Birth and Re-birth

Part 1- Birth of an adult 

I have not yet been able to write as much about Liberty and her momentous 18th birthday.  This year she asked for donations to add to our weekend food program that our school is a part of, Snack Shack.  Hunger among children is a real issue and we were very grateful for all of the donations, including many from other seniors in Libby's class! 

I challenged all of my students to ask for donations instead of gifts for one birthday. Any birthday. But just try on the idea of giving instead of receiving. 

I just couldn't do a huge celebration this year because I was overwhelmed and overcome with the reality of what this birthday means.   Libby is an adult and  with that everything medically and educationally changes. I am still responsible for all of her bills, but without the needed paper work, I have no say in her medical or educational care.   We have the appropriate paperwork and Libby alone has chosen to graduate this year and head off to college. 

This brings on another huge ordeal that I am still muddling through.   She wants to go to Amarillo College to study art. Okay. Who pushes her to class?  Who is her scribe? Who will her communication partner to ask and answer questions in class?  Who will give her pills?  Drinks of water? Potty schedule?   And a huge question is who pays for what?  

If I need to, I'll teach more. I'll clean houses. I'll do whatever it takes. But I have been through several meetings with agencies, who were created to ensure that people with special different-abilities, where I left feeling stupid. And worse, where I felt like I was crazy for asking for my kid to have help to reach her goals.  

The day before Libby's 18th I had three people ask me why I hadn't planned for her future. 

I was walking in faith that she'd make it to 18.   I had plans c-q covered in case she didn't.....

She had experimental surgery this past June and nothing is guaranteed. Doctors can't stop the degenerative part of her illness, the progressiveness of her dystonia, and her Parkinson's, so I wanted a successful year with her cohort senior class.  

At 8:30 am January 9, asking me why I didn't have her applied and registered was an eye opener.   I should have. I just couldn't have the day to rejoice. I had to beat myself up for not planning ahead. I had to allow Libby to choose to move to Amarillo  College or stay at the safer place of Caprock.    It is her choice. That's the scary side of raising kids-their choices.

While we wait for the agencies, who I will protect due to professional dignity, I have no next step.  I await phone calls. I await emails and snail mail. I await answers. If even the invite of more paperwork will mean that my child can continue on toward her goal safely- securely- and legally- I'm in. 

What happens if she is told no?  

She's already asked me if she gets to go to college; she's been promised that if her grades are good, she is in school with no discipline, she will be able to go- but what if it's been a lie?     I can't bear the thought of telling her that.  Her dreams will happen.  If there is any way I can make it so. 

At some point Libby will get to run and be as free as she can be.  That's my job and my promise to her. 

http://youtu.be/Lg01HyUMERM

Meanwhile, she has been accepted to AC, she has an average over 95%, modified graduation plan, and is involved in lots of community service and extracurricular services. 

And we have art competition, prom, pictures, invitations,celebrations and many other things to think of...$$$$$. 

Seniors are expensive and I love it. 

Celebrate and consider this. 

Re-birth 

Amongst all this has been the loss of my beloved Grandmother, Geneva May Farley Bumpus, January 24th, 2015.    Almost a month. Dang, wish I had time to feel this loss. Huge part of me is gone and I can't even think it through.  But I made her some promises, and I intend to keep them. 

Year

     Libby is now 18 and I don't have a solid plan. She made it to 18. 

Before I tackle today, I wanted to reflect.   

I've heard and read so many posts about how challenging 2014 was for many people: health problems, money problems, family problems, elder care problems, moral problems, mental health problems, career and goal problems and or course love/relationship problems.  I think I may have missed a few boxes, but that's most of them.  And it was a year of hope and fear for me.  I have not and will not let fear control me.  I am blessed.

We made it to HER 18th birthday. 

2014- We made plans and took giant leaps of faith.  We made mistakes and made better choices. We made more friends that have blessed us and sadly, lost a few older friends.  We made significant steps towards our goals as a family.  We made our little family stay safe and healthy.   We made it.  Blessed. 

She is 18 and a legal adult.

I won't say that I am not stained by the stress of everything.  I know there is a lot going on and I see how Liberty responds when I'm noticeably overwhelmed.   

Liberty turned 18 yesterday.  Being the parent of a "completely differently-abled" child means that I have to make calls, discuss decisions, plan and have horrible discussions- instead of simply celebrating the fact that she made it to 18. I wanted to complete this week and then begin tackling the planning this next week, but many caring individuals asked me too many questions and pushed me into focussing on the icky parts. We have had to make some painful decisions about Libby and her future.   

Last weekend, I was talking to Libby about going to back to school, her upcoming prom, senior photos, and this summer. She informed me that she would be moving out and getting married after graduation, since she will be 18.   

I, no one else, I had to remind my child, my baby, that her body doesn't work the way others do and that I would continue taking care of her. You see, she doesn't always remember that her body doesn't work. She doesn't always remember that she has to be lifted many times a day because her legs really aren't working very much anymore. She doesn't remember that she can't feed herself or

clean herself- at all.  I have to remind her. That's the awful, terrible part of being this parent, I have to remind her that we have to do things differently. She can't dance like the other kids, but she can dance in her chair on a good day.  She can't sing like the other kids, but she can memorize songs with amazing speed.  She can't marry at this point.  The children she dreams constantly of having are somewhere off in the future.  

I could cry and cry until it

feltlike the world spilt in two

but I'll  keep being spit back out

because there is so much left for me to do. 

I get to continue to pay for her care and for her medical, but have to also ensure that I am legally allowed to do so.  

So, this week when being asked whether she wants to go on to college or staying in high school for awhile, all I kept thinking was that she is alive. She is still here.  She made it to 18.  We were told to "get her baptized and prepare our families" when she was barely 12.   She is here and has a purpose.

She is teaching me lessons on gratefulness and complete humility.   I have to allow myself to say that sometimes it sucks and hurts so bad I can't breathe and then she tells me to ask for food for her birthday for other kids at her school because they need it.   She is teaching me.   

Where there is hope there is always a chance and I am "better off for all that we let in".   "All That We Let In" by the Indigo Girls

http://youtu.be/gR8GXEmu2V4

Thank you to everyone for helping make it to this landmark.   I have made the calls for transition help to her from high school to her college dreams.  We will apply for her SSI. I have begun the next step.  But before I table tomorrow, I think I'll relish today.  I have two daughters who have made it to 18.   I am beyond blessed.

My plate

I would not trade anyone's plate for my own.   Ever.  Can't even ask for this "cup

to pass" without me.

I know everyday that I am blessed beyond measure and will always do more than is possible. 

Let's discuss the plate I carry. 

So, we are fighting multiple side effects with Liberty's progressing conditions.  We go back on December 5 for Botox and to turn up her battery charges.

 Who knows what will happen after that.  I believe the she will be able to lossen up more.  The DBS is a treatment and a dealing technique 

Not

A 

Cure.   

Her ongoing treatment will be a balance of medications, DBS alterations and Botox.    And SHE needs therapy outside of school.  She needs it. Her last place won't return my calls. We face pressure sores from sitting and lack of positioning changes.   Working on that one.      She needs bladder control and ability to swallow fluids on a predictable basis. She needs so much.    

Next- 

My beloved grandmother is now in a nursing home. I lack the words to be able to process this situation. Grandmother is enjoying her socializing at the home and it is a beautiful place.   My aunt Judy is doing everything she can to keep grandmother happy and safe. 

My mother and grandmother have lived together for many years. My mother's health has declined in such a manner that she hasn't been able to take care of grandmother for awhile now.   Mom refuses medical care and help. Her fears over what is going wrong with her body have caused her own self neglect. 

Grandmother worries constantly about my mom and wants to go back to her home.  But she can't.  The house isn't safe for either if them.  It is not wheelchair accessible; DARS and APS have already been there.  My mom could go to a home, and yet she refuses to discuss it.  She can't afford to stay in that house, which breaks my heart.  I can't afford to do much.  I have plans to find some extra money somewhere.  There is little I can do except make the weekly visits and offer to do whatever is needed.  This level of guilt makes it hard to breathe. 

This weekend I pulled a surprise get a away for Rachael and her 40th birthday. Her birthday always gets the shafted.  We either have doctor appointments in Ft. Worth, no money because of doctor visits, or it gets lumped together with everyone else's.   She is selfless and doesn't complain, she just has no expectations.   

The party was fabulous and I am grateful to everyone who helped

With the food, decorations, gifts and conversations. 

 

I started in August, after a training in Dallas, planning and putting money back to enable her to have a two night stay at a hotel, the second night was the surprise party with friends and family. This meant some careful monetary planning. We were also going to have a night alone which didn't happen, but it will soon. All relationship accounts need input, even ours.  I will be hiring a nurse very soon. 

There's Mariah, family, work, a dissertation, the animals, and so much more to keep balanced on my plate. 

Just know this- I picked up this plate, or was chosen for it- so I will continue to carry it.  Please don't say to people that they "have enough on their plate", because then it feels like I must not be doing something right since I try to handle everything else.   I'm carrying the plate, everyone will know when it's too heavy. Then there would be a crash.   And I'll go right back to picking up hope.

Super sized life

Nothing I do can be small or bite sized. 

I don't do a lot of eating out, not because I am that healthy. It's because my body just doesn't accept most foods very graciously.   The idea of pulling up and ordering a super sized meal and gobbling it up I sounds good but it just isn't going to happen.  Right now, I am full.  Full to brim with love for my job, my family, my friends and my life in general.  It's as of every emotion I have has grown to be supersized.  This year it seems as if we have super sized everything- our love, our hope, our pain and our struggles. 

 We have beauty and hope. 

And some

Scary little critters.

So blessed.  

There is also the ongoing roller coaster ride that is life with Libby and her frenemies Parkinson's and Dystonia.  Libby is developing different symptoms and more of some old issues, like spasticity and less of others which is a conundrum.  She can't seem to do anything predictably.   At all.   

She decided Friday to skip the senior pep rally because the noise makes her head hurt.  Truly, I get that. It is just a milestone she missed, yet I respect her  decision.   Even if Libby were still healthy, the emotions would a be wild and crazy because she is a senior in high school. 

So, We have a senior ring, cap and gown sized and ordered.  Ten hours of community service completed. 

Halloween carnival, homecoming, Caprock's  Trunk or Treat, and so much more competed in this first twelve weeks of school.  I must say that she is so much more verbal and complains so much more that it is hard to tell when she is truly happy. Or, at least, content.  Super

Sized order of hope.

Mariah has stated another job which will lead her, hopefully, closer to her long term goals and a healthier lifestyle.  That's the struggle and amazing aspect of having a grown child.  The balance between nagging and pushing and then speaking my mind, while being kind, loving and supportive.  Again, super sized order of hope here. 

The gargantuan emotions also reflect in the sadness that I have had to simple face and somewhat embrace.   Everyone has some sadness that is out of their control- I think. 

This school year I have had to accept and realize that having my current position means that I do not have have many friends at work.  I have truly had to leave my ego in the car every morning and keep my focus on the students who need me.   Super size hurt and jabs at my self esteem and yet I know that I try to do what is best for my students all day, everyday.  I believe in the students and in the process of designing, planning and learning with them.   I will continue to believe that I have been placed where I should be and where the students need me. Too late to ask why and time to ask how best to do the job ahead of me.  I am having a great time and my learning curve is off the charts.  Super sized order of fear, planning, researching, trying, asking questions, trying, and planning some more.  

There is so much more, but as my emotions and stress levels bounce up and down I have to keep in mind that my God has this under control.

And, no, it's not just hormonal, and yes I do believe in "go big or go home". Amazingly gifted to have the chance to be overwhelmed! 

I know that in a few years I'll look back and be grateful for all of over sized emotions and stressors.    Now I believe I will be taking a nap with my senior princess. 

Challenging you all to B.A.I.T.

In honor of mental health awareness I am putting myself further out there.

I made a promise at the end of school last year that if Liberty's surgery went well I would go to doctor myself and focus some on my health.  I have been through many, many tests in the past 8 weeks and what I've learned is that stress has seriously affected my health. I've also learned that my gall bladder is kind of working and that my digestive system responds loudly to stress.   The things that stress me aren't going away. I have to simply learn to deal with them.  Simply deal.

In the past seven weeks I have had more amazing teaching moments than I could have hoped for. This new position has placed me on an extreme learning  curve.    I have no doubt that I am doing what I'm supposed to be doing with my life when I am teaching anything.  I just want to teach.   I am teaching my favorite authors everyday. The multitude of challenges, successes, and failures  means that I am continually able to learn. At the same time I know that any ego I have, which is virtually non existent, stays safely in my car and cannot enter the classroom.  Teaching is not about me, it has to be about the kids and supporting other teachers in their learning journey. My constant mantra is always "teach through me and guide me".

I have never wanted to give up and recently I have had several moments where I just wanted to go home.  Where I felt like I wasn't good enough.  Where I felt like I would never be enough as a teacher.  Where I felt stupid.  Stupid.  Inept.  Not respected or respectable. I allowed myself to feel inferior.   

My beloved grandmother remains in a rehab facility following a terrible fall a month ago.  She turns 98 next month. She will continue to need full time care and she is getting amazing care where she is and by my saint of an aunt. 

My mother's physical and mental health is deteriorating exponentially.  Leaving the past out of it, my mother is much more ill than she realizes and has little control over her mind. She will continue to need full time care, if she would allow anyone to take her to a doctor. 

Mariah is making huge decisions about her future and all I can do is support and pray that she finds her path. 

And Libby.

There are too many crazy monkeys right now saying awful things in my head. 

Stress is something that cannot be underestimated and overlooked.  Notice that none of the things listed are truly about me.  They are about people and things I care about.  I cannot let these stressors overtake me.  At some point I have to admit that I can't fix everything and that not everything is my fault or within my control.  And I don't have the time or energy to be negative.  I assume the best of everyone. 

 

If I continue to begin every action with a pure intent with the hope that no one will be negatively affected and remain humble  then all I can do is grow.  I will promise, here, publicly, to speak up when my plate is truly full.  When I have reached a point where I cannot handle what I've been given to handle, I will let you know.  Until then I'm going to be listening only the "Voice of Grace" as Elizabeth Gilbert says.  

https://m.facebook.com/story.php?story_fbid=709528589129259&substory_index=0&id=227291194019670

None knows what you are carrying around and what negativity is in your head and heart.  

In honor of mental health awareness please-

Be kinder than necessary. 

Assume the best of everyone.

In all instances try to positively support others. 

Truly be humble. 

I urge anyone who is feeling stressed and overwhelmed, map your stressors.  Journal.  Reflect.  Create a plan. 

**Please know that you are loved.  When you, yes you, all of you, feel inept, unable, less than, unloved, know that I love you.  Know that there is nothing as important as how we handle right now and how kindly we treat others (and ourselves).   Be blessed.   

"Big Bang Theory" is on and Sheldon is calling... 

 

 

Seniors

 Can't tell you the grab bag of emotions this year has brought. 

Libby is a senior in high school.  Yep, a senior. When Mariah hit her senior year I was not prepared for the mixture of emotions.  Still not prepared. 

Senior yearbook picture day

Pep rally

Super hero day during homecoming week.

Homecoming parade 

Libby waving to other seniors as they cheered just for her.  This was her senior ring ceremony and when we got up there for her turn the announcer asked her name. I jokingly responded that she prefers "your Majesty" but Princess Liberty would do.  He announced her as Princess Liberty and everyone cheered. This was a heart changer.  Libby isn't here for me. I think she is still here to illustrate resilience.   We've really pushed her this first six weeks attending lots of activities and doing the full

Senior thing.  Such a beautiful experience for most parents, beyond for me.   During Mariah's senior year I was terrified I hadn't taught Mariah enough and fearful with a dash of excitement about her future, with Libby I can't think past this year.   Focussing on each day.  We didn't have a guarantee that she'd still be here. 

Libby has been invited to join National Honor Society, even though she is on an altered graduation plan.  

She has also asked to join Key Club. Both groups require community service and so I get to push her to give back, just as Mariah did.  Learning to serve is an unbelievable blessing. 

The DBS seems to have loosened her up more while she continues to need more

Chlonopin to be functional.   We have noticed that she complains much more, to us, about pain.  I believe she is feeling more and recognizing these feelings due to the DBS.  She is also a typical moody 17 year old.  We return in December for another increase and a Botox session.   She needs it.   The Dystonia and Parkinson's continue to wreak havoc on her legs and feet.  Hoping to find a therapist this month, because she needs to be as mobile as possible for as long as  possible. 

Our sweet babies sharing a night in their "boat" for my birthday.  How can you not love this?  Blessed.   

Libby is a senior in high school, and I think she is making a difference in many lives. 

Woes and Goes

Tomorrow I report back to school for teacher in service.   I may be in mourning for the summer that has disappeared, many are, but ours has been a stressed-filled time, full of joy.  And gratitude.  We have been going and going and have treaded through many woes. 

Before school released us, I told my coworkers that I didn't know what kid I'd be bringing back to school for her senior year.  I didn't know if she'd make it through the DBS implants.  Didn't know if she's still be herself. The risk factors were so high for infections, strokes, and worse. 

I didn't hope for much other than for this surgery to not make her worse: not tighter and certainly not add more pain. 

We were on the go all summer. I taught summer school, we spent 19 days in Dallas/Ft. Worth and have tried to balance a few hours moving my classroom and various other trainings. 

We never even set up the little swimming pool. 

I have been asked many times if she is better yet and if we have gotten the results we wanted.   

The response to all such questions is simple: we're idling.  Right now the stimulators are releasing a very low charge into the very Dystonic part of her brain. It's like a car that is turned on and left idling. We go back at the end of the August to get more programming which will up the voltage.  This will happen many times over the next year or two.  

(Trying to get her to stand up a little more, I drew a circle on the bathroom mirror to help her visualize where he head needs to be.)

The big "woe" is that muscle retraining is very difficult.  Her muscles have gotten used to being on their contorted positions.  Her neck, my nemesis, is particularly determined to remain cocked to the left.  

At first glance she doesn't look different. She is looser.  We've been able to reduce her pain meds. She's not wanting to sleep as much.  There's been a change in vocabulary that I can't quite describe yet; her speech still varies minute to minute.  

(This is her attempt at a pouty face.)

She is 17, her name is Liberty, and she is very stubborn.  If she doesn't want to, she won't.  I push her and am not easy on her, so she is completely tired of me; it's okay this feeling is mostly mutual. This is what I do, I push her to do more and try harder.  I have to. (Remember that she has NO therapy at this time, their choice, not ours.) 

She is still alive and so are we. 

She is very ready for school to begin because she is a typical teen. I, however, have many worries about school and will not be carrying these fears alone.  I'm trying to pass my school worries on over to a higher power.  

 For me life as a teacher is a mixture of intensive studying and planning the repeating the mantra to "leave my ego in my car". Since May, I've completed over 60 hours of training (30 of that was online), read five professional books, and a bunch of new literature. New classroom, new grade level, new woes, and new chances.  I just have to believe that I am where I am supposed to be.  I love changing things up and always tell the administrators to put me wherever they want. Many people were hurt because of the changes made to our campus and our district. I hate this. I hate knowing that people around me are hurting.  This only adds to immense apprehension before beginning this school year. I do not ever want people around me to hurt, and I certainly don't want to be the cause. I only hope to be able to focus on the student needs and support my peers.  We have to work hard as a learning community to support one another! I never know how long I'll be able to teach.  Everyday that I am able to be at school and do what I was born to do is a blessing.  I cannot allow my professional stress to harm my ability to take care of Liberty, my loved ones, and at some point I'll need to try to take care if myself.  

Our summer full of woes and goes is at an end.  When people ask me if

I had a good summer I think I'll say that everyone lived. We spent time together. We shared many tears and a bunch of belly laughs. We put miles on my car and my heart.  We just keep going and going and going.    I think we slew a lot of woes this summer. I know we have survived immense stress and have come through with arms full of hope.