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. 

Powers

We have had our appointment with an attorney to begin the process to make sure that Libby is safe if anything happens to me and to be able to continue to take care of her. She is 6 months away from being 18. She has a bio-donor out there who has refused to see her or speak to me about her.   In the event of my  demise HE has more rights to Libby than Rachael or Mariah or anyone.  He has refused.   His loss. 

So we are going to push for Power of Attorneys and are setting up our own wills. If something happens, I have to know that Libby is going to be cared for in her home by the people who have raised her.  (I continue to pray that Mariah will have all the chances in the world to have her own life).  These are hard conversations to have.  Down to what happens if we both die?  Well, we set up a separate trust just for Libby, the girl who will be an adult. The girl who could have been given money to help with her medical and personal costs if

I'm gone.  I can't wait to have something in "power" like this.  I am pushing through this process and will share what I learn as I learn it.   

Here's some thing's to talk about: 

1. Whose name(s) is your real property in?  If it is in one name and you're married or a parent/child then that property may be headed to probate. 

2. Whose names are the bank accounts in? Is there a right if survivorship in place on those accounts?

3. Do you have a list of names who will take care of your kid(s) if something happens?  This is right of succession?

4. If you divorce (the statistics for parents of Special Needs children going through divorces are terrifying) who takes care of the kid(s)?  Who handles the medical coverage and decision making?  

5. Who is in the Right of Survivorship? 

6. Who would be the guardian of the person and/or the estate? This includes the guardian of the trust. 

7. Who would be the Executor? 

You can state in your will that you want Murphy, the dog,to have a bath every month and to be brushed every week, but that's not legally binding.  

Please start thinking.  It's not morbid. It's about working with the Powers to make sure that your loved ones continue to feel your love.

What's that smell?

How many times in the past few years have I thought that I was broken beyond repair?  That there was nothing let inside of me that would keep me moving forward.  Recently, while sitting in one waiting room, or another, praying and trying to breathe, I noticed a "smell".  

(I associate smells with emotions.  Always.  The pairings can change.)

Not a real smell.  Not like fresh skunk, feed yards, Lysol, cheap candles or teenage funk, but a definate smell. This was familiar and yet unrecognizable.  This smell is one that clings to you. Wants to hang around and become a part of you. 

Looking around the waiting room I see the familiar look in the eyes around me of worry, fear, pain and hope.  These people are here because they have a child who is being operated on.  I've shared this look with them in many holding areas, where feeling your own fear and hope has to take precedence over empathy. It's not just the look we share, it's a smell. 

Desperation smells funny. Not bad. Not good. But for sure, it is detectable to me. I've been eating "eau du desperacion" for too long.  Desperate to get through. Desperate to find answers. Desperate to accept answers and results.   Desperate to keep her happy. And alive. And comfortable. Desperate to comfort and guide Mariah and protect the rest of our loved ones.  Desperate to be able to continue to teach.   And the double dip of stench- desperate to not seem desperate and smell like it. 

Instead of hiding my desperation, I think I should wear it like the crown of victory.   In order to even acknowledge this feeling, I have to admit that there are real, painful, irreversable possibilities in Libby's life.  Smell it? I do.  

Instead if hiding the broken-ness I think I'll wear them with an evening gown and put my hair up.   

Being desperate also means that real decisions are made. Hopefully, these decisions are thought through.  Hopefully,  the protection of fools will hold fast. It was because of that reek I've been wearing that Libby is now a battery powered super teen.    

How long until I know that I made the right choice? I have no real, factual idea, but I do know that it'll most likely be the day I get this damn smell off of me.  

Desperation smells funny and I believe I'm done wearing it. 

Ten days past initial programming and most stitches are healed.  

What does patience smell like?   And, more importantly, what about hope

A blog shared by Elizabeth Gilbert, author of "Eat, Pray, Love".   http://www.elephantjournal.com/2012/06/kintsugi-as-yoga-filling-the-cracks-with-gold-zo-newell/ 

Instead of hiding my brokenness, maybe I'll try to share it more. Maybe I'll fill some of the cracks in with gold-

Be brave

When we scheduled the DBS surgery in March we were also rather entrenched in reading and re-reading the "Divergent"

series.  One character tells another repeatedly to "Be Brave".   This is about the same time Sara Bareilles is singing about seeing us all being "brave".  

Since March we have written this statement on our arms, on Libby's arm, on notes to her, on our family message board- well everywhere.  April had these temporary tattoos made and Libby has shared then with a few friends and loved ones.   When the kids were getting ready to take their SAT test, Libby had me passing them out. When one of her school friends was going to interview for a summer job, Libby passed on a temp tattoo.  

So, friends and loved ones, be brave. 

We are two and a half hours into the DBS brain lead placement and be brave.

Libby told a teary eyes nurse that she was "ready" at 7:15 am and then Libby stated very clearly that she is brave.  

Yes, brave.  All of our supporters are.  Love and blessings. 

Ileana 

Eye of the needle

It is by some amazing twist that I am able to write at all.  I had no expectations, no hopes, only a desperate deal with God, the universe, and all things sacred that Libby would wake up from her first round with DBS, the brain stimulators, no worse than she went in.  Even the nurses asked me what we were hoping for.  I had to say that first and foremost I didn't want this kid to have any further damage because of our desperate "Hail Mary" of a radical surgery.   See further discussion in what desperation looks like in the future. 

It is Day 6 after her programming and must say that I am blessed.  Libby is different.  She still cycles through being loose and locked up, but she is looser longer.  

Her speech is clearer.

She is saying things like "my mouth is dry".  What?  You know you have a mouth? You can feel inside of it?  Two weeks ago you could clear your mouth by swallowing while you ate.  She helped to brush her teeth tonight.    

She worked for :45 minutes to form a pout with her mouth. She did it. 

This was day 5 after programming. 

Here she is day 2 after programming.  Holding her head up, on her own and lightly medicated, and rocking her smile. 

We are amazingly blessed. I am holding my breath and am not sure what each minute holds.  Several times since we've been home, I don't want her going to sleep because I don't want to lose who she's been for most of the day. 

All of the worry and fear. The preparation and planning. The amazing support and the personal realizations and repenting. 

We may be heading through the eye of the needle. 

I still have no hopes from day to day, other than no further damage or regression.   

No hopes so I won't be left broken any further. No hopes so I can get up in the morning without fear of being let down. 

I do feel something that is hiding, it may be hope.  There is always hope. 

This blog is amazing and it keeps

Me humble. She lost her daughter on her journey. I have read her blog to prepare myself.  I am full of admiration and gratitude.  Full. 

https://m.facebook.com/sharer.php?u=http%3A%2F%2Fwww.chicagonow.com%2Fmary-tyler-mom%2F2014%2F07%-cake-with-numb-frosting-please%2F&display=popup&_rdr

There is always hope.  I'll let y'all hope for us.  I'll be testing Libby's changing motor skills and asking her questions and singing. Lots of singing with the kid. 

http://youtu.be/_w8vFua_iWk

This has been my theme song for awhile how.  "Eye of the Needle" by Brandi Carlile.