The Fort

     We are nearing the end of our summer at lightning speed.  The last week of school the dryer quit drying and the kitchen sink started sinking with a large hole eroded though the bottom.   We had already signed up to teach summer school to be able to afford the Colorado (fun) and Waco (literacy conference) trips, so we just added to the "where the money goes" list.   Now, both trips are done and the sink has been replaced, along with the laminate counter top, and the washer and dryer are space age new.   

      Liberty has been very stiff, very, extra Dystonia and Spasticity for months.  (Unsure as to why this is as her DBS and Baclofen Pump have remained steady since her check up in April. The last round of Botox yielded limited effects as she is so very spastic it is hard to tell any relaxing of the limbs or torso. 

      We are continue to live our bonus days with Miss Libby. Traveling with Liberty is both joy and stress filled.   Ensuring that she has what she needs and yet is part of the activity is an interesting dance.  We travel with a special potty chair, pillow, transfer blanket, pads, pull ups, battery charger, meds, proper list of meds and doctors, regular wheel chair (pink beast) and her adult stroller (KAM).  Plus a partridge and a pear tree.    It's not much different from traveling with any other children.   You pack to fortify your child safely- and happily- through your adventures.    

        It was months ago that I came to realization that we no longer needed the special fort in our side yard that we had built for Liberty after the Lyme hit and while she was still walking with assistance. It had a special ramp with a rope rail and lots of extra safety features.   We made it her pirate ship and bought the flags and booty to go along with it. She has not been able to get up into her fort in several years, and short of carrying her piggy back style she was not going back up.     

       For the last year, every time I passed it I felt guilty and sad.    The beloved fort was starting to list according to the push of the wind.   Stabilizing it was beyond Rachael and my skill set.  It wasn't getting love and attention from Libby, and so it was untrodden, unused, and mostly abandoned even while Jasmin and Xavier sat occasionally on the swings.  The pirate's place needed a new life with younger kids and lots of love.  

       It is hard for me to keep things around that remind me of what Liberty can no longer do.  It is just hard.    I've kept her Legos and a few other toys, a teenage girl purse or two, a pair of boots she loved to wear, a baby doll she wanted to play "Momma" with when her memory first left, and lots of stuffed babies.   But so many other things have had to go.  Many of these things just need to continue to be enjoyed and loved.   No sense clinging to what was.  

Rachael, little Dottie, and Kim worked diligently to take the fortress apart. 






Finally 

      I asked Kim and Jeff, our beloved friends, if they would take the fort and allow their kids to wear it out.  Gratefully they agreed and the fort will be rebuilt and some parts repurposed to meet the needs of their beautiful kids: Tommy and Dottie. Now the fortress will get a makeover and hopefully lots of love.   Sometimes letting go of the things is as important as the process of getting them.    Years ago, I had to get Libby that fort as she really wanted one and she loved it long after she could use it.  Now, it is time for it to create lots of new memories.       

Leaving the Shore

       For years after Liberty's health tanked I was afraid to go and do anything that took us out of cell phone range, away from hospitals, and anything that took me away from her.    I didn't want to do activities that might wear my body out or risk injury.   I lived in fear of breaking an arm or rolling an ankle.    Didn't want to go the doctor because what if I ever got news that I wouldn't be able to continue taking care of Libby?  I would change anything at all, so I didn't go to the doc.   

 

In retrospect I realize that I was making choices with a guilt and grief clouded mind.  The past few years I have gone to the doctor and  allowed myself to let go of some of the fears. Started working out and pushing my body last year.   This alone was a huge step.   I can't be too tired to take care of the Liberty, but as I get older I have to strengthen and push my body so I CAN  keep taking care of the Liberty.    I had to leave the shore and let go.   Never thought I would want to run, but turns out I love it.  I've completed one official half marathon- at 46- and have several more on the horizon.  Look what was waiting for me when I let go of the fear.

 

Mariah needs me to be a strong woman for her as well.    She needs to know that the more that Libby requires the tougher we will all become.  It is terribly important that I show her that growth happens when we choose to embrace it.  

I have adopted this concept in several other areas of my life and even if nothing comes from the multitude of ways in which I have put myself out there, professionally, I know I will be further along that if I had never tried.   It is scary, and that is good for me.   I believe it is when we push ourselves past that fear that we grow.   I've got to shine the light on the things that hold me back and move on.  It is for my own growth that doing so is now necessary.     

 

Once I let go of the shore and started taking better care of myself by working out, I knew I couldn't let myself go back to the safety and be restricted by fear.   So, here we go.   Leaving the shore and crossing the ocean of our life.   I am blessed that I have a great support system that accepts my goals and endeavors.    I can't wait to see what the future holds as we all live healthier and more adventurous lives with Liberty.   For Liberty.  For us all. 

 

**Whatever it is that you wish you could do and never have, please make a plan to do it.   Leap with me.  I have faith that there are amazing things waiting for all of us.  

Living the Bonus

      

    Living with someone who has a chronic degenerative illness is like being in the eye of the storm.   We get up every day and go out with the intention to live our lives with purpose.   I might be able to forget to not pay attention to how much Libby has eaten, whether or not she has any skin breakdown, how many times she has gone to potty this week because we are busy living.  Meanwhile so many around us can get caught up in the fact that Liberty was once a healthy cantankerous child, and now her body fights against us in so many ways. So many only see the little body with the crazy hair and are saddened by her physical state. In the center there is a focus and we will just go and go and go and do and do and do.   She remains ornery, and we remain determined.   

     The storm Liberty creates has been building the more her body tries to stop us.  After the Baclofen pump surgery in November I have wanted to have a serious talk with her doc about what our forecast is.  About what I need to be on the lookout for as far as her health and any deterioration. 

      During her last appointment with Doctor Hottie, her main Neuro, I asked two difficult questions: Do you have any idea of a prognosis?   Do I need to retire early and stay home with her? 

       He paused, "I am not a fortune teller, but I have to be honest.  Years ago, when y'all first made it to me, she was progressing so fast, that I didn't think she'd make it this long.      She's twenty now and is somewhat stable.   Her Dystonia and Parkinson's will continue doing what they're doing, but overall she is stable.   What you've been living through lately isn't borrowed time; it's bonus time."  

       "Well, okay.  Guess I won't sell everything and head to Disneyworld."

        "You two already keep her busy and going, and if there are some bucket list items then I might start crossing them off.   Enjoying this time is important." 

           He teared up some as he spoke.  We continued talking about such weighty matters as if they were the weather.  We have to keep her weight steady and try to get her to gain some.   This weight loss is an issue that comes along with the Parkinson's and Dystonia package.  She is so tight/spastic, that she burns way more calories than we can get into her.  We do try to get more in.  And we keep trying. Her bowel and bladder issues also progress and we are limited in our interventions there.  This particular combo is not fun for any of us. 

 

         All those years ago during our visit with Doctor Hottie, he asked us if we would rather give her quality of life or quantity.  My answer was simple: quality.   Always.   So this idea of bonus time is a bit of a revelation for me.  I'm changing the way I think about the plans we make.   I am becoming more intentional about what we can put off for when we can afford it and what needs to happen much sooner.   I have moments where I am scared, but they are brushed away into the storm doesn't really concern me.  No time for fear- there is too much to do.   

        With this time we will go to the Canyon and hike with her.  We will find ways to get her to her favorite mountains, and hopefully to the ocean.  Don't get me wrong, we don't have a countdown clock and there is no depressing doomsday.   We are going to focus on the extra special nature of the blessing that is this day with our Liberty.   

 

Little Miss Stiff

     It's been too long since I've shared, and for that I apologize.   Like living in the eye of the storm we have been going 900 miles an hour in many different directions.  Liberty's photography class is going very well and she is enjoying her new attendant. Liberty loves going to Amarillo College and loves all her people there.  

      In January, Liberty got her first increase of the muscle relaxer Baclofen in her pump.  Before the pump was placed she was taking 100 mg by mouth every day.    She is now taking 12 mcg through her pump into her spinal fluid.  The increases have to be small due to danger of overdosing. The good news is that her mind has cleared somewhat and she is more vocal.   The downside is that she recognizes pain more often and is unbelievably stiff.  So stiff that she gets bruises on the back of her legs as her body tries to conform to toilet seats and her wheel chair.  So stiff that her whole body is rigid most of the time.   

     Due to scheduling her pump surgery at Thanksgiving, Liberty has not had Botox since before school started.   The difference in her little body is huge.  We hoped that the pump would provide more immediate relief, but sadly, that has not been the case.   As her Parkinson's and Dystonia progress, the stiffness will intensify.  We are pushing against the tide that continues to attack her neurological systems.   Each Baclofen increase should get us closer to  a more relaxed body; we hope.  

       Very soon we go to see her doctors and will get another increase of Baclofen in her pump, have her Deep Brain Stimulator checked, and get Botox once again.    Praying that she get some relief as we have no plans to slow down.  As long as we can- we will keep going.   We are going to live this life to the very fullest we can!  

     Blessings to all! 

On her birthday

 

You landed in this world

     Red headed and angry- on your due date.    

You raged until your sister sang to you

      And I formally welcomed you.  

You embodied your name

        Climbing out of your crib-before you could crawl.

You sang the notes to my music

         And joined Mariah's song.

You are the iron winged butterfly

         So delicate in body-with might in spirit.

You laugh and the other flyers answer 

         And we all rejoice.

You are carried so carefully

          And loved so completely.

Happy birthday my little love.   As long and we are able we will go and do and be all that we can.    

 

So little and all are so beautiful. 

 

And on this day you are 20. 

 

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