Dam Mom

     Greetings from the land of mourning the end of our Holiday Break.  Rachael returned to school last week; I start back Monday, and Libby starts a new semester the week after.  I have to say that for the first time in my teaching career I have avoided school work.  (I have read some educational articles, but that's it.)   I have slept, watched entire seasons of various shows, eaten, and run a lot.    I've tried to concentrate on recharging and focusing myself.   

      **Liberty turns 20 on Monday. I'll just let that sink in. 

      Libby has become the complainanator.  She is saying a lot more, that is clearer for the most part. I think that having the muscle relaxer, Baclofen, in her blood stream has helped her brain begin to clear.   She has a new laugh that is completely different from what she had two months ago.  

       Mariah and I took Libby for her Post-Op checkin and first Baclofen increase yesterday, a fast and furious trip that was well worth the time with Mariah.  We got to use the family theater room after we got to the hotel Thursday evening; it was awesome!   Getting time with both girls is priceless.  Having a grown child who is so fun to be around is a blessing.  

 

       

     The appointment with the neurosurgeon went very well.  Her DBS was checked and it is still doing its thing. Her pump incisions are all healed up and look great.   She has gained two pounds!  Not sure if that is the pump, the holiday foods, or me being with her more to nag.   She is now getting 140 mcg of Baclofen into her spinal fluid.   That is a 12% increase which is a good increase according to the physician's assistant in charge of Baclofen pump check-ins.   

      **Liberty turns 20 on Monday. Yep.

     We are asked constantly if Libby is getting better.   That's a hard one to answer.    The multiple conditions attacked her body don't really get better- they get treated.   The pump should relax her so that she will be, hopefully, more comfortable.    That's the hope.   

      Hope is a dam that has worn thin holding too many wishes safely aloft.   Liberty is not bending to sit very often any longer.    Hasn't been since maybe the summer.  She planks back into chairs, toilets, whatever.  Her back and legs are almost human boards, so she complains a lot.   But she can't always place the discomfort with right part of her body, we play find the pain/itch/cold spot/what the heck ever all over her little body.  She also hasn't been sleeping very well.   This is Dystonia and spasticity attacking intermingling their insidious tendrils through her body.   Any relaxing of her limbs and torso will be a blessing, but a dam doesn't go for some or a little or any. A dam strives for all.   

      I'm a DAM momma. I'm here to hold back all these threats against this child and her body.    I'm here to push for increases and treatments that will give her relief. I'm here stave off the complaints as her body  adjusts and fight back when her body can't.  I'm also here to nag, push, love, cajole and support both of my beautiful girls.     (I try to be a dam for Mariah as I can.)   

     We are blessed beyond measure and we are going to strive to go and do more.   We are going to live our story.  

       

Boring info...

      We don't go back until April and then it will be refill time.   Her pump has an onboard warning beeper that will sound if she gets low.   Yep, her belly will literally beep.   Fascinating stuff, here is more information http://www.medtronic.com/us-en/patients/treatments-therapies/drug-pump-severe-spasticity/what-is-it.html

    The Deep Brain Stimulator was implanted two and a half years ago to slow the progression of Parkinson's and spasticity.  

    

    The pump and DBS are amazing devices that are slowing the hateful and consistent progression; they are plugs in the dam.   

Be blessed.   

**Special thanks to Kristen Flowers and April Wolterstorff for Special Mommy conversations.   You make me want to be stronger and braver.  

**Liberty 

turns 

20

on

Monday. 

The Giving of Thanks

     The crispness of the air bites through as fall has slipped into winter. The autumn decorations have been put away and Christmas is everywhere. We had our Thanksgiving meal late and it was wonderful. Christmas is here and this year, like most, will be different for us. 

      Liberty's surgery was a success.  She now has a Baclofen pump in place.  She has been without muscle relaxant pills since Monday, November 21 at 4am.   She is not really looser, but her movements hint of the benefits we may see.  Her back, where the surgeon opened her spine, has been painful and bothersome.   Luckily she is healing quickly.   

     Monday will be five weeks post op and we are out of school.  Having truly seen Libby, in all her fragility, I am struggling.   I want her with me; my eyes on her.  She is excited to start back to school, and I just want her safe and happy.  I blame the added stress of this semester; there isand always will be so much to be done.  

     In just a few short weeks we will be making more major decisions in the day to day life of Liberty.   As her diseases progress, we have to choose how her days are spent.  Remaining adamant that Libby not sit at home all day, everyday, I can't allow her to become a couch potato.  The image of her just sitting there, vegging, breaks my heart. She  is still there, in there, and remains Liberty.     I don't want to allow her to lose her self. 

    Although, she can continue to take a few classes at our local junior college which may be determined by how the Baclofen pump affects her.   As we go back to Ft. Worth every month to increase the dosage pumping out of her pump, she will be losing, hopefully,  her lower body spasticity which may mean that standing to transfer from seats to wheelchair may be complicated.   We have her first increase in a week.  

      Tomorrow is Christmas and it is the first without my Mom near us.  Our Happy family will be celebrating Christmas  on Tuesday and Wednesday. 

      Regardless of when our celebration happens, we know how very blessed we are.  Pray you all feel loved and cherished throughout this season.  

Ileana 

Grateful for all who continue to cheer us on.  Pray 

Staying Afloat

       Today was a long day: one handsome  Neurologist, 20 injections, a Neurosurgeon, and a group of nurses I really care about made Liberty's double appointments enjoyable.  It was the whole facing the status of Liberty's conditions that tend to drag a Mom down.   

        Today I agreed to something that I once thought I would never want.   Agreeing to have a Pump put into my baby's abdomen was not on my acceptable list.  It's only been seven years ago this week, October, 2009, since Libby's body quit working and we were stumping the doctors at a hospital in Lubbock- a lifetime ago. Since then our reality has changed drastically and so, we adapt to try to keep up, and maybe someday, get ahead of the torrent that is Liberty's health.  

 

    Today, I finalized the schedule to have a pump placed inside Liberty will have a catheter running from the pump to her upper spine. The Pump will allow her to stop taking her muscle relaxer five times a day.  Part of her Brian fog could be gone.  This will, hopefully, reduce her spasticity and give her some relief.  Imagine the stiffness and pain caused by a very long muscles cramp in your leg.   Now imagine that tightness without the pin and needle sign of relaxation.   Yep, that's spasticity as it was explained to me. To me, understanding her pain feels like drowning.  

     Liberty hasn't had her Botox injections since the first week of June.  Her spasticity relentlessly increases; a lake after hard rains. She has dropped more weight; a side effect of her spasticity. Now, we will climb back on our raft of stubbornness and hold on until our date arrives.   

       We also drove to Dallas to visit my Mom in the hospital.  Her falls have made her upper arm break worse.  The move has been hard for all of us. Praying for all of us to adapt and find happiness in this new adventure.   

       Today, I choose to not let the assumed prognosis and the deluge of symptoms we aren't getting ahead of stop me from participating in this day.   And tomorrow.   And the next.   I will make sure that Libby keeps going and living life.   Period.  Now, I need to sleep.  Tomorrow, we have new waves to ride.   

Roll On

      Days are passing- cars in the highway.   On and on we go. School, volunteering, work out, sleep, plan, read, and pray in an endless cycle.     

      Two months ago I sold the Wii.  I got rid of it because Libby can only watch others play.     She wants to play, but her body can't. I couldn't stand to watch her just watch others play. My job is partially to keep her in the game. Active.  Not a spectator. I sold the Wii for very little money.  It wasn't an admission of defeat, just fact.    

       Today, I took her Amtryke back to a drop off area for Ambucs.  She can't hold herself up, her arms and legs don't move in the way needed to "ride" her tryke safely.  It looked differently four years ago.   More safety and support was added three years ago. As her Spasticity, Dystonia, and Parkinson's progress, her body just can't. 

        I admit to having cried a little after I returned it.  Walking back through the local shopping mall.  I left the note thanking  the Ambucs volunteers for the many happy miles and the blessings.  Hoping that the tryke could live in driving someone else's happiness.   I let it go. 

 

      Can't isn't a word I generally use,  but painfully, it has to be said. Her body can't, and someone else may be able to use what she can't.   Some days I get to say that Liberty's illness is just so not fair.   It's not fair.  It sucks, but that doesn't matter. Because we could cry and whine, or look the facts in the face, get into a car, and keep rolling through the highway of our days.  

      Live today and roll on.   However that looks for you- roll on.  

      Be blessed my friends.  

Ileana

Seasons

       Five weeks into the school year and we are trotting along. The leaves are turning early,  joining the weather that has cooled everything down with long rainy days.  Wildflowers and allergies are in bloom.  Smacking of normalcy, we have papers to read, house to clean, and volunteer events to organize. And now, to finish cleaning out mom's house.  

       Four weeks ago mom fell and broke the top of her humerus.  Progressing through the hospital CCU, then the floor and finally a rehab focused nursing home, she has been away from her Happy house for awhile. The doctors wanted to keep her for a minimum of 21 days, and she made it 14.  Wish she would have played nice while in the rehab; she remains unabashedly stubborn to a fault and if she doesn't want to do something- she won't.  Period.  There is something awe inspiring about that kind of determination.  If there were an Olympic contrarian marathon she'd win.  Sorry friends, these are the genes I've been given. You can laugh now. 

       We moved her to her little house in Happy 17 months ago.  To my knowledge this is the only time she has ever lived by herself.  There were amazing moments of clarity, during this time, where she experienced some happiness in her independence.    And lots of other moments.  Now I will have to wonder if I have done enough.  Have I done right by her?  I know I tried.    I certainly tried and I did-

      The time has come to where my mom finally realizes that she cannot live alone.   She needs constant and consistent care with people who can convince her that having meds organized and going to doctor appointments are necessary.  Wonderful people who are willing and able to be patient.  Gratefully, my brother, David, and his beautiful wife, Mirtha, are welcoming mom into their home.   

      We've packed her house and organized what she needs and wants with her and what we can store.  All that remains is the cleaning.   The cleaning and the hope that she will find some happiness.   

      This time of year will forever be changed for me as it is when I will let go of mom.   I don't remember a time I wasn't worrying, caring, doing, nagging, and/or arguing with her. She pushed me over twelve years ago to get a burial plan and policy started.  It helps knowing that is taken care of; especially knowing she wanted it settled.  She isn't my biggest fan, but she loves me in her way, and would move mountains if I needed her to.  With a smile I can say that this whole obstinate thing isn't new.  

    This is the time of orange and deep green as the leaves mimic my life. All is changed now.  A  season begins for my brother and ends for me.   

Grabbing the Bull by the Horns

     Tomorrow is a big day for all of us.  Our public schools and Amarillo College both begin the Fall semester.   Mariah is ready to knock out the final steps in one leg of her journey.    Arranging her class schedule around what Libby might need is just one of the gracious sacrifices she has made.  Without Mariah's help we couldn't have gone and learned as much as we did this summer.   She's been a one woman force and I remain grateful for the time with her and all her help.  Having a grown child willing to be with you and offer help (insist on helping) is a special kind of gift.  

     Libby is registered for two glasses within her art certificate program and wait listed for another.   Our goal remains to keep her happily going and out of the house for as long as possible. 

      Rachael is taking over as head of her English department.  I couldn't be more excited for her and for her campus.   Knowing the big shoes she's filling has made the transition daunting, yet there is nothing Ms. Rachael Collins can't handle.  

 

      The spasticity in Libby's legs continue to cause her to have legs that stiffen and hurt if they have to bend.   It is a part of the Parkinson's and Dystonia.   She has been complaining more and more and all we can do is hope one of her pills will help it.  Mild stretching and massaging also helps, but she's not big on either most of the time.  We have an official, and insurance approved, date for her Baclofen pump installation.   We had to finagle quite a bit, but we have the date.  Botox in October and Baclofen surgery in November.    (I'll announce the date once I've talked with my bosses.)  

     We originally had this surgery scheduled for July 5, but insurance cancelled.   http://libertyslymefighters.blogspot.com/2016/06/we-are-on-go-morning-has-been-beautiful.html

 

 For more information on this implant http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Intrathecal_Baclofen_Therapy_for_MS 

     For this semester I have a set of goals that are so important to me that I am afraid of voicing them.  Excitement for the incoming seniors and my continued focus  on allowing choice in their reading and quadrupling the amount they write have driven me throughout the summer.  I am always willing to be reassigned, but I was delighted that I would remain working with seniors.  Truly, everyday I get to teach is a good day.   Truly. 

Indeed, we are blessed! As we move forward we will not shirk away from our challenges- we will grab hold and conquer.  This only works when we are united in our endeavors.  

Thank you all

for your kindness.  Be blessed. 

Ribbons

      Once you notice them, you'll see them all over.   They glitter and shine in the sun, flapping their time worn ends in the breeze.  Some phone poles boasting layers of school colors denoting who was playing against whom and then which teams were going to playoffs.  These ribbons hang on long after the pre-season workouts, pre-game planning, game playing, crowd cheering, and parents booing have gone. Showing us the recent history of our school lives in a long embedded color code of belief.   These colors, whatever they are for your school, are a banner of unity.   They are reminders of hope. 

      There is enough negativity in the world right now and I think we all need some spirit ribbons to remind us we are all one.    Because my beautiful people, we are all one.    Regardless of who you pray to, live your life with, vote for, and whether or not you Pokemon Go- we are all one people.  

       On our walks and jogs around Happy, I've been hanging up random ribbons on poles, posts, and fences.   With each ribbon I pray for safety and joy for those who pass that way. That's it; that simple.     

         Please join me and let's remind ourselves of hope. Hang a ribbon up randomly and add a little prayer to whatever God answers you.   

I've got yards of ribbon if you'd like some.