Tag: ALS

No Games

Published on by Glenna S. Edwards1 Comment

Each year I spend a fair amount of time listening to friends tell me about their heartbreak and the guys in their lives who are not fully committed to participating in a relationship.

Frequently the behavior described leads me to respond with “he may be a coward.”  A coward is timid or uncomfortable doing unpleasant things.  And guess what?  A relationship can be filled with unpleasantness.

Relationships require work to be successful.

In the spirit of love for my husband, I’d like to brag on him for a moment.   To follow are ways I knew when we dated that he is not a coward:

1.  He didn’t lose my phone number.  He called when he said he would.

2.  He didn’t flinch when a different girl flirted with him.  He knew what he wanted and ignored her.  He wasn’t waiting for someone better.  He did not play games that left me guessing.

3.  He wrote a letter to me every day I was away on a summer mission trip the first year we met.  I treasure those love letters.

4.  When I made a mistake mistakes he said, “Let’s talk about it.”  I eventually agreed.

5.  When he made a mistake mistakes I said, “Let’s talk about it.”  He eventually agreed.

Sidebar: We are both stubborn, but we knew even at a young age that we must set time aside to deal with our mistakes.  With angry lips quivering we still found a way to create safe space for discussion.

6.  He was able to apologize and to receive apologies.

7.  He loves Jesus.  We do church together.  There was zero doubt from the beginning that faith would remain an integral part of our lives.  Someone gave us a framed poem called “Marriage Takes Three”.  I agree with that poem more and more year after year.

Opposites do attract.  We are living proof.  It is not uncommon for each of us to argue our perspective on a topic.  Most of the time when we stop to listen we realize we are saying similar things.  Not one year of marriage has been easy, but I am thankful that I have never questioned his love or integrity.

8.  Humor helps.  Yesterday he shared that his arm muscles are starting to fail due to ALS.  He made a gesture with his arms that led me to call him my T-Rex.  Somehow laughter joined the conversation.  Today he sent me a cute T-Rex cartoon text.

We are finding ways to lighten a heavy load.

Ephesians 4:2-3  With all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace.

How do you maintain unity through the ups and downs of a relationship?

Friends on the Trail

Published on by Glenna S. Edwards1 Comment
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Steam Team friends 2016 near Rapidan River

I’ve noticed that loss and loneliness often go hand in hand.

To stay the course of cleaning out our home of 20 years before putting the house on the market, I’ve said no to several fun get togethers and adventures this summer.  Spending hours alone in a dusty basement is a recipe for lonely.  Ugh.

I remember 10 years ago feeling lonely as I grieved the deaths of my mom and sister-in-law.  No matter what interactions I shared with people the fog of loss did not lift for many months.  The grieving dominated while I went through the motions of life as best I could.

This loss is different.  I am thankful to not have the intense brain fog, but my mind is noticeably strained with long to do lists and some sadness nonetheless.

While sorting items from our home, I relive memories of friends and family over the years.  Cards, pictures, movie tickets, toys, and journals have resurfaced.

I laugh out loud, snap a picture to capture certain memories before tossing items, and give thanks for the experiences.  I don’t need the fading construction paper from my children’s preschool masterpieces, but I do want a remaining image of their artwork in case I choose to revisit digital pictures that do not require space or dusting in our next home.

I feel lucky for friends in my life whether they are here for a season, reason, or ongoing.  I’ve had time to think about friends and how much they’ve meant to me along life’s trail.  I am reminded to text or email girlfriends I haven’t spoken with in a while.  And close friends who know what’s going on have helped or offered to help in this process.

It’s like I’m in adult time out.

I have long talks with God on my worn path to Goodwill.

Memories made with friends along the trail of life improve my energy.  Oh, and ibuprofen could almost be called a friend at this point too!  Ouch, my muscles hurt.

Sometimes I think when this is over I will spend a week in bed, but I really won’t do that when the time arrives.  I will call a friend and choose an adventure.

friendship proverbs 27 9

When Was The Last Time

Published on by Glenna S. Edwards1 Comment
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2009 Shaw Farm

When was the last time he took my hand and we took a walk together?  When was the last time he could stand up from the couch without thinking about how to stand?  How many years ago was the last time he could golf–his all-time favorite activity?  When was the last time our home did not involve daily groans and pain?

As a mother, I vowed to cherish everything about our sons:  every flutter as they swam in the womb, first grins, first toys, first words.  My heart skipped beats when their little hands kept reaching for mine well into elementary school years.  I knew their childhood would end.  I treasured their soft skin and cuddles.  I would not squander those moments.  And while storing up sweet memories I welcomed the fact that one day our boys would move on to a greater destiny beyond their mom’s heart.

What I did miss was treasuring simple moments with my husband.  Yes, I appreciated him.  Yes, we tried to spend time together.  Yes, we overcame the fact that opposites really do attract and chose to draw closer to God, our translator, to communicate.  Yes, we did not give up on our marriage or each other.  But did I truly cherish him?  I didn’t think he was leaving.  And he hasn’t left, but sometimes it seems like he isn’t all here either.  My mind reaches for precious moments of ease that I forgot to store in my brain.

Grief arrives in many forms.  Sometimes we grieve the loss of a job or relationship.  I’ve endured the pain of people close to me passing away.  You may have too.  And now I endure the pain of watching chronic illness ALS-21 steal expectations we had for our present and future.  Our youngest child is a teenager.  I thought we had more time before hubby and I grew old together.  But symptoms of old slowly moved into our home decades too soon.  We are like the metaphoric frog in the pot of tepid water who didn’t know the heat was about to turn up.  We sat calmly in the pot not noticing that the water began to boil our circumstances.

I spend hours each week clearing “stuff” out of our house.  It feels like we are in a race against the clock to move to a more accessible place.  We had plans to remodel that will never happen while we are here.  I feel the ugly emotion of jealously toward people I haven’t met who will do projects here that I likely will not see.  Tears drizzle my checks occasionally over leaving our home of 20 years too soon.  What really got me down deep was when our oldest son was home on leave from the Air Force.  A couple nights he didn’t want to go see friends.  He shared that he just wanted to enjoy the walls of our home because he knew he might not ever again get to come home to this address.

On the flip side of the moving coin, I celebrate the thought of being in a home where my husband doesn’t have to crawl upstairs at night.  Are we old enough to require a no steps living arrangement?  Apparently yes.  This thought process requires me to clear clutter faster.  Time is not waiting for me.  I’ve quit looking at other homes online because I need to focus on the task of leaving this home first.  I trust God will provide the right place for us at the right time.

Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  Matthew 6:34

I often tell myself that our situation could be worse, that there are worse things that people deal with.  These thoughts push me along to be grateful for the good things in our lives that we do have, or things that are better because we’ve had to adapt.  For example, I’m not sure my husband has ever verbally appreciated me more than he does now.  His kind words mean a lot to me.  We are also more forgiving and appreciative these days.  It seems like we have reached a calm place where we are slow to anger and less judgmental.  I thank God for the side benefits of sticking together and pushing through tough times as a team.

Are you grieving a loss or expectation of any size?  It takes time to grapple with it.  If you have tips or favorite verses about grieving that you would like to share, please comment.  I’d love to hear from you.

 

 

Fat You Can Come Back From

Published on by Glenna S. Edwards2 Comments

We all open mouth and insert foot sometimes.  To follow is an example.  It was an early morning coffee meeting and the person across the table from me talked about running into a mutual friend from our past who is obese.  They paused while looking at me with body language that said oops, waved their hand dismissively in my direction, and then said out loud, “Not like fat you can come back from.  Worse than that.”

Oh.  I see.

Now…I am strong.  I feel healthy except for my weight and feel comfortable in my own skin.  In fact, I have some great fat clothes these days.  I can pull it together so to speak, toss the hair, and be in public just fine.  I mean, I’m only 3 sizes bigger than my favorite size.  And 3 is a small number, right?!  I rationalize.

I’ve thought about their phrase for a few months.  They back pedaled a bit to offer excuses for my stressful life and then gave up trying to course correct their tongue.  I politely shuffled them on to the next meeting topic.

One of my truths is that I have a bad relationship with 20 pounds.  We are on again and off again.  Sometimes I can gain and lose the same 20 pounds twice in a year!  And it’s not just 20 pounds that is the issue.  If I could successfully keep off the first 20, then there’s practically a whole kindergartener that I need to lose additionally to reach what charts say I should weigh.

I am super blessed that my husband has never in 26 years of knowing me ever said even one negative thing about my body.  This is on the list of the things I love about him.  Meanwhile, his body is failing him/us with the diagnosis of ALS-21.  Our reality is that my body needs to step it up to be healthier in the caregiver role that we/I face.

Reality in mind, I’m officially breaking up with those pesky 20 pounds again with the goal to, like Taylor Swift says, “never ever ever get back together”.  I’m back at the gym and using the Lose It! app to track calories.

Here are a couple people on Instagram who inspire me in the journey of weight loss:

FatGirlFedUp – I marvel every time Lexi posts side by side pictures of her wedding day at 485 pounds vs. present day after losing over 300 pounds.  She shares her story and food/exercise tips.

DiscoveringDanny – Danny is Lexi’s husband and workout partner.  Their journey is worth following.  I adore a sweet love story.

1 Corinthians 6:19  Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own.

I am reading Made to Crave by Lysa Terkeurst.  I’ve read it before, but this time I am answering the questions at the end of each chapter and being honest with myself.

I’ll let you know how the break up goes!  If you want to connect on the Lose It! app, I am GSE or glennasue34@yahoo.com.

God bless you,

Glenna

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