Gum on my shoe

The last few weeks have been busy, draining, and yet good. Coming back from Spring Break at full speed is a race to the finish.  Libby, Rachael and I have our schedules and we are rocking and rolling through the days. This time of year We generally hit our stride.  

This week I felt an unexpected guest joining me- sadness. Parenting a Special Needs Adult is beautiful  and hard. I had a blessing filled opportunity to share the timeline and progression of Liberty’s illness on Monday.  It was a bright light reminder of how far we’ve come and how much we’ve lost. Then we had our bi-annual visit with her disability insurance nurse. I was able to say several things out loud that I had only whispered in my prayers regarding the progression of Liberty’s illnesses. On Friday, Good Friday, Liberty got a new feeding tube. 

Liberty is resilient and her emotions are generally ambiguous unless she is very happy or very sad.  It may take several minutes for her feelings to reach her face or body.  She was only physically a part of the feeding tube replacement. The other appointments I was her representative- her voice. I only tell you that because I think I absorb the emotions she isn’t able to process or express. 

I don’t have a place any of these emotions: mine or hers.  So it was Wednesday before I realized that my emotional feet felt like they were stuck to the floor. Like I had to walked  through gum on a hot day. 

Sadness tends to sneak in and take place without invitation. It is sticky and gross.  The more you mess with it, the stickier it gets.  When it’s hot that gum is icky and when it’s cold it is a rock bruising you with every step.  To me, that is sadness.

Please take this entry as my own observation and growth.   I am not whining as I know I am blessed. Beyond blessed. 

It was during my Small Group meeting with church friends on Wednesday that I actually saw the metaphorical gum on my shoe.  Sadness had attached itself to me and I hadn’t dealt with it.   I’m not good at this.  Not good to say, “I’m sad.” And then say, “this is why”.  I don’t do that, but I need to.  I think my constant drive to be positive is suffocating  my natural response to recognize when I’m sad and work through it.  Then clean that damn gum off of my shoe and move forward.  https://images.app.goo.gl/2H2g4uvG4reJcZLVA

sticky shoe

So here it is: I have a sadness that I will not allow to extinguish my joy.   I have lost the Liberty we started with.  I miss her. I miss hearing her voice singing. And climbing. And being adventurous Liberty. Parts of her are still in there, but many of her attributes have been destroyed by her encephalitis. The care for her now is relentless and for that I am grateful. I love this Liberty and will continue to do all for her.   She gives me joy everyday and that is not diminished when I say I’m sad because sometimes we get gum stuck on our shoes.  

Also need to acknowledge the difference between sadness and depression.   Here is a link to help explain: Medical News.

I know there is a wealth of support around me. 

I know I’m not alone. We are all walking through minefields of gum.  

I know my God will help me get that gum off of my shoe. 

I know my meditation and yoga practice is helping, since I cannot out run the sadness. 

I know that even on the darkest of days, Easter is always coming. 

I just have to acknowledge it’s there so I don’t track into too many other places.  

-**Grateful to be able to work through it and let that sadness move on through.  All is well on this blessed Easter Day.   

Be blessed and be well,

You are loved. 

Feed

We have made it through another busy and somewhat hectic October. I love fall and the changes it brings all around me, but the grueling pace we set at the beginning of a school year often becomes a prize fight during this month.  The sheer amount of wonderful opportunities we’ve had to be with loved ones, work towards our goals,  serve our community, and kick the booty of our never ending to-do lists is astounding.   And we did it. November welcomed us in a surprising way. 

For the last year Liberty has been steadily losing weight. We have altered her diet, moved to soft foods, increased the thickness and calories of her liquids, and chosen to pulverize every meal she gets.  The amount of calories we can get into her body is not enough.   Her spasticity and the dystonia storms cause her to burn through whatever calories we can get in.  

This  battle is waged against a jaw and throat that has been attacked by Parkinson’s.   I call it her Parkinson’s swallow; doctors call it dysphagia.  Libby can’t tell how much she’s chewed what’s been placed in her mouth.  She will chew air like a boss, and then swallow another piece with any chewing- luckily her food is all mush.  Each meal wears her out.  Then add to that her lack of desire to eat at all and you get a battle for every meal.  Every single meal is a fight.  It’s ugly. I’m not the mom I’m supposed to be during meals.    

Several of our docs have brought up the feeding tube over the past years, and I’ve discounted getting this invasive procedure as she was still eating.  Since August Libby is down around 15 pounds.   15 pounds that she didn’t have to lose.  She’s under 100.  To me, this is emergency level.   

I got her an appointment with the local doc, told him what we believe she needs and he did order the swallow study That was completed two weeks ago. Since then we’ve played some Olympic level phone tag with several doctors and got to meet a pain management doctor who is lovely. 

Thursday I received a confirmation call for Libby to have the gastric tube placed Friday, 11/2, at 6am.  We were there. Did all the stuff.  They took her back. Less than an hour later a new doc came back with mixed news.  

Libby’s bowels were inflamed and her liver was in the way.  Partially because of her somewhat contorted body due to dystonia.  Her back is shifted so then is her torso. The doctor suggested that we reschedule and do the same placement procedure with a CAT scan for guidance.  That means we lost a day as did our family members who were there on such short notice.   I would rather be safe, but was still saddened by the loss of opportunity to get the nutrients into her body.   I’m telling myself that this was a training run.  Just a little practice.  

So, we’ll schedule again.    Praying it will be soon.   

The irony here is that we feed people.  Lots of people.   It’s natural for me.  There’s a reason that I serve through Snack Shak, High Plains Food Bank, Snack Pak and Key Club’s efforts to honor the campus; I believe in the beauty that happens when food is shared.   Yes, while I’m feeding so many others, my Liberty is diminishing everyday.   It’s a sad irony.     Praying we can get into an operating space soon.   

Much love to all.

Ileana