberty.  Her desire was for Liberty to feel the love that both she and Derrick have for her.  This is something I couldn’t even think about.  Amongst all the losses with Liberty is this fact: she will never be married or even know that kind of love.   Damn. Yet because of a sister’s strength, Liberty was included and is completely enamored with her now brother, Derrick. 

They can’t be serious around each other.   

     And this is her mom’s story of how she walked down the aisle to marry this wonderful man, Derrick Neusch, finally balanced with him. 

      After all of this, how wonderful it is to know that this woman believes in love.  And hope. And a tomorrow that is blessed. I am grateful and humbled to a be a part of Mariah’s life.  And can’t wait to see how she and Derrick change their world. Mariah says that she “found another beautiful and loving family to add to our own.”  May their union be blessed and their love a blessing to both families who are now joined.  My love, I am and always will proud to be your mother.   Grab his hand and go kick the world’s ass!   

**None of the wedding pictures are professional; those photos are on their way. 

**Mariah gave her consent over this writing and she will be the final editor.  

End of the Semester Slump

    (My thoughts in regards to parents who have children in school/college/training and those who work in the school system.  I’m certain that other professions have their own timelines when the stress can overtake us. My disclaimer is that I am continually trying to find the light.)

    This is the time in everyone’s year where we need to regroup, recoup and power through to the end of the semester.  My world has revolved around the semester based school schedule which has translated to my emotions following the biannual cycle of trying to “keep things together” through the end of every semester.  There are the stressors of studying, planning, tests, grading and maybe have a life. In the fall it has always seemed worse for me. I live for the sun. The darkness that comes with the end of fall isn’t good to me.  Whether it is a case of Seasonal Affective Disorder, stress, depression, or a combination of all, or others, these darker months make it harder for me to handle my daily stress.   

      I don’t think I’m alone.  It’s so easy to be low when you have a constant gauge of your successes and failures based on school systems.  Some students follow the same yearly patterns and may struggle emotionally at the end of semesters. Sometimes it could be a normal response to the stress involved in every semester. Sometimes it’s beyond normalcy.  

       There has been a lot of press and research coming out about the suicide ideation in students in their late teens through early twenties.  I know from my little corner of the universe that this is true. All too often former students reach our for reassurance and a reality check.   Yes, you should be tired. Yes, being overwhelmed is okay sometimes. But not to the point of not being able to function or not seeing the value of the work you’re doing.   And especially not okay to believe you cannot continue on a daily basis. These are the students and teacher peers that reach out. 

       I fear that many others don’t.  I never did until I could feel myself getting lower and lower several years ago.  My view of the daily repetition and perceived sadness of life could have completely taken me over.    I’m blessed that between Rachael and several coworkers I climbed to a better place mentally.  

      All of this is above my pay grade.   I’m just a teacher and mom doing the best I can everyday, but I read so many articles about the number of suicide attempts and admired suicide ideation haunts me.   

      What if we started marking ourselves safe from the ugliness that comes along with the end of semesters?  Like people do during natural disasters, since depression is a national natural disaster. Not that I am making light of any of this, but we need to be checking on each other.  Are you eating right? Working out? Sleeping? Laughing? Allowing yourself to cry? Are you making your lists and marking things off? Singing out loud? (These are things that help me.). 

Talk to each other and check in.  We can all use a lot more light as we head into the holidays.  Oy! The holidays are coming. Save some of YOUR light for yourself.  I will try to do the same.  

Much love,

Ileana 

Links to places with professional assistance:

https://www.facebook.com/TexasPanhandleSuicidePreventionCoalition/

https://www.facebook.com/800273talk/

Interesting articles and research: 

https://www.researchgate.net/profile/Holly_Wilcox/publication/26659984_Suicide_Ideation_Among_College_Students_A_Multivariate_Analysis/links/0deec524c5d19a093e000000/Suicide-Ideation-Among-College-Students-A-Multivariate-Analysis.pdf?origin=publication_detail

https://www.nami.org/Blogs/NAMI-Blog/January-2019/8-Ways-to-Deal-with-Depression-During-the-Gloomy-D

https://www.mhanational.org/tips-teachers-ways-help-students-who-struggle-emotions-or-behavior

And a chocolate covered face full of joy for us all-

Sandwich Generation

      This isn’t a Liberty post- at least not directly. This isn’t  even my story to tell, not really. Yet it is. The simple short of it is that my mom, Helen, is now in a care facility. And that is where she needs to be.   

         The long of it is much more tangled. After my grandmother Geneva passed away, we moved my mom to Happy and set her up in a little house of her own. We sure tried to keep her safe and happy. She would fall and forget.   Or mess up her meds-a make herself sick kind of mess them up and I couldn’t help her get and keep them organized.   Organization and plan following has never been her thing.  We knew then she needed more care. Then, she fell and broke her shoulder. That’s when my brother stepped in.

        We took mom to Garland to live with David. He and his beautiful wife, Mirtha, have been saints with her. Mom has been living in their house for three years. She has been safe and certainly had the best care they could give her.   

      Mom’s memory is going. It has been for a long time, but the worst of it is her anger. Throughout my life my mom, who is smart, artistic, caring, hard working, and loving, has been angry. Angry like an undertow that waits churning to return to the top and pull me under. Her anger rolls continuously. She’s angry at so many things and at life overall.   

         I know that often the root of anger is pain-real and long suffered pains of heart, mind and body. I have always gifted  to be able to set her temper off.  Grandma always said that we were like oil and water. The last few years just my voice triggers her. My brother is able to keep a level of emotional separation with her and can sometimes reach her rationally, but lately her anger has become focused on both he and his wife creating a toxic home environment. Rachael and I went through something similar with her, which took so much energy from our ability to care for Liberty and ourselves.   

         Recently she had a major event with her meds and was taken to the hospital. This was after several weeks of her memory and thinking skills deteriorating. Quickly. Scarily.  

          Luckily the doctors at the hospital did more tests and kept her. Gratefully, she is now in a full care facility and I think she will become more acclimated. Unfortunately, we don’t have a diagnosis in regards to her memory as of yet.                  The stress isn’t pleasant and I’m not sure how David has handled it. This is not the choice I would want if her medical and emotional needs were different. I don’t think anyone would choose to have their parent in a home if there were any other way. As soon as I got the message that Mom would be staying in a facility I was overcome with gratitude and relief. Then guilt. Because guilt is my jam.  

           David and Mirtha did everything they could, and I certainly tried. 

          We are, like so many others, the sandwich generation.  We are taking care of our children and our parents. We are not alone. Many are doing their very best to take care of their parents and their children. Often, we are lost in the middle doing the best we can.                

        Will continue to pray that Mom finds some happiness and healing, And that David and Mirtha can embrace this new life together.  

          

    Liberty is holding her own. We are nine weeks into the school year and rolling through the days.  She’s tolerating her tube feedings and continues to eat small meals everyday.   I think her weight is holding steady. I pray it is. Mariah’s wedding is quickly approaching and I can’t wait. She is well matched and loved by Derrick. I believe they will have a great life together. 

     

      Sending love and peace to all and support to all those who are squished in the middle, taking care of all.  

  

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.  

The Escape of Tubi Wan

Let me tell you about a day we had this week.  This, like so much of our life, is not for the prude, nor the faint of heart...

Beautiful Thursday morning where I overslept and missed my early morning workout.   I was off campus in the afternoon for a meeting at Amarillo College and was able to pick Libby up little earlier than normal.  (I’m always excited if I can get her early.)

   At 4:40 we arrived  at the house and since it’s a Thursday I got her into the shower and prepared her for the poop assistance she gets on a very regulated schedule.  

  Bathing Libby sucks.  It just does. It has for years.  A good shower means that she will only cry a little and be mostly compliant- a conscientious objector limp limbs and all.  A bad shower means snot and drool induced wailing to the decibel that I am sure will one day get authorities called in.  This day she was medium level crying.  I’ll take that. 

  Showers are important not only to get her grownup smells taken care of, but also because  I need this time to get an overall inventory of her body and note the changes. 

  Usually I can get her showered, onto her potty chair, mostly dried off and at least a shirt on before the poop fest ensues.  This also gives me a chance to change the dressing and tape around her feeding tube.  I leave the tube covered and taped while showering. This was not usual. 

  As I started changing the dressing I noticed  a lot of extra ooziness.  A lot.  Then I realized that there was a lump under her tape.  It was the balloon that’s supposed to keep the dang tube inside of her precious belly.   

  Her tube was out- AGAIN. I don’t know if taking the tape off hurt more or she felt her belly, but now she is ugly crying, and it is a blood and belly ooze palooza.  

   She doesn’t stay safely on her potty chair by herself for very long. I tried to cover the belly hole a little and put a  gait belt on her.  Then I ran into the kitchen and got out the emergency “tool” box.   Grabbed extra gauze, peroxide since there wasn’t any rubbing alcohol, and a straight pin.   I washed off the tube and pin with hot water, peroxide and lots more water.   

   I ran back into the bathroom where she has continued her show stopping aria- rightly so.  The ooze palooza had abated a bit and I get the belly hole cleaned up a bit.    Then I squish the feeding tube’s balloon, pop it with the pin, squish it some more and try to guide the tube back into its tunnel into my kid’s stomach.   (I didn’t have the right syringe to deflate the tube’s balloon.) 

   It took several tries,  and Libby was not best pleased.  I used my left arm to hold her left arm and torso back while I eventually got the feeding tube back.   It- went- back- in.  Pulled a bra on her, a shirt and grabbed a feeding syringe to see if we are in luck.   Amazingly, her tube flushed perfectly.  No extra fluids squirted out, and the tube stayed in!   I taped the bejesus out that tube entry point and tried to get pre-scheduled poop out of the way.   Seriously laughed out loud.   After the pooping she calmed down. 

  Right at 5:00  I had started making the necessary phone calls to her primary care doctor, then her surgeon and then the appropriate ER.  Primary care doctor said to take her in after calling the surgeon.  

   I fed her the solid food dinner that we put into the oven when we got home between getting her fully dressed, packing up pills, my school bag, change of clothes for her and her feed supplies. We were loaded into the van.  Then Grandma Linda and Jennifer showed up.   Jennifer was bringing the kids to Happy for the the weekend and Linda was coming over to help out for the evening.    I tried to explain what was happening and we hit the highway.  We were fifteen minutes north of Happy when the surgeon called back.  

  He was happy that I got the tube back in and that it flushed successfully.  As long as it works and there are no issues we didn’t have to go to the ER.  Awesome.    We turned around and headed home.    

  We were home by 5:30, and  I had a little cleaning to get done.  Rachael swims on Thursday evening and gets home around 7:00.  I’m glad she missed the palooza part of our afternoon.  I filled her in while she was on her way home.   

   I’m grateful the tube went back in and has been behaving thus far.   We are two days away from this spectacular happening, and it still cracks me up.  

   The moral for me is to not over sleep.   But seriously, Libby’s belly could have its own sitcom.  

Libby is still dropping weight, but not as fast.   She’s getting around 1000 calories a day just through her tube.  We try to get her to eat as much real food as possible.  So the tube saga continues on.   She needs the nutrition and fluids the tube gives her.   I will need to make a surgical appointment at some point to get a new tube in.   I hope we can wait awhile and let her belly hole get over it’s recent aggravation.  We got lucky this time.  Nah, we’re continually blessed.  

Love to all.  

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.