Crutches and Crutched

      This is a reflection on the lesson I am learning through some somewhat painful experiences.  Not trying to brag or whine, just sharing.    Everything I do impacts Libby’s life- especially the things I fail at. 

       Last weekend, we divided and conquered as we signed up to be two places at once.  I had signed up long ago for a half marathon, the Mayor’s Half, and the Buddy Walk is a big event for my Caprock Key Club and ROTC.  I got up and headed to run my third half, and the final one for this year.   Rachael got Libby up and dressed and headed to the park to support the Panhandle Down’s Guild.   

      I was excited and apprehensive, as I am on any race day. There were pace runners available to help guide and keep us on track for our desired pace.  I was able to keep up with the pacer for three solid miles, which are always the hardest for me.  Excited that my training was paying off. Well, I tripped and fell at mile three.   My right wrist and left knee caught my body weight as I landed hard.  Thank goodness I had chosen my full length running pants or my knee cap would have been a bloody mess instead of the little raspberry I’m rocking.  

       I got up- painfully.   I got up and continued.  I didn’t know what else to do like so many other times in my life. I kept going.   Somewhere around mile eight I saw my friends, Tracey and Jamie Morman, and told them I had fallen long ago.   I just needed someone to know that I was trying to make it, and I was injured.  

       I finished. I finished the full 13 miles.   I finished and hobbled to the car.   I finished because I don’t know how to quit. When nothing else makes sense; keep going.   

      Drove to where Mariah lives and showered, then headed to the park where the Buddy Walk was happening.   I lost 45:00 after the race trying to get to the car, into the house, showering, back into the car, and to the park.  I noticed my knee swelling as soon as I stopped running. Not feeling so good and not moving very quickly.    

       We stayed at the Walk until it was pack up time and headed to meet the family for my birthday lunch.  My knee was getting so big and stiffening.  

        I am grateful for people who love and care for me.  The meal was wonderful and it was great to be able to sit with these people. It was at the restaurant after Rachael had to help me to the bathroom and back that I decided to go to the doctor.   

       Libby didn’t take any of this well.   My job is to be invincible and predictable.  Libby doesn’t remember me ever being really sick or of going to the doctor for myself.   She has been with me over the years for yearly check ups, but mostly she doesn’t remember.   Having the doctor come in and move my knee around while I made a little noise about the pain upset her.   I was wheeled into the XRay machine which did not go over well. When the nurse  came in with  the crutches and brace Libby was NOT happy.   Mom doesn’t get sick or hurt.   “Okay?”   “Mom, okay?”   Over and over again today.  I have tried to be her crutch for so long.  That’s what parents do.  

     I have always feared getting hurt and not being able to take care of Libby.  It is a real fear.   I am super careful and try to take very good care of my self.   I try.    I feel defeated over falling and hurting myself.   Seeing how much anxiety this has given her makes my heart hurt.  

     I run because it is the only thing I do that is just for me.  It is my release and my therapy.   It’s where I can release all my worry and anxiety.   It’s how I allow myself to push physically.  After so many years of  not taking care of myself: eating junk, not working out, and other negative behaviors,  I have landed at this place that has fosters this one positive outlet.  I worry so much about Libby and taking care of her that I fear the loss of this ability.    

       This last week I turned 47 wearing a knee brace and using crutches.   Thank goodness I have a Rachael who gets my over achieving personality.   Who gets the fears of not being able to take care of... she gets it.   I am grateful.  

       I have a group of people who I am priveledged to work with who have been so amazing helping and trying to help me do what needs to be done.   I am grateful.  

       I will not live in fear.   I will finish.   I will use the crutches to be the crutch for Libby.   I will.  

      

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.