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!