New Loves

I

   If I said that teaching was easy and that I always felt successful at making my students successful, I would be lying. Every period, day, year, and especially every student is different.  Last year I came very near to giving up.  I felt as if my heart couldn't keep going. 

  Getting Libby through her senior year following Deep Brain Stimulator implants, Grandmother falling and moving to a nursing home, my Mom not dealing with Grandmother being gone at all, new teaching position for me, and more stressors that I can't list made the last school year a challenging one- to put it lightly.

 

  I lost both of my Grandmothers within a six month period, moved my mom into a house of her own, the complete detachment of family members, loss of friendships due to work stuff- too much loss. 

  But what I gained was a chance to be schooled by an amazing group of students.   Every year I learn so much, this past year I was changed.   This year I was schooled.  This group of students had been with Liberty since her freshman year.  They made her their Queen and changed many other lives in the process. 

  

   Liberty has now completed her first week of college and everyone survived. 

  At our first Pep Rally on Thursday, I realized that the new group of students  I have are mine and will continue to teach me, as I will try to teach them. 

  

  So, I took down the Hall of Fame pictures from last year. I took them down because they are moving on. They have their wings and need to go forward. Their pictures will live with all of my other past loves.   

  I can't ever close a door to a student, it's my job to help them open many.   Much love and belief to Class of 2015- go and be extraordinary! 

Joy and promise to Class of 2016! 

Gettin' schooled

The time is almost here. In just a few too short days school will be back in session.  I am ready to meet my new loves. Ready for the chance that every teacher gets to start over.  Ready to make a difference. 

Despite all the calls and appointments there is still so much in the air for Liberty. Her transportation, her attendant care agencies, and her newest doctor.  I wanted everything ready before her college years begin.  No such luck.   Letting other people take her, even though they are amazing and loved?  Ughhhh.  Isn't this the same issue that all parents face when it comes to sending an adult child into the world? 

Deep breath.

This morning we met with a Urologist.   There are a few things that we keep very close when it comes to Liberty's struggle.  We have tried to keep her dignity and  "princessness".  The inability to potty as needed and predictably, one and two, has been an issue for a long while.  We have a potty schedule and try to get as much fluid down as possible, but remember that she doesn't swallow well so drinking is difficult. That means that her fluids are thickened by additives which cause other issues. Frequency and unpredictability added to her constant fear of falling, especially in new bathrooms makes for greater challenges.  So, we have been waiting to see this new doctor since June.   

<http://www.pdf.org/en/spring07_gastrointestinal_and_urinary_dysfunction_in_pd>

Libby will be going through several tests in September and we will go from there.  Our goal is to keep her basic body functions working so that she has as much of a normal experience as is possible.  

Jennifer, Mariah and Grandma Linda have done an amazing job practicing to take full care of the Princess of Enigma. I am grateful and I wish I had more money to pay you what it is worth.   And Mariah, I have tried very hard to keep you active in Liberty's life while not having you be your "sisters' keeper". Yet, I am grateful that the schedule between your classes and Libby's will work out. Jennifer and Linda, it amazes me how your schedules and willingness coincide with times when Liberty needs help. 

I am allowing  myself a little more time to be on edge and worry.   My kid wanted to be in a dorm, she wanted to "go off to college" with her friends, and be independent. That is not our reality. 

 I have to keep in mind the blessing that Libby is here and has a chance to go to college.  She has a chance and I will make sure that she gets where she needs to be.  

I know that as long as we are doing what we should everything will work out; I'd just like a few more ducks in a row and more of a coherent plan in place.  We are trying.   We are damn sure trying. 

Meanwhile, I'm just a mom of an incoming freshman who is starting college and I'm supposed to let go.   (For this picture I endured a lot of whining and had to implement some bribery.) 

Picking up bricks

I'm at I have been privileged to spend three days in Austin surrounded by brilliant minds representing many content areas.  Having conversations with and listening to speakers who offer vast amounts of knowledge has been inspiring and always humbling.   In attendance at the National Conference I encountered people with many varying degrees of physical abilities.  I can see in other people that there is always a way. People of all degrees of ability are able to be accommodated and their gifts are able to be shared.  I want the same chances for my kids, pretty much a universal Mom thing, but we were never supposed to be in this position. Who really is?

This is the state capital building and this feels like our life.   The building is accessible, but the ramp is way off to the side and many more steps in hot, humid Austin.   Parking Libby there and realizing that we are spending everyday going over, around, under, and sometimes bulldozing our way through the systems. It's like my habit of picking up rocks from anywhere or bricks during our travels, I have to carry more.  More over, around, under and sometimes through brick walls.  Yea, I have a brick from 6th Street.

There are some amazing people who work to serve people with different abilities; Libby just generally doesn't fit into any of their service plans.   Here's what I've heard in the last six months: "she doesn't qualify", "she would have qualified if you applied before 18",  "why haven't you tried....", "call this number and start a case or make an appointment",  "but aren't you on...", and my favorite "what do you really think she'll be able to do..."!  More bricks.

Today we had our meeting with DARS to discuss Libby's test results for their vocational program.  These results will help us get her SSDI started and open other doors. I am glad we went through the testing, although now I have on paper what I don't want to know.   I don't want to know how much Liberty we have lost, how much of her cognitive and motor skills are gone, or her IQ.  I don't want to know and yet I have to in order to move forward.  

The caseworkers were very careful about how they gave us the needed information from Libby's tests.  I am most grateful. 

Libby was found to be unemployable/, not ready for any vocational training. A new label on new paperwork. Even though this is what we thought might be their verdict, it was still hard to hear.  My heart hurts and I think that's okay.   I am a realist and I am on the front lines for this kid; I know her limitations.  

I wish there was a way for Liberty to return to her pre-Lyme self.  Since that won't happen, we will keep moving 

one 

brick 

at a time. 

We went to the store on the way home and I had to cry through a few aisles. All the school supplies and so many little kids.  All I could see was the Libby from before. Before. Rachael took Libby and I maneuvered my sad way around.  (We were out of just about everything!) At the checkout the sweet lady in line behind me asked if Libby had CP.  I told her that she has Lyme which has wrecked her Neuro systems.  Her daughter had CP. She asked how old she is and after I said 18, she told me that they lost her daughter at 16.    My reality just got checked.   We had a beautiful conversation and I wanted to keep talking.   I thanked her and she just smiled.  She said to "just keep going".  Yes ma'am.  This has been hard, but we are still going. 

Libby is not a test score.  She is not a label.  No person is.  We will take these new labels and scores and use them to open a few doors.  Libby is beautiful and creative and truly gifted at wooing people. 

We don't know where this path of stolen bricks will lead is. I just know we will keep

going.  Monday we meet with the local college about the accommodations Liberty will need. I pray that this will be a positive step.  

Heartfelt thanks to our DARS people for trying to help and for being gentle on This Mommy. 

Perspective and tenacity

Rachael had planned a two night get away to Albuquerque several months ago.  We hadn't been able to go, just for fun, just for us, just to take care of a little business, and just smile in many years.   I have been so afraid of being that far away from medical coverage, our doctors, and our comfort that I didn't want to risk a frivolous trip.   

For over ten years we had been saving our change, with no specific purpose in mind, just saving it for some "rainy day".  This trip was our rainy day. We had enough to cover the hotel room and a meal or two. 

This drive up to Sandia Crest is one of the most beautiful places I've ever seen.  Tears flowed without reason as I was so happy to return. I definitely have a connection to this place.  

Libby was different while we were there.   She just soaked it in and kept saying that she "need to paint".  We asked her what she needed to paint and why and she finally shared something about "colors" and "inspired".   Okay.  So we will be painting.    She was so in love with the many murals and graffiti she saw all over the place. 

This picture was taken at the beautiful Civic Plaza where amazing things happen.  

I needed this time, though it was short and hard; I needed it.  Traveling with Libby is always difficult.  Traveling with her in two casts and heat made it extra trying.  She did try to be a trooper and then Princess Spoiled Butt would reappear.     

Never afraid to cross a bridge...

We have seen the mountain top and it was amazing! 

That view though...

My reflection is that objects in the rear view are closer and larger than they appear. The fear of taking steps forward, toward love and acceptance, has to be set aside.  Living life with fear guiding is not okay.  Not okay to me any longer. 

  The last five years and Liberty's illness was has changed me.  I am much less of a risk taker and have felt more fear.

We are dealing with completely new issues that are not related to her casts-that are breaking me.  Life isn't fair and having another part of her body under attack as we begin moving into adult life and college sucks.   It just sucks.  And it's not fair.    We don't ask for fair. We ask for ways around and a plan.

Can't go wrong with this kind of smile. 

Regardless of troubles and triumphs the sun still comes up tomorrow.   We, all parents, have to enjoy what we have  and keep moving forward.  Perspectives change, but tenacity doesn't. Tenacity I have. 

Leaping forward...toward regeneration

Home is a state of mind not a building

During our July quick trip to Albuquerque and back, one song kept popping up on the playlist.  I am super sensitive to music and what it says to me, so I couldn't hear this song.  It went through the playlist three times before I finally, on top of Sandia Crest, let it play.    

http://youtu.be/DQYNM6SjD_o

"The House That Built Me" by Miranda Lambert

It was this time four months ago that I was desperately searching for a group living home, assisted living, nursing company, resources, and general help to get my disabled 68 year old mother out of the home, that was falling apart, which she had grown up in.  To get her out of the place she planned to grow old in, before the probate, taxes and Medicaid took it.  This was four months after losing her mother, my Grandmother.  Mom had a time to be out by before the house was sold.  Preferably with as little fighting and pain filled drama as possible. 

**This is at the same time that Libby has her senior prom, is applying to colleges and for college support, and we, as teachers, are finishing up state testing and the beginning of the end of the year rush.   And Libby's graduation was looming, like the Hindenburg over my head. We were stretched in many, many ways. 

 I was calling, searching, and pleading for help and asking my mom repeatedly what she wanted, on coherent and also rougher days. She has physical and emotional problems which had gone irregularity treated, mostly because of her own fears and stubbornness.   **I am not one who she has ever before allowed to help her with her medical issues.**

At the end of April we got a call from the dad of a young man that Mariah graduated with. He owns rent houses and we all had a long conversation. He had a house that he was just putting back together. It hadn't been lived in since the 70's and needed everything.  Electric, water, sewage, paint, and even more. He said it might be a month, or more.  The earliest would be the 15th of May. 

Meanwhile, my mom, not always my fan, was caught in an angry and guilt ridden down-ward spiral. She was losing her home and didn't want to go.  She was terrified and called me everyday crying and then later angry and then later hurt. My mom has hurt people and been hurt. 

Hurt people- hurt people.

I had her name on three assisted living waiting lists, a plan to move in with my brother in Garland, and was just treading water.  Our landlord friend called and told us that if we could do the intensive cleaning, a little painting, and if mom could live without some things: flushing the toilet and water in the kitchen sink, then she could rent the house now.  By that Saturday morning, 5/2, we had a rented truck and a small army of friends loading her up.  

I had been packing several evenings a week based from a list of what was for-sure Mom's, until the official inventory and probate stuff was finalized. 

So, by May 2nd at 5:00, she was living in Happy.  We had all utilities hooked up within the week.   We did everything we could to be careful and leave the house without anything extra. We vacuumed- until the vacuum died-  and cleaned up/organized what was left, as best we could under the U-Haul time frame.  We had to unroll the chain link fence to get furniture out, around the locked parked cars, and had arranged to get it reconnected when we all had payday in two weeks.  I had paid for the fence to be fixed and apologized for any wrong-doing.    In my heart we were doing what we needed to, which was to get my mom out of the house before the due date and with as little drama and hurt feelings as possible. 

I was so relieved and excited to have had the chance to get my mom into emotional safety.   We got her connected to home health care, took her to the doctor, eye doctor, and began taking care of her. 

Things with the rest of the family have been ugly since then: blocked from Facebook, some police involvement against me, and since I moved Mom I have lost much of my family as have both of my daughters.   No blood family came to Libby's graduation, besides her sister, and she noticed. 

My mom has never really lived alone, taken care of her bills, been on a true medication schedule; we are working on it. This involves schedules and trust.   She doesn't trust anyone now. We are working on it. She is learning that "Home" is where she is loved and safe, not where she feels guilt, anger, shame, fear, more guilt, betrayal, and familiarity.  

 We are four months in, as of 9/2, and it is ugly and beautiful.   Mom has been more REAL and closer to functional than she has been for many years. 

There are so many blessings to be enjoyed and thankful for, much more than the materialistic stuff and blame that we can cast.   I willingly take the blame for all and ask that we move on.  This has been horrible. 

I asked everyone in January to remember Grandmother's words that, "it isn't how  people treat you that you will be judged for, it is how we treat them in return".  I had hope and I had faith. I miss my grandmother so bad that when I let her cross my mind I can't breathe. I am who I am because of her.  

I am full of hope that at some point this will all work itself out. I pray that the pain, anger, and grief that families fire at each other is eventually released and all can move on. Stuff is just stuff.  It is all too easy to attach grief to material objects.  

I know that I have many to protect, nourish, love, and take care of. I pray that everything comes to an end once the house that built me is sold. Maybe then we can move on. (It may have already sold, I don't know.) Maybe then we can treat each other as the delicate and damaged people that we are and move forward. 

Home is where we feel safe, accepted, and are loved.   

I know I'm stupid, but I believe that imperfect humans can love, and then hurt, and then love other imperfect humans. Isn't that why we are all imperfect?  

Again, I apologize to everyone I hurt in the process and how I have messed things up.   Truly the best hopes of a peaceful ending, logistics of waiting lists, and me taking on what I needed to were my hearts desire.  Plus, I believe that everyone deserves to be loved today, based on today.  We have a lot depending on us and we have willingly embraced.

Today is four months for my Mom and a new day.  Everyday it is hard and yet, we keep trying. We have to. We will be blessed and be a blessing. 

Serendipity and blessings

Life is funny.  Saturday we went to Hereford for a little guys 1st birthday party.   This was the 4th.  We usually have a BBQ and swim at our house but we moved it to get to be there for Mr. Zion Esca's birthday.   We missed his birth as we were driving back from Ft. Worth following both of Libby's

Implants for her DBS.  

Zion playing on Libby and then after her balloon animal. 

On this July 4th we were able to rejoice in Zion's birthday and meet the Director of Uniting Parents.   She is the sister in law of Zion's dad, Ben Garcia and Dr. Beth Garcia.  

<http://unitingparents.cohs.net>

Wow. Is this serendipity or divine intervention?  Is there a difference?  All I know is that I gained some fortitude from the amazing Maria Garcia, Director of UnitingParents. http://unitingparents.cohs.net

There are many doors that are barred, locked and barricaded to Libby.  There are others that have some weaknesses.  As we face three days of DARS Vocational Testing for determination of employability and numerous referrals to get the help we need to have assurance while Libby attends school, a blessing in an outstanding warrior spirit.   Pleased to meet you Maria!  

http://unitingparents.cohs.net

Libby's Hobbit feet

Tomorrow is Libby's Achille's Release surgery.   She has been nervous, scared, and almost excited.   Every new procedure is scary.   She shows how worried she is about something by refusing to help with getting dressed, by refusing to eat, by refusing to potty, by generally being a butt head.  Think of the limp noodle position that protestors used during the 60's.  What makes this a little bit harder is two fold: she isn't swallowing well so we are on modified soft and thickened food/drink diet and the kid has to potty.  You can smile now as we have practiced who lifts and who wipes.    

(We will be alternating those jobs using rock, paper, scissors...) 

 She knows we have been lifting and working out more to get ready for the dead lifting we will have to do.  At first she won't be able to stand on her feet at all, which means that when we transfer from wheelchair to couch, wheelchair to toilet, wheelchair to car, wheelchair to bed- we are lifting her.    Our practice sessions are hilarious, at least to us. 

  Always want everyone to know why we are doing what we are doing, here is a picture of her cute hobbit feet.   They're all turned in. 

This is the resting position, there are calloused in the outside of her little toe from walking. 

The hammer toes come along with her spastic retraction and her Parkinson's toe walk.  Her foot does not go to 90 degrees. Hasn't for a long time which is why we have worn AFO's, had Botox, and therapy. 

https://www.aofas.org/footcaremd/treatments/Pages/Percutaneous-Achilles-Tendon-Lengthening.aspx

Here is a good link for information.  

What a freaking blessed journey we're on.   And yes, I did shave her feet.