Goals and Gifts

After the shock of Libby's 18th birthday and the amount of work to be done in order to get her into college, I asked Libby what her goal was for the rest of the year.  (This is after the challenges of SSDI, modifications, and accessibility hit me like a circus train full of elephants.) She responded that she wanted to dance at her prom and walk the stage at graduation.  So, we have been pushing her more and more to strengthen her legs and trunk. The ability to walk more and correct her body positions more has been enhanced since the DBS increase and the Botox at the start of March.  

We pushed her goal over Spring Break and starting this week I left her wheel chair at school and walked her to the car.  The next morning she walked to her class.  And repeat.   Tonight she walked, always with assistance, into Walmart. We have to push her because she still gets no therapy outside of school; I hope that this will change over the summer.  It's a challenge for my body as well as hers, but her goals match mine for her and I know it will be worth it. Moving her and stretching her more it is.   I'll add some Tylenol.  

An amazing young man, Jake, has asked Libby to go to prom.   He is smart, sweet and truly one of the kindest people I've met. 

His mom, Eliza, has been an ASL

Interpreter in my classes for many years. She, and her family, have known Libby since before the Lyme disease changed our lives.  

She thinks he's very handsome and squeals every time he is mentioned.  She is beyond excited to go to prom, show off her dress, dance, and have a date.  

 

**Disclaimer-- I have loved this school for over 13 years.  Since I first stepped foot on the campus.  We have made choices and sacrifices so that I can work at this school 35 miles away from the home I also love.**

Unknown to me a group of seniors started an Instagram and Twitter campaign to nominate and elect Libby as Prom Queen   Uhmmmmmm, what?  Totally unexpected and something I would never even say outloud that would be thought of, much less dreamt of.   Today was the voting, ironically through English classes, and I was humbled throughout the day. 

Since I heard about this whole Queen thing I've been afraid. I didn't want my precious pearl to become a joke or to be used period.   So afraid and protective that I haven't even told her that she has been nominated.  Talking to my students I have been even more humbled and amazed by them than ever.   I was told about how Libby always shares her smile, sings, and laughs with her peers.   They have lived through the last four years watching her walk into Caprock as a Freshmen and then become almost chair bound.  They have lived through her tests, scary surgeries, and the painfilled progression of this terrible disease. Libby is theirs and she claims them.  When a kid waves at her she always tells me "my friend" and then fills me in on what class she has with them.   I have learned to love all of these kids through her eyes and heard from Libby when a student was upset and failing, or excited and thriving.   

Because of these amazing students, Libby has been able to try many things knowing that she had their support.  Even when her body shuts down and her speech leaves her, she still has other kids who don't give up. Because of these scholars and future leaders she has been given an amazing gift- acceptance of her regardless of her abilities or disabilities.   Whether she is elected or not, Libby will be filled with joy simply hearing her name called out at her senior prom.  

This day, this chance that before her body was attacked wasn't guaranteed and I would have taken her prom for granted.  I am so full of awe and gratitude that I cannot even process what these kids have chosen to do.   

This school is a high poverty school with a high percentage of students of color and these are the ones who have chosen to allow two who would be generally overlooked to shine.   One of the boys nominated also has some challenges and is well known as one of the kindest and funniest people on campus.   They have chosen to give these kids a chance.  Admiration and appreciation don't cover it. Already such an amazing gift.  I love my children, biological and claimed.  They are all mine and Lord knows they have my heart.  

Meanwhile, there are several weeks of high stakes tests and lesson plans and life until the prom.   Lots of planning to be done!   Never underestimate the kindness of people. Simply amazed. What a gift it is to do what I love with such amazing students. 

Choosing, adding, and a bit of the everything else

It seems as if the balancing between mothering my children, other children, broken adults, and my four-legged children is a heavier struggle as of late.  I have to hope and believe that my biological children, and all others, know that I love and support them. Being kids of a teacher means that you share your mom with many.  I try to think that it isn't an act of choosing between, but is an act of adding to. Thinking along these lines I adore all my kids and I hope they know that I love them and expect greatness in return.  One of amazing students painted this for my classroom.  I am so blessed! 

Last Wednesday we drove to Ft.Worth for a Botox treatment and DBS programming.  The weather was interesting, as a snow storm followed us all the way down.  

Because Dr.A was adding injections into Libby's feet, the soles, she was sedated for the Botox injections. Trying to relax so that her Parkinson's toe walk will be more like a flat footed strut. He also treated the huge knot on her neck as holding her head upright remains challenging. We have been battling some skin breakdown on various places on her head and neck because of her head constantly  laying to the side. Along with neck injections comes the chance of swallowing  issues which we are facing now.  Monitoring every bite and thickening her drinks to make sure she doesn't aspirate. It's a balancing act of medications, DBS changes, and Botox. He did increase the power going through her DBS and we have seen a larger range of motion already.   I really wish we had her in more physical therapy, but too late to change the schedule now.

We also grabbed her prom dress while in Ft. Worth.  We are keeping the dress under wraps until the prom. Her goals are to dance at her prom and walk the stage at graduation. 

We made it home on Friday, March 6 and Saturday Libby had art competition and I had AP scoring training.  It was a lot to push for after a doctor trip, but Libby insisted in staying through until the awards ceremony.  

Here is her art displayed, not the one with the mask, the three dimensional piece titled "Life, Liberty and the Pursuit of Art". 

Here's a better shot of it. 

This one is titled "Hope".  I love that both of her art teachers have found ways to help Libby make her own marks on the page. Grateful.  Oh, and she got two gold medals.  She's may have glowed for several days. 

On Sunday morning, our beloved cat, Jar Jar Binx passed away. He had waited until we made it back.  He is missed by his two and four legged family. 

Now it is Spring Break and I think we all need this time so desperately.  I haven't been able to fully process everything has happened and need to work through some grief of various kinds.   

Missing my Grandmother and unable to find a way to get my mom into a safe and healthy environment.  I will take all the blame if she would just let us get her into a safe place.   So many painful decisions have to be made very soon. 

We are also making the appointments to get Libby into college and figuring out how that will work. She has goals and dreams that we will support as best as we can.  The paperwork and obstacles are full of learning opportunities (pardon the bit of sarcasm). 

This weekend we are focussing on eating and sleeping, and a little ride in the country.  Time to recharge. 

I'll not be choosing but will continue to add to.  My heart grows bigger and makes more and more room for so much love and gratitude.   There is still so much to do and I know that with a little rest we will be ready. 

Re-birth

http://youtu.be/wuyzrqEA2DQ. "Red headed stranger"

On January 24th the love of my life left this world.  I was so very blessed to have been there with her and to have been able to sing her the songs she loved as she peacefully left us.  

http://youtu.be/C3PB1jWO3_E

"Angel flying too close to the ground" 

Her funeral was beautiful, getting to see my cousins was beautiful, everyone that could be there was there. My beautiful cousins were there, along with my brother. It was a great opportunity to share our memories and the loss of our pain

   But no one, not any one person will ever understand the deep systemic hole that has been left within me. She gave me the best of who I have become. Most of my drive has come from my desire to make her proud and live up to who she thought I should be.    

She gave me everything and I have spent many years trying to repay her.  She had been preparing me for her departure for years. Telling me that no one, family or other, could tear me apart unless I let them. That I am tougher than I know.   And that after the second or third time I bathed her, she was done. She said, "if it's come to this then It's my time...".  And then she'd ask me why I wasn't at school. And I'd say, "I'm here to help you..." And she reply, "you better go do what you are supposed to do. Don't you have some students to teach?".....  Yes ma'am.  Yes ma'am I do.  I learned to read and write before I was 5, sitting on her 6th grade educated and gnarled knee.  (As care of Libby has increased, I became unable to provide Grabdmother the help she needed; I sure did try though.)

http://youtu.be/sVqw1kHPLRc 

"that wasn't me"- she never gave up on me.

*****

I took the chance to share these thoughts during her funeral and here are the notes-----

We are all a part of a tremendously strong legacy. 

I am a part of every woman here who have sewn into me their love, their hope, their strengths, their failures, faults and fears, but mostly I have the stubbornness to never, ever give up-sewn into me.  

Too many times my conversations with grandmother would begin-

 Me-Grandmother what should I do?

Grandmother- Well, now, that depends on what you've gotten yourself into. 

(Then I would explain and tell her how

I had taken a leap, of one kind or another, and fallen flat- or worse, feared I would fail. And she'd tell me, 

Grandmother- One thing I know is that you'll never go backwards, so you might as well keep moving on.  

Me- but I've ....

Grandmother- one stupid mistake doesn't make you stupid, just don't make a habit of it. 

Me-But what if I fail? I don't want to disappoint you- again.

Grandmother- I would be more

Disappointed if you never tried.  

Me- but would you still love me if...

Granmothee- there is no if.  There is always. 

So, she has sewn in to me and so many others the strength to dream and doubt, believe and fail, love and be hurt and get up the next morning to begin again.  

She taught me to laugh when I'm scared, walk into every room with my back straight and my shoulders squared and face forward. 

When I failed, stumbled, face planted in my life, she told me that these were stumbling blocks and when I was ready I'd find my way to do what I'm supposed to do.  

She taught me it's okay to be poor, but not trashy- capable, but not proud.  Pretty is on the inside and ugliness seeps out and spreads. 

She taught me to be kinder than you have to, give more than you thought you could, and fill a need when you see it.  

She taught me that we are going to be held responsible for how we treat others, not how they treated us, "cuz you can't control anyone but yourself and for most of us that's a stretch anyhow." 

She taught me forgiveness, by forgiving. She taught me to believe, by believing and to love, by loving.

Mostly, she has shown me patience and forgiveness.   And a lifetime of my gratitude will never be enough.  

Thank you, Grandmother, for every ounce of my stubbornness and I promise to keep doing what you always said I would- I'll teach every day as if it were my last-

as if a beautiful soul like Geneva May Farley Bumpus is in every seat. 

And the greatest of these seeded blessings is a love to dance.  So if you see me dancing randomly, maybe I'm dancing with grandmother who's come to sharpen up my waltz. 

*******

I have told a few of my students that the reason I am there is because I need to teach and because they are supposed to teach me something.  Until  I KNOW it's time to move on I'll be "doing what I'm supposed to do" which is teach. 

Gratitude.  Humility. Hope. 

There is freedom waiting for you,

On the breezes of the sky,

And you ask "What if I fall?"

Oh but my darling,

What if you fly?"

Erin Hanson 

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.