Six Year Diagnosi-versary

I     It was a lifetime ago when we got one of the best and yet convoluted phone calls ever.  The call that meant that Liberty had a diagnosis-finally.  We had something to fight against and a possible direction to follow. 

     After months of testing, while Libby lost the ability to walk, talk, and feed herself, and many, many specialists we had a positive.  She tested positive for a test that the eye doctor had ordered; positive for Lyme disease.  That doctor's nurse was happy to tell me that after a round of antibiotics she should "be just fine".   I called our Neurologist and told his nurse. We got an excited return call as Dr. Acosta believed that she would return to a new kind of normal if we could stop the brain atrophy from continuing.  

     We began massive amounts of research and queries into what we now know is the world of Lyme.  Because the American Medical Association doesn't believe that Chronic Lyme exists, there aren't  accessible treatments. In the eastern and south eastern parts of the U.S. Specialists exist that believe that even after Lyme has been attacking the body for years you can be "cured".   Libby has had several regular rounds of antibiotics and IV antibiotics for 30 days. Nothing changed. You can't grow back part of the brain that has died. 

**New research continues for Chronic Lyme.  

      Our reality is different.  Lyme gave us a seriously atrophied brain and a greatly compromised neurological system.  Then came the diagnosis' of Parkinson's, Dystonia, severe spasticity, ataxia and speech apraxia.   Cycles of meds, tests, medical staffing, more tests and new meds have left us with a pretty good idea of where we stand. 

      Our most recent evil gift is Detrusor Sphincter Dyssynergia; Libby's brain and her bladder/colon do not communicate on a consistent basis.  A bathroom, fluid/food schedule, and preparedness are our current method of defense.  I have to admit that this part sucks on a whole new level. 

      She's had years of speech, physical and occupational therapies that have given me a love/hate relationship with these wonderful professionals.  Mention "therapy" to Liberty and she will give you an ugly look. 

       Sometimes I wonder what our life would be like if we didn't get that initial diagnosis.  Would she still be here? What treatments and meds would we have pumped her full of trying to keep her alive and going?   Knowing your enemy is better than not. 

      

      The good news is that her brain has been stable and no new signs of atrophy since the last scans.  Not willing to lose more of her.  

     The other news is that Parkinson's and Dystonia continue to ravage her body, but we have an every three month regimen of Botox, five time a day pill schedule, and her Deep Brain Stimulators that we check/charge daily.  

In the future she may get a baclofen pump and maybe surgical relaxation of her hands.  

     Most importantly is that she is stil here. Her beautiful personality shines past everything. There are things that happen in life that truly aren't fair. Things happen that just suck and that aren't deserved. I have taken the blame for her infection and her illness in the eyes of many.  I wish I could take her illness from her, but I can't.  I would give anything to carry this for her, but I can't. I can only continue to be her voice, her muscle, and her advocate.  

      In the six years Libby graduated from high school, I completed two Master's Degrees, Rachael has almost completed her Doctorate, and after several changes in degree plans, Mariah is nearing the end of her college time.  I can't say that I have regrets for the last six years as I believe we have done our very best for Liberty medically, socially, educationally, and emitionally. There are so many things that could have happened to this child and I am always grateful to have had the chance to fight for her.  

     We continue to be blessed and know that we make choices everyday to live the best life we possibly can and to not let our circumstances determine out outcomes.  I believe in hope. 

Happy diagnosi-versary. 

Words

I have had this immense anger growing inside that has forced me to take steps away from many people.   So much in my life isn't fair and it is easy to dwell in the land of "why me".  That is not a place that I want to visit. The weight of self pity and the many negative words have been suffocating me. 

Words matter so much more than most of us realize. We, society as a whole, are force feeding each other a heavy onslaught of information which is incessant and, well, mostly ugly.  There is so much ugliness being said, typed, tweeted, snapped, and grammed that I fear I am unable to keep up.  By ugliess, I mean the negative and erroneous, the words said to be funny, which are really mean, the banter that puts one group down to make another feel good, and the constant sharing of uneducated opinions. This is part of my recent distance from Facebook and Twitter.  

The words spewn by so many through all media formats is almost guaranteeing that future psychologists have a full and hearty schedule.  We are feeding the world so much negative and not truly communicating while we are in each other's presence.

This is the world that our children are growing in and preparing to take over.  This is the atmosphere that is choking the positive and hopefilled world that I choose to live in.  

I choose to believe the best of all and that most people are truly doing the very best they can. I know my own naivety is risky, but I love my rose colored glasses. I'd rather have a heart that has hope than carry the weight of anger, resentment, and distrust. 

This is it.  This year is the one that I am claiming for all our beloveds.  This year we will set and reach goals.  This year we will embrace the growth as it comes from success, failure, and in between.  This year we will love ourselves and release the doubt, fear, guilt, and simply believe.  This year I will not let the struggle that is our life with Liberty drown my heart; I will let only the golden moments surround me with hope. 

I am strongly encouraging everyone to write their goals down.  There is power in words, chose to exemplify that power by writing down your plan for this year.  Not New Years platitudes, but real, discernible goals. 

Here are mine:

One physical- I will focus on strengthing my body at least four days a week. I will not allow my emotions to control my eating.

One professional- I will read and implement strategies and structures from at least one professional book a month. 

One emotional- I will not allow others who live in Negativeville to take me with them. I must believe I am worth more than that.

One spiritual- I will schedule time to write, read, and create for pleasure. I will write no less than 200 words a day, everyday. 

http://www.npr.org/sections/ed/2015/12/29/460143133/how-writing-down-specific-goals-can-empower-you

Join me and take the positive power of words through to 2016.

Fair as Fair Can Be

So

Much

In 

This 

Life 

Isn't 

Fair. 

Here's my list of things that are not fair....

I made such a list and had to delete it.  Said list was way too depressing. Right now one of the most unfair, tantrum worthy things is that Libby had to have her Deep Brain Stimulators' batteries replaced only 15 months since they were implanted. 

Libby had been at a very high setting for over six months which apparently wore her batteries down much faster than expected. In early October, we went to have her quarterly appointment for DBS check and Botox, the nurse asked whether or not her right battery, "should be on".  I had to leave the room before I threw up on everyone. Ugh.  Her battery hadn't been working for awhile and I had missed it.  I had blamed her increased spasticity and apraxia on her needing her Botox and the demanding schedule of her first semester of college. 

This is loopy picture #1caught between whines. 

We had been living her dream. We were going to work and both of our daughters were going to college full time. The art that she's been producing is amazing. She's been making it.  I mean really making it in college, with help from Mariah and Jennifer. Libby had made it through high school which was not promised; her living this long is truly amazing.  

Liberty's progression of secondary diseases has changed so much of all of our lives.  She is steadily losing weight, and I promise we are feeding her. Her swallowing issues remain constant as is the loss of tone throughout.  The ever changing bladder and bowel problems are NOT fair. Dystonia and Parkinson's are evil and they suck. This isn't fair. Liberty's illness is not fair. We should not have had to take this time to get the batteries switched out.  Not yet. Not now.   But if not now, when?  And aren't we lucky to have the DBS already implanted? 

After surgery, Rachael and I got to see a glimpse of what Libby would be like without her brain stimulators on and without her meds.  It was awful.  Terrifying. Legs locked straight out.  Fingers, hands, arms and neck twisted in a completely horrible position.  Awful.  The spastic nature of dystonia sucks. 

Yes, her DBS makes a difference. Her pills, especially Sinemet and Baclophen make a huge difference. 

http://professional.medtronic.com/pt/neuro/dbs-md/prod/activa-rc/index.htm#.Vkdt7yZOKnM

With this new battery comes the "three strike rule". If we let her battery die once, we have to call and have it reset.  Second time, we have to return to the hospital for training.  Third time we let it die, they take the rechargeable battery out.  We are approaching  bad weather season and my new fear is losing power and not being able to charge the charger.   Guess who will be buying a generator- like yesterday.  Her battery charger will hold one full battery recharge and then it has to be plugged in. Serious business having a battery operated kid. 

There are  times when I want to throw myself on the floor and kick and scream in full-on adult tantrum style.  There are other times when I want to hide under my bed, or in some other tiny space, and eat ruffles. Most of the time I follow my never ending list of to-dos and keep doing. All of the time I am humbled and grateful for the life WE are living. 

Love this blog and what she has to say.  I really appreciate this statement. 

"God’s will is not an event that happens to us, it’s how we respond to what happens." 

So, any tantrums are postponed. I can't control what these diseases are doing to Liberty's body, but I can remain vigilant and do everything I can. We are going to keep moving. Always grateful and not looking for what is fair.   Continuing to do more than is asked and more than is expected. Be blessed and be a blessing. 

http://www.foreverymom.com/quit-saying-everything-happens-for-a-reason/

October in Teacherville

Yesterday, I left campus at 6:15 to go to my night job of teaching. A wreck happened right in front of me.  The carnage barely missed me. I managed to back up, barely. The car that was hit stopped inches away from my front bumper. Glass was everywhere. The ironic part is that before this happened I was already a shaky mess.  Why?  Not Libby. Not Mariah. Not my Mom. Not my loves. It's school. 

In that split second when I thought I would be hit, I didn't think about my daughters, my mom, my loves.  I thought of the grades I needed, and if I had sent that email, and when do posters go out, and, I have to finish the data analysis, and, and, and...

The month of October is where the normal wear and tear on our teacher tires start getting thin and running rough.  We wear out. The numerous levels of stress becomes overwhelming. Layers of paperwork and grading to get through, searching for some kind of glimpse into the mind of our students. 

I cannot tell you how important this is.  Teaching is a marathon, not a race, thank you, Terri Morgan. There are going to be days that you feel like quitting and "going home because Walmart will always hire me", but you don't because you are "never so alive" as when you are teaching-Rachael Collins. "Focus on your passion" and keep going- Lisa Mote. 

There are still days when I wish I could do enough, just something right,  and could reach that one kid.  There are still days when I wish I understood why one child will do the work and another won't. When one child will destroy sticky notes because all they know is destruction and I can't fix them. When another child needs help, or encouragement, or simply to be heard.

Then there are the politics which come with working with other people. The damage we do to one another  with technology is truly sad.  Teaching is a profession where we create all other professions.  

 Then add the massive weight of increasing testing rigor and expectations, not to mention the incredible amount of student loans, money out of my check for the classroom, fear of failing these kids,  and you will find me empty. 

It is late October and I am

Empty. 

I just want to teach.   I believe in the ability of people to learn. I believe in kids.  I believe in teachers. I believe in accountability on all parts. I believe in doing everything humanly possible to make sure each child/person more educated, but many teachers aren't humans. 

Hug and support your new teachers.  Maybe share a snack and cry a little. Continue to admit that you  "don't know" and then help them find the answer. 

To me, real teaching is hard. It is to give pieces of yourself to other people and recognize that giving. To me, I don't know something until I've taught it. So, by my understanding, I come to the classroom ready to give.  And give relentlessly. And be empty- for tomorrow. I know the students and restore my hope- because I give them my hope.

All people involved in the wreck yesterday were okay. 

Be blessed and be a blessing.

http://www.npr.org/sections/ed/2015/10/22/450575463/it-s-okay-to-cry-in-your-car-fighting-disillusionment-as-a-first-year-teacher?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=2047

Juggling Princess Pincushion

Hello from the land of Mom of two kids who are both in college.  Everyday we are trading out books, bags, hand and leg braces, meals, pills, potty times and homework.  

She is loving her classes and has even admitted to having "fun" in her new math class. Her reading class is interesting.  She reads lists of short passages and then answers questions over the text.  This is online work and either one of her scribes, Jennifer, or Mariah record her answers.   Her graphic design and beginning drawing courses are exciting.  She has really been turning out amazing work. 

The top is the model, the bottom is hers.

Ball and cone to work on shading.  I can't really attest to what all she is drawing because she is producing so much in her classes. 

Of course, her portrait of Her beloved Bryce just kills me. This is mixed torn paper. 

It's feels like we have adapted to college fairly well.  The longer class periods and the many hours of homework just make this juggling act more interesting. 

Liberty hasn't had Botox since June 3. Scheduling around all of the school schedules and her doctor's schedule was difficult.   We've had this appointment since early August; it was the first time we could get in.  

Dr. Acosta was happy with her feet and how well she is holding her ability to have 90 degree flexion. 

Libby has been fighting us over not wanting to eat very much, and we are not sure if it's more of her jaw hurting or because she worries about getting too big.  She has also fought over taking her pills, especially the relief pills.  They make her foggy and she can't draw as well after having them.  So, she's willing to be a shakey locked up mess over foggy brained. When she's locked up she can't really use her arms, so not taking her pills is a lose-lose situation.  Stubborn!

She took Botox all over her body and didn't complain much. She even got some in the bottom of her feet. She may whine to us, but she really is tough. Because her neck has been extremely tight, she is struggling to keep it up in class and to do her computer lab hours, lots of Botox was focussed on her jaw and neck.  

I hate seeing her hurt and locked up; it is only because she gets relief after these treatments that we continue.  So many sticks with so many needles.  We have thickening agents on order, just in case swallowing becomes an issue.

While the DBS Nurse Practioner was checking her batteries she noticed that one, her right side battery, wasn't working at full charge. I had to step out of the room.  Instantly I am nauseous and can't breathe. Her left side had been tightening, but I really thought it was the lack of Botox and the immense strain college has been on her body.  I missed the fact that one of her batteries are low and that's my job. 

http://www.medtronic.com/patients/essential-tremor/therapy/dbs-therapy/activa-rc/

She will have to have her battery replaced and there are now a rechargeable version available.  Instead of two batteries, one for each side she will have only one that charges both sides.  She have to wear a charger for an hour everyday. Apparently they don't have a solar charged battery, yet.  Then I could just sit her out in the sunshine. 

We wait to hear from the Neuro Surgeon about the date. We will try to get it after the semester ends.  It is a day surgery, which makes me less fearful of missing school. Her next Botox is in February.

Gotta smile at the Libby nest made for napping. 

Princess Pincussion is hungry and fussy. Typical day with college kid. 

Yes, those are Libby's legs hanging out of the bathtub at our hotel. When we travel, it has become safer to just sit her down into the water, sideways and bathe her.  She doesn't hate it, so that's a plus.  *No teens were embarrassed during this photo shoot.

Perfectly abnormal normalcy

Two weeks ago Liberty started college. My baby, who was struck by a horrible illness years ago, was starting college. She was not going to be in the same campus and within very safe bounds. 

Now, now after the tons of hoops, tests, meetings, and paperwork- she is going. She is two weeks into her first semester of college. She is all over everywhere as she has twelve full hours plus some lab time.  She couldn't do this without Mariah and Libby's Aunt Jennifer.   So, very grateful. 

Jennifer and Libby chilling in the Art Museum. 

My baby is out there. She has pictures and stuff posted about her that I have no idea of.   She has a desire to skip her math class and nap.   She hates the extra long classes.  She wants a phone and a van to drive her in.  SHE wants to join Match.com. She wants to join clubs and stuff. She sees boys she likes and tells them.  She is surrounded by people who I don't know and who don't realize how important and precious she is to all of us!  

Here you see Mariah pushing Liberty away and toward both of their futures. Both sides of my heart going forward toward their dreams. It's a fuzzy picture, may have been crying. 

This morning it hit me while we worked on HER homework on a Saturday morning- this is normal. Liberty is in amazing hands, but she is my baby. My baby is off to college without my safe parameters. She isn't at Caprock where I can check in: physically, medically, and emotionally all day.  That's what happens when they become a legal adult and choose college.   My umbilical is double wound and stretched.

    We planned and prepared for everything: pill schedules, easily accessible potty places and times, hand braces, dealing with leg braces, feeding places and schedules, lab times, homework times, and even individual schedules for all of us around her.  I didn't plan for extra long classes and keeping Liberty's learning engagement that long. 

Libby is taking math, reading, and two art classes. There are study sessions in the computer lab as well.   She is learning to complain about things that really do hurt, her leg braces, and do it so loudly so that she can get out of class. This is also a normal. She's enjoying herself.

The top row is the model form, the bottom row is Liberty's. 

This one is cone and ball with shading.  Shading is hard because with her new art brace she has to change the angle of her hand, but she's doing it!

Three hours on homework this morning, guess I'll have to consider adding that to our routine.   So normal. And beautiful and blessed. 

*DARS services can begin, testing and vocational training, at the age of 18.  Waiting until your child with a disability is 18 May be too late. 

http://www2.ed.gov/about/offices/list/osers/rsa/wioa-reauthorization.html  these workforce programs can begin at 14. Visually impaired students can begin receiving services at 14 years old. 

*Section 504 recipients and those with physical and intellectual disabilities can receive accommodations in post secondary educable environments. 

*Modifications, changing the course material is not allowed in most campuses. Accommodating the material and environment to be more conducive for that students learning is. 

*It's important to start asking about your options before your child graduates.  

Be blessed.

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!