Not on My Watch

Warning: I will be discussing potty issues.  

We are six weeks into the semester, and it feels like we’ve been at it for much more.  Going through the days like running a gauntlet. Every semester is this way.   Libby loves her art class and instructor at Amarillo College.   

Working on and talking about art make her happy. Being a part of Amarillo College makes her happy and for that I am grateful.  

It’s been roughly two months since she had Botox and her Baclofen pump refilled and dosage increased.     The effects of the Botox will continue to wane and be less effective as her Parkinson’s and dystonia push harder against her body.   

People don’t want to talk about potty issues.  Nor is bathing and dressing someone who is disabled an easy conversation. It’s not as if I ever wanted to know this much- much less live with it everyday.  Embarrassment and inability to control are part of the reaction Libby gives us.  Too often she doesn’t know she’s pottied until after it has happened.  This incontinence is not my favorite, nor is it hers. No one wants to get the message that Libby has pottied again and needs a change of clothes.   Just not what I ever dreamed we’d be dealing with.   Yet here we are.   

(Yes we have seen a specialist and may return again. The interventions for lack of bladder control are not glittery.) 

Yesterday, September 30, Rachael loaded Libby up and took her to serve at the Buddy Walk of 2017.  This is an amazing group of people and providers.   The Panhandle Down’s Symdrome Guild are amazing in their work to support the families of people with Down’s.  

Jasmin, Xavier, and Grandma Linda were there to cheer and help out 

My Key Club and ROTC students were there is multitude. It is truly amazing to see so many young people give up their timeto serve others.  I made it to the park as soon as the run I had already signed up for was over.   

All of the little things we do every day to keep Libby happy and healthy don’t matter if  we can’t stay ahead of the body changing curve.   Her body pushes back against our efforts at every turn, and it’s hard knowing that.    We want her to be out and about, sharing her smile with the world.   Sometimes it’s too hard.   We have to weigh and consider how much energy she has and how much of it we can spend.   She can’t be stuck at Home dwindling away.   

Not today. Not on my watch.  Not for as long as we can.  

So we keep running through the race.   We just keep going on and on.  We have to.   We get to.  We are blessed with the charge of loving both of our kids and keeping Libby happy and healthy.   Everyday is a new challenge and everyday we find new ways of getting through.  In this way we will carry on.   

Be blessed.