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. 

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.  

Graduating and Pictures

 

On May 10, found us at WTAMU to witness Jennifer Howell's graduation with her Master's in Speech Communication.  A beautiful moment to witness and a proud moment to share.  Congratulations! 

Following her ceremony, we headed to Palo Duro Canyon to have family pictures made.  I will tell you that the planning and scheduling of this little get together was like nailing jello to the walls.  (These family pictures taken in the Canyon were supposed to be partially a gift to Mariah since she asked for the whole family last year and for Adoption Day.) The photographer had a change of plans, then we had to schedule to make sure we had the kids.  

And so, finally, it all came together the day of Jennifer's graduation and day before another's day. We just had to celebrate everything at once. And it was HOT! Only a few meltdowns, but still a great time to be together.   I know that we got some amazing shots of our group.  You are all my heroes!

http://m.deseretnews.com/article/865602761/Alex-Boye-mom-bloggers-celebrate-Mothers-Day-with-Katy-Perry-Roar-cover.html?pg=all?ref=https%3A%2F%2Fm.facebook.com 

 

  Just a few sneak peak pics.  Hopefully more coming soon!  

 

  Indiana Jones hat, Blues Brothers shades and Bat girl outfit- who's styling now?  Palo Duro Canyon is my favorite place on earth, besides my home.  Libby takes on a special glow when we're there.  Sweet girl only complained once about the heat.  She is such a tough girl! 

Trying to get a lift from SuperBoy!

Here's the fam, minus Mariah who was at work.   

There were some teary moments throughout this day.  With Libby's surgery looming over me, every tangible moment is precious.  These pictures and the time in the Canyon mean the world to me. 

Thank you to everyone who was wiling to be a part of this very special day. 

Mothering in the line of fire

School is an emotional warzone.  The end of every school year is always a whirlwind of excitement, joy, and exhaustion.  This year has felt more like an endless boot camp.  As if I have been preparing my kids for an continual battle and my classroom is the frontline.  Every scantron is a weapon wielding levels of instruction and destruction. 

My classes full of juniors have tested their brains out and are still testing.  We have taken the PSAT, EOC 1 and 2 retest, semester test, benchmark every six weeks, SAT, EOC 1 and 2 retests again, TSI and now we are facing the second semester test.  These kids are my heroes.  They have given their all and more.  Some have shut down because they have not passed many of these tests.  Some have dropped out.  How do I/we keep putting these kids in front of the line of fire?  We try to prepare them, teach them, bolster their confidence, model hope and pray, yet it may not be enough. 

I am amazed by how tough these kids are and how willing so many of them have been to keep going into battle. I am grateful to have been placed in the class and grade level that I needed to be in.  I didn't know last summer that I would still be in the classroom, but I am glad that I have had this opportunity.  This group of kids had some lessons to teach me. I have learned tenacity and diligence.  I have also learned to keep looking out for what is coming and plan accordingly.   

 

Having Liberty in class has taught me a higher level of patience and a greater amount of planning than just about any student so far.  Although it has been trying, I know it will be an experience I'll always treasure.   

With lots of help and guidance, we have managed to have her take the SAT with accommodations and next will be the T.S.I..  She may not have to have these tests for her future, but I feel like it is important for both of us to have the experience.  Plus we get to see how Libby does under pressure get an idea of where she is cognitively.  I was so proud when several kids were called out of class for testing and Libby said, "do best".  It came out very clearly and it touched me to hear her cheering her peers on. 

The Class of 2015 has my heart and pray I that all their time in the war zone has not harmed them. 

  

We think that EOC scores will be in within the next few days. 

 

Then we plan our newest attack strategies and return to the frontlines.

 

Note: No administrators, counselors, teachers or others who have control are being  blamed here.  Simply sharing my observations as a mom and a teacher. 

 

 

 

Envy is evil and ugly

I wish I could say that I have never been green with envy.  I also wish I had a true, deep, humble appreciation for everything I have.  I know I have blessings that others only dream about and pray for.  I know I have way more than I deserve. (The idea of what we deserve is a whole other topic.) 

I admit that I have been more envious than ever before in the past few years.  Friends with kids my age are taking trips, alone, as a couple. They've added on to their homes, not made theirs wheelchair accessible. They are able to dress according to desire and whimsy, not planning around the weather, Libby's ability or inability to move, and avoiding any shoes her wheel chair may run over. They are going browsing at stores, taking art classes, other such other-worldly stuff.  In that far off pasture where the grass is shockingly green, they do stuff that I can't do. They are people I can't be.  They live like I never have. 

Envy is ugly and it doesn't look good on anyone.  Other people don't have Libby and aren't continually blessed by Mariah's ability to overcome and be. Other people haven't learned many lifetime's worth of lessons with such a beautifully spirited teacher.  I can't, we can't waste our energy wishing for and wanting what other people have.  Comparisons deny the gifts and blessings you have. 

Thursday, July 24 will be two weeks since Libby received her first programming session.   There are many slight changes, little things that we are seeing that aren't predictable. Of course, this kid's never been predictable.  I know that I am grateful that she made it through the brain stimulator implants almost a month ago.

 I am grateful that the laundry list of possible side effects stepped by us.  Libby was able to "swim" during our stay for my training.  Hoping the DBS will ease her fear of falling and more of the Dystonic symptoms.  

She has been healing at such an amazing rate.   I can't allow for envy to creep in when I have these smiles.  One of our few moments of heading to the pool.  Joy at there being a lift making it much more accessible.

Other people may be able to do so many other things that we cannot, but we are able to find moments to rejoice that are unexpected.  Our life isn't less, it's just different.   

Love people, and don't wear envy.  Remember that your life is differently blessed.  

Monitors: the good, the bad, and the icky

Baby monitors are a mixture of good and evil.  Good is that I can hear when Libby is really upset.

Bad is that she knows we come running- even if it is because her arm is cold, or she misses the cat that died 13 years ago, or I wasn't home earlier and she just missed me so something hurts.   The trick with our kid seems to be figuring out what she really needs versus what she's summoning us for.

This is true with all of us.  We use various systems to monitor each other and to reach out.  Phones, emails, Facebook, blogs, Instagram, Twitter and the antiquated letter. Whether we realize it or not, it is human instinct to reach out when something is amiss, even if we don't know what that dis-ordered ick is.  So many of us are walking around and if we had a baby monitor attached we'd be beeping like crazy.  

Some eat. Some shop. Some give every minute to others to avoid their ick. Some work out. I create. 

School let out last Friday. Beep. On Friday I learned of my new teaching position. Beep. I began teaching Summer school Monday.   Beep. Many people are joining us in Ft. Worth to support us for the surgery. Beep. Money. Beep. 

I have been in a manic phase for the last month of school because I knew that I had to get my world in order before Libby's DBS implantation surgery. There is little in the house or classroom that I haven't organized, cleaned out, and/or painted.   

Rachael, ever patient with me, asked yesterday if I was about done.  Yes.   Almost.  I don't share the list in my mind since no one needs to know that I'm on contingency plan q for after Libby's surgery. Beep. Beep.

Want to know what my state of the union is? Ask how much I've been painting. Writing. It's like nesting only a middle aged version of it.  

So monitors are good and bad.   I need to learn to pay attention to mine.  We all need to know our "beeps" and learn our ick coping strategies.   

Share your beeps. Reach out. Reach in. Don't self destruct, that's easier than dealing most times.  

(I am at peace with the DBS, it is not knowing what level we'll be leaving the hospital with that causes planning ahead.) 

Blessings.  

Funds and feelings

The Happy Girl Scouts held an amazing fundraiser for us last weekend. There was a silent auction which included two Kenneth Wyatt paintings, Glen Dougherty brought in an antique toy tractor, and many other amazing donations.  There was a baked potato bar and donations were accepted. The money will go into a separate account to help us with the lengthy stay we are facing around Libby's surgery. We are humbled and grateful beyond belief. Many thanks to all who helped prepare this event and to those who donated.

We report June 26th for paperwork, brain implants go in on the 27th. Libby should be released on the 28th. We are to return on July 1st and the battery packs go in on July 2nd. She should be re-released in July 3rd.  I will not be driving her almost 300 miles home in between the hospital stays. We will be in a hotel room resting and healing.   I am just not okay with being so far away from her docs between surgeries.  I want to be within a mile or two of the hospital. 

Libby has agreed to this surgery with the condition that her sister and her cousins be there.  We will do everything we can to make sure that Mariah, Jasmin and Xavier are all there.  (The rest of us are chump change apparently.)   

I cannot stay in the Ronald McDonald house for many reasons. First and foremost I just can't.  I become so overwhelmed by the pain and fears for their children that I forget to care for my own.  Early into this journey, during hospital stays I would not be able to eat or deal with my own fears for my own child because so many others are so much worse off than our Libby. 

I need to be able to focus on her and our loved ones.  This trip especially, I'm going to need to cry, eat, sleep, pray, cry, and even drink privately.  The dam that has held my emotions at bat for so long cracked a few weeks ago.  After sobbing uncontrollably at school while on the phone scheduling this surgery, I have cried quite a bit.   Okay, a lot. 

I wish that my mother and Grandmother could be there, but I am not sure how that could happen. Grandmother is 97 and though amazing she is frail and doesn't travel. My mother isn't mentally or physically stable enough.   

When Libby is in the hospital Rachael and I sleep in her room. When she is out we generally stay in the motel that is as close as we can get to the hospital and is affordable.  One day we may need to take advantage of the amazing Ronald McDonald houses, but not yet.  

We have not asked for any monetary help but are very grateful for every one's support. Whatever form that support comes in. 

Planting is some m&m's to see what the Easter bunny will

Bring.... Happy Hopping and feel

As blessed as you are. 

Prom pomp and Circumstances

Grandma was there for final alterations and to give advice on everything. We did meet Mariah and eat a nice meal before prom. Quite the blessing. 

Miss Beth Garza and Liberty- aka Betherty.

Not that either of us cried while holding her up and dancing.... 

Liberty and part of her class. 

On our way to prom and I admit to being a bit excited.  Getting Libby dressed  was interesting. The dress alterations and booby coverage were complete.  Libby even has on makeup.  Have to say she is a beautiful child- young lady. 

Irony is that the theme was "Once Upon a Time". 

Chair dancing!  She wasn't happy unless she was being helped and held up!

Two of our beautiful peeps who wanted to dance with Libby.  "Shorty get low, low, low..."

Notice Rachael getting a real workout holding the dancing queen up! 

I asked our Floral Design teacher to make a corsage and boutonnière for Libby and Rachael. Here, we are slow dancing. I am crying.

Prom and our circumstance. Very different from our dreams.  But grateful to have her here. 

Our lives are upside down and backwards, but we are blessed. 

http://youtu.be/xwsYvBYZcx4

The final picture is of Libby and I dancing to this song.    That's us.  "You're crazy and I'm out of my mind..."   

Thank you Rachael for holding us up. 

Thank you God for the chance to dance with this child at her prom. 

Genetic testing

Dr. Hottie and Mr. Surgeon want Libby to have a very unusual genetic test done, before the DBS, Deep Brain Stimulator surgery. This test would only give them, the medical folks, and us, more information.  The trick is that they would like for both biological parents to also be tested. Have searched and reached out for the other bio and no response. 

This test is the Whole Exome Testing.  The WES gives an exome by exome mapping of participants.   By testing Libby we will learn something that may give some answers and maybe even treatment options. 

The info came in the mail today and I was not ready.  We got Libby bathed and had dinner. I opened the package and was not prepared.     Some things you know are coming and you put them in a box for later.   Then, like a jack in the box, they spring up sooner than expected. 

Sorry it is sideways. This is the note attached to both of our permission slips. 

If you had a chance to have genes really checked  out would you?  

What if my WES says that I've passed this on?   (Then I couldn't control it.)

What if it says I didn't? (Then what if it is the other genes in her system?  Or, what if it is Lyme and there is no genetic marker?   

 

What if nothing is found in Libby and something is found in me and not Libby? 

The "what if" list is long and arduous.  It boils down to possibly "my fault" and "not my fault" or to "under my control" and "not under my control". 

When I asked Rachael to pace and talk to me that was normal. Sitting down in the middle of the little intersection to look at our property and talk and think was different.  A sweet neighbor asked, "do you need a bottle of water?" Which tells me I may act a bit more differently on a regular basis than I think.  "No, I need to think....and the perspective here is great." 

Would you? Is information always valuable?  Information does not have emotions; it is data, without feelings.  We bring our own junk to the table when we talk about information.  I believe in truth and have faith.  Now, gonna put this back into a box until we get past prom which is this Saturday.  

Libby is going to Prom- junior year.....

And a box with "incidental findings".... Prom and her glitter bra and dress are more important right now.  Yea, glitter bra.... Ugh