Betweens

One of the things that is a bother is the between times.   The moments between doctors' calls, consults, research, appointments, and the waiting. The waiting for the return call, to get in to the room, for the doctor, for the information, for the insurance clearance, for the prep for the procedure, for them to take her away- the in betweens.  It is always these moments that are the heaviest to carry.  These moments when there is only waiting to be done.   Sometimes you have a bag of clothes and items that represent your child which you hold on to until whatever is done. Today we are sitting with the empty chair and waiting.  

Today, we know our waiting will come to a positive end and our daughter will return to us and her chair will be filled. Too many times and for so many others, the between times are terrifying steps toward the unknown.  But for us, on the day, we are having Botox throughout her upper body,under anesthesia, so it is not a long nor a scary wait.  But it is still a waiting. Then we wait for her to wake up and head for the actual doctor's visit.   Then we wait for the next referral to a surgeon who can do the similar surgery to Liberty's upcoming Achilles' tendon release, except this surgeon may save her hands from complete retraction. 

Instead of ever allowing the "what if's" to camp out in my heart, in between times I focus my heart on the many children and adults who I love and who may need special thoughts.   I let my mind wander to who has caused me pain or has been in pain themselves.   The past nine months have cost me several friendships and the loss of family members.  Not to mention the emptiness left from the many family deaths in the past year.   For these losses I pray in between for there to be peace and acceptance.

My belief is that those who hurt others are hurting.  Those who hurt- hurt.  To these I send my hope and prayers.   To these I send bits of joy and peace.   This lightens the waiting. 

I always carry thank you and bless you notes in my bag and it is interesting to whom I find myself writing.   Some notes don't get sent because they don't, but most do.   Because in between I have lots to be grateful for.  

In between, when worry, fear, and grief could creep in, I send out positivity and hope. I can't ask that my child be blessed if I am not blessing others. 

Moving on

We are still processing the fact that Miss Liberty did graduate.    It seems so unreal and sublime.  The moment she did her walk to get her diploma and then made it safely back to her chair I felt as if a million pounds had been lifted from me.  Her goals when she agreed to have the Deep Brain Stimulator's implanted were to dance at her senior prom and walk the stage. And heck yes she did both.   We had the amazing support of every senior at Caprock cheering her on every step of the way.   We also had the amazing support of the staff and administrators who totally get the belief that 100% means 100%. Every kid matters.   Could not be prouder of this astounding group of people! Grandma Linda, Jennifer, Xavier, and Jasmin,  Mariah and Tyson, Jeff, Thomas, and Kim Davis, and Beth Garza were at her graduation showing their never ending love and support. We would not be able to function without the endless strength and love from Rachael. So much has happened in the last five months that I didn't know if we would make it to graduation.   This post is about one of our battle fronts.

One of the forces we have been waging against is the contraction of the muscles in her legs and feet.  She has had AFO leg braces for four years and been getting Botox injections every three months for 18 months.  She has continued with therapy in school and walked as much as possible.  Still, her Achilles contracture has increased.    

The therapists through school did not want Libby in her AFO's because her muscles were pushing so hard against the form of the braces that she was getting skin breakdown and bruising. On April 15 we were told that Libby should not wear the braces unless we were transitioning between sitting positions:  from chair to potty to chair to car and so on.  A few surgical options were offered, but mostly Libby was to be sentenced to a wheelchair full time.  That was a week before her Prom. 

We broke the rules and she continued to work on walking with her braces and somewhat without.   Often her left foot is supinated to a point that she could walk on her ankle bone.  Her left foot also drags.  

She reached her goals and danced at her prom and walked the stage. 

http://youtu.be/-Uk2O5Gxd6g

"Wake me up"

I will not give up until every avenue has been scouted and every tried. 

We met with a local Bone and Joint Specialist, that was Senior Day, May 15,  who scheduled us to see the surgeon he works with. We met with the surgeon yesterday and Libby will be having Bi-lateral Achilles' tendon release surgery in a few weeks. This will happen here in Amarillo. This is a day surgery and will be relatively non-invasive. Except the little fact that I skipped right over.  

Libby

Will

Be 

Sporting a 

Calf 

Length 

Cast on

BOTH

Legs for up to 

SIX weeks. Yep.  Skipped right over how we are  to move her around since she shouldn't be involved in any weight bearing movements. Yep.  We are looking into how to transfer her safely and how that will work.  

Libby's only question was if she could have a different color cast for each leg. Mine was if I can still shower her if I keep the casts dry.   No thinking at all about how we would be getting her into and out of the shower- or anywhere.      

Logistics aside she will get some relief and hopefully we can keep her active and upright for as long as possible.  Today we began intake with a new therapy place and tomorrow we head to Ft. Worth to get her Botox and her battery charges adjusted.  

Please know we are immensely grateful for all of your cards, calls, texts, emails, thoughts, prayers, nods, and general kindness.  We are truly blessed and will begin "Operation Lift Libby" practice sessions soon. Funny videos to come...

Well, maybe we inadvertently already began our training.  Be blessed.  

Move onward toward college goals, art exhibits, and more life!!

Renewals

Jasmin carefully decorating...

The last week was short and stressfilled. Most weeks this time of year are a bit over loaded with long lists of to-dos and gotta do-too.   We had EOC testing and that meant altered schedules and early mornings and shorter lessons.   My AP students are very close, 22 school days, from their AP exam.  And that alone is a bit nerve wracking.  As a teacher, we can only do what we know how and keep learning for and with our students.    

There are other hard and heavy hearted decisions that we are making for the benefit of those we love. No matter what, we will do what is right and best for all involved. 

Libby did her best at her extra walking and I am very proud of all of her brave efforts. She is very excited about her prom and she still doesn't know about being nominated for Queen.  I told her about the Prom King nominees and she said "all nice, cute and all my boys".  There ya go.  To her every one in the senior class is her friend and she is already starting to realize that after graduation she won't see some of the them again.  

She has a picture of her prom date that one of her art teachers gave her, she calls him "sweet".  I asked if she meant her sweetie, she know "no, just sweet boy". Yes Libby, yes he is. 

Xavier needed a little space and no I did not turn it on.  He's such a little turkey man! (I did have a talk with him about hiding places and safety. Dryers, although appealing, not safe hiding spots.) 

This Friday we were going to celebrate Jasmin and Xavier's Adoption Day by fake camping on our property. Camper is cleaned and tent ready, then a cold front came in.  We had a movie and some food.   Things change. We did get to spend some quality time with Mariah and Tyson as they came down Friday night for the festivities as well. It was great getting to see and spend some much needed time with them. 

Libby and Jasmin chillin'.

Notice Sparkles, the incredible bear, photo bombing is! 

Last night we dyed the eggs and it was a egg-ceptionally funny. 

Dye-ing is lots of fun and scary. 

Libby was very spastic and a little scary with things that stain. 

Xavier is very serious.

There's that smile.

Easter came a long bringing more family and lots of future hopes. 

Libby wasn't moving very well, so we watched the kids. 

The long promised s'mores...

Xavier is not a fan of the fire. 

Libby dozing off.

Time to put the fire out means a few of us got wet...

http://www.youtube.com/watch?v=35OGKtmDth4

http://youtu.be/35OGKtmDth4

Jasmin is almost as long as I am!  

I know this is a lot of family pictures, but it is in these little acts that we carry on. Knowing that we have a fake camp attempt coming up means a lot.  The weather is only getting better.   I know there are huge, painful and what could be overwhelming decisions coming ahead of me.  But I don't operate from a state of fear. I'll have to let hope continue to drive.  

**13 days until the prom** 

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.