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