Marriage & Terminal Illness | Walking Through The Valley

Archive for Marriage & Terminal Illness

Speak Now, Or Forever Hold It In (What ALS Takes Away)

By sglidden · (4)

When I met Scott, there were two things I noticed about him. Well besides the fact that he was insanely gorgeous…

holding Amber after she was born

One, he has the most beautiful eyes. Sometimes they are blue, and sometimes they are green. Either color they are on any given day, I love them. .

And the other, he has this voice, this deep voice that I could always hear above any crowd. His voice is one of those unique voices that you can’t miss once you hear it. That deep voice made the words “I love you” so beautiful the first time he said them to me, and every time after that. I still remember that. We were dating for three weeks when he said it. I was thinking um, we’ve only been dating three weeks, but man oh man, I love you too! I think I fell in love with him the minute I saw him. Really, love at first sight does exist.

Fall 1994. Up North, our favorite place to be (and where we now live)

When we found out Scott had ALS, they told us someday, he would most likely be unable to speak. They encouraged us to “bank” his voice so that we could always remember it. It sounds so practical and sweet, doesn’t it? But we couldn’t do it.

We were so devastated by his diagnosis and thoughts of everything we were faced losing. We tried to have him say things so we could record it, but it always ended up with us in tears. I wish we could have got through it. Because it turns out, they were right.

That someday is getting closer. He still can speak but his voice is weak and is words are slurred. Gone is that big booming voice I used to love. Now I often have to have him repeat what he said because I can’t understand him. And it takes so much effort for him to talk that he often just chooses to be quiet. He told me there’s a lot to be said for that as well. I wouldn’t know, being quiet isn’t my gift.

Wedding day. Guess he was excited! I’m sure he was yelling something too!

We have a few VHS tapes and some video here and there where Scott is talking. I can’t even watch them now, it hurts too much. I don’t know if someday I will.

I know that words of love can be spoken in other ways, and we have that figured out. But I will always, always long to hear those words from his mouth. And you would too, if you had to face that someone you love would never speak them again.

I do know that any day, no matter what. I will never ever forget what his voice sounds like. Because some things just become so much a part of you, they can never be taken away. And the sound of his voice is one of those things, even if that day comes that I never hear it again.

Linked to :

Thoughtful Thursday

Tell His Story

Thought Provoking Thursday

Imperfect Prose

(4)

Learning To Be Still

By sglidden · (26)

“I had decided, come what may, I would not bankrupt my family chasing a cure. I would not clamor to be part of a clinical trial, only to receive a placebo. I would not doctor-hunt or go Google crazy, searching for someone to give me false hope.” Susann Spencer-Wendel , Until I Say Goodbye

Unlike Susan, we resolved to do whatever it took to find a way to slow down this disease. I have spent almost 3 years making myself crazy for a cure.

I have always been determined (stubborn Scott would say), and found if I worked hard enough, learned enough, persevered and pushed, I’d eventually get what I wanted. I could never live with myself if I didn’t know I did everything, everything, I could to save my husband.

I have chased home remedies, naturopaths, clinical trials, vitamins, supplements, and then repeated that all over again a couple of times. I’ve read books, Googled, emailed, Facebooked and Twittered. I’ve prayed and begged and bartered with God.

Yet ALS rages on. One day when he hopped off the scale another 5 pounds lighter, I took a seat at our kitchen table and cried. “Honey”, he said “You aren’t going to be able to save me. You need to stop killing yourself trying”.

I knew he was right, but I couldn’t fathom just sitting back and letting this win. But after 3 years, I realize I have no choice. It’s time to accept the truth. In 80 years there has not been a cure or a remedy for this disease, and Stephanie Glidden isn’t going to find one.

We had a clinic appointment in January and Scott made decisions I didn’t like. He refused tests and equipment, and finally he refused to prolong his breathing by getting a ventilator. I went slightly ballistic, even though I knew this was his decision all along. I wanted the doctor to talk him into it, to make him take the breathing test, to talk some sense into this man. I was loud and obnoxious.

And I was ignored.

It’s his right, they tell me, to do this his own way. But his way isn’t my way, and I don’t like that one bit. I didn’t talk to him the whole 2 hour ride home and when we got home, I went in the bathroom and cried. I was angry and mad and hurt and sad. But I didn’t change anything with my rant. Scott didn’t waver in his decisions and gave me my space to work all this out in my own head. Like many things in this journey, I thought that getting here, to this final mile, would be a lot easier because I would be ready. I am learning I will never, ever be ready for what this disease does. Ever.

Hospice comes in a few times a week now, and while they listen to me and my ideas, they ultimately turn to Scott and ask him what he wants. If he says no, even to a band aid, it’s no. They too, won’t reason or bargain with him on anything. No is no.

So I find myself here, trying to quietly support him like I said I would, and at the same time quiet the scream in my heart that wants to keep trying, keep fighting, and look for that one more thing that could work.

Being still is one of the hardest things I have ever had to do. But slowly, I am learning there is a lot of peace on this side of the fence as well. I just haven’t discovered how to fully walk in it yet.

But by His grace, I am getting there.

How have you learned to be still in your life?

Linked up to:

Solo Deo Gloria, Just Write, Unite

and Faithful Homeschool

(26)

Real Romance

By sglidden · (10)

I am a hopeless romantic. I could watch Hope Floats and The Notebook back to back 100 times and I would still cry at the sad parts.

My husband on the other hand, can’t understand why I would cry when I know the ending already. Or why I would even want to watch a movie that makes me cry in the first place.

I have spent many times in my marriage pining that my husband just wasn’t romantic. I would even do things to try to make him “more romantic”. Buy him books, load up some teachings, give lots of hints. He never did turn into the romantic I wanted him to be. He still signed his name on the Hallmark card the same way every holiday “Love, Scott”. No added words, handwritten poems, serenades from the rooftop or surprise second honeymoons ever came through. It has now become a joke in our family that daddy is really the one who is hopeless when it comes to romance.

We will be married 18 years this year.

As we grow older, we reminisce about days gone by, I’ve begun to realize my husband was much more romantic than I ever gave him credit for. His romance though, wasn’t chocolate and flowers and handwritten poems. It was much more than that.

Like the time when we all got the flu except him, and he passed around puke buckets all night and brought all of our blankets to the Laundromat by himself to wash for us while we got better.

And then there was the second baby we had, when my delivery was going so horribly and he knew without me saying it that I didn’t want the c-section they were insisting on. And he stuck up for me when I couldn’t stick up for myself.

Then he delivered me breakfast, in bed, every morning for two weeks after that delivery to get me better.

He always loved how I looked when I was round and pregnant, saying that was when I was the prettiest. And when after our first baby was born, I wouldn’t let him see me with the lights on, he got so mad and told me to never do that again because giving him a baby made him love my body even more.

There was that time when I was just tired and overwhelmed with 3 little kids and I wasn’t going to decorate my yard for fall like I had done every year, and I came home and he had done it all for me, scarecrow, mums the whole deal.

Money was so tight one year but I had fallen in love with this really expensive pottery collection that was all the rage and he clipped a 50% coupon out of the newspaper every week and each payday he would secretly go buy me a piece until I had the collection.

And those times when we would move into a new house and I’d be afraid of the dark and make him walk me to the bathroom and he did it, every time without ever complaining about it.

Then there was everyday where he went to work, and he worked so hard for so many hours so we could have the things we needed. And when one job wasn’t enough, he’d work two.

He helped me clean up from dinner every night when the kids were little because he knew although I was a stay at home that I was working a 12 hour day too.

Yes, I got the traditional flowers on Valentines day and cards on our anniversary and I always wanted him to do more than that. I wanted the stuff you see in movies and read in books and now I think, if I took the time to write all this stuff down I’d see all that real romance that was in front of me, faithfully every day for 18 years.

And to think I thought it wasn’t enough and I always wanted more. But now that I see what real romance is, I wouldn’t trade it in for all the fluff anyway.

How about you?

linked up today to Titus Tuesdays

at Time Warp Wife

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False Alarms

By sglidden · (3)

The other morning we heard sirens blaring in our neighborhood. A quick drive by the next day showed a house burnt to the ground with only the chimney left standing. The newspaper said it happened in less than an hour. It’s amazing how fast a normal day can change.

One night last week, I went to bed after getting my feverish boy comfy and my husband all settled. The fire alarms in our house started to go off. Seeing the house down the road burnt to the ground a few hours before had me on edge, even though we quickly discovered this was a false alarm. But no matter what we did, the alarms would not go off.

My husband was trying to instruct me on the different things to do to get the alarms to shut off. After 15 minutes of those things blaring in our ears, the frustration was growing. I needed his help and he couldn’t help me, and they just kept blaring and blaring. I can only imagine in those times how helpless it feels for him to be needed and not be able too. And all it takes is out of control fire alarms blaring to remind us of how helpless we both are in this whole thing.

It seems silly, that something like this can shake me up, but it’s those little things that come out of nowhere that usually do. I’m half of a whole now, and I miss that other half that could figure out anything, that half that protected us and knew what to do and how to fix stuff and make things work again. I’m not good at this.

And once again, I feel helpless and frustrated and angry that his half is broken and I want it to be whole again because I don’t know how to be both of us in these everyday things.

We got the alarms to shut off finally and we all headed back to bed. But in my heart, the alarms were still blaring loudly, it’s warning signaling to me again the things I fear. Loneliness. Helplessness. Brokenness.

When the fire alarms in the house down the road went off, they were real. Thankfully for us, they were false. It’s the ones going off in my heart I’m still trying to figure out.

(3)

Letting Go: The First Event

By sglidden · (8)

My theme this year is “Letting Go”. And a few days into the New Year it’s meaning starts out strong.

For years and years church was a family event. I never realized how blessed I was to have that gift.

But over the past year or so, it’s been harder to go as a family. When my oldest got her license, some days it worked out just to let the kids all go together if Scott wasn’t feeling up to it. I was ok with that.

Once winter hit, the air changes and slippery ground made getting out harder for Scott to handle. And as ALS progresses, I knew it was just a matter of time before he wouldn’t be able to go to church anymore. That time has come and I was ok with that.

We set up to Skype the service but I missed actual church so much. I began thinking of ways I could go, and we came up with a good plan. A family member willing to come sit with him so I could go to the morning service, the kids could go to the second service, and Scott would Skype the service. Talk about a lot of juggling! But I was ok with that.

Or so I thought.

This past Sunday was the first time we tried out our new plan. I got him up in the morning, got myself ready, and headed out the door. At first it felt really great, kind of like a treat because for the past few months, getting all of us ready to head out the door usually left me so exhausted I was ready to take a nap!

This was the first time in about 14 years I have ever, ever been to church alone. It was odd.

During worship, I went to go tell him something when I remembered he wasn’t there.

I hate it when that happens.

That’s when the turmoil in my heart began. A cocktail of happy and sad was being blended up right there in the pew. I found myself holding my breath a few times but I don’t know why. One of our worship songs was about surrendering all to God, but I couldn’t lift my hands. Some just sing the words, but there I sat, living out this surrendering and it would be so much easier to just sing along than it is to live it. But how many times have I already done that?

I made it through the service and then I cried in the car and hit the steering wheel and craved chocolate, but I made it.

When I got home, it was pretty neat to chat about the service together that we attended apart. Technology is a cool thing. Though the hole in our hearts was gaping huge, one moment of locked eyes we both made the decision to press on without talking about it. We will get through this next valley, because there is no other way .

I think of all the times we’ve gone to church over the years it was something I probably grumbled and complained about too many times and thought how much easier it would be if I just had myself to worry about. I thought it would always be a flurry of chaos, clothing, feeding, rushing out the door to make it on time. But now I see, kids grow up, and life happens and getting in my car is no longer a slamming of all the doors, but one door slams shut and it’s single echo is loud and empty.

This letting go thing, is hard. But it’s teaching me that the letting go makes clearer the things worth hanging on to.

What are you letting go of this year?

(8)

Little Moments In A Great Big Life

By sglidden · (20)

I lay in my warm bed with the dark turning to light of the early morning, and snuggle in under the covers a little deeper. I don’t want to wake up fully to my day yet. I feel his arms tighten around me and pull me close and my heart swells with love.

In my dreamy fog, where I am almost awake to reality but still asleep in dreamland I think how nice it feels to be held by him. It’s been so long…..

I wake up with a start and look around the room, searching, seeking. He is there, the plastic mask that covers his face blowing in and out, in and out. His paralyzed arms lay there on top of the blankets, just as I placed them when he went to sleep the night before.

I lay my head back down, bewildered. It felt so real. So real. But it was just a dream.

I must have woken him with my movement, and he moves his feet towards mine. We hold feet now, not hands. It is all we have left. And I know it’s precious and sweet, but this morning, it doesn’t feel like enough.

I can’t shake my dream. My heart grows heavy in my chest and the loneliness sinks in. I miss him Lord, I whisper, and he’s right here next to me. How cruel is that?

And I think:

How many times did he come up behind me in the kitchen and I shrugged him away because I was busy?
How many times did I just rush through a good morning or a good bye, leaving out the hug because I was in a hurry?
How many mornings did I spring out of bed instead of laying there a little longer in his arms because I had a to do list to check off?
How many times did I brush him off, tell him to stop, or move away? How many moments did I miss because I was too busy, too tired, too….whatever?

I suppose we all do it, rushing through our days and missing moments that seem so small but what we learn at some point is the small stuff becomes the big stuff someday. We know it, and we hear it. We want to slow it down, but unless are reminded to often, we let those moments slip by, day after day.

I wish I could take one morning back and get and extra long hug. And that’s the thing, I am realizing. Moments can’t be taken back, they can only be embraced when they come. But the gift is,they keep coming and we always have a chance to do something with the moment right here in front of us.

Today is a new day.

How will you embrace the little big things in your life?
Will the moments of this day become your memories or your regrets?

(20)

A Wedding Anniversary

By sglidden · (11)

It will be 17 years this Sunday. It feels like so long ago, yet it feels like just yesterday too.

I’m proud of all that we’ve accomplished. We’ve fought, climbed, wrestled, and wrangled our way this far without giving up. Even when it seemed giving up would have been way easier than sticking it out.

I was 18 years old when I first met him. A blued eyed hunk of a man who mysteriously showed up in my group of friends one night. He needed a ride home (those were the days!) so I gladly offered to give him one. The way home was when we discovered that he was a whole 5 years older than me. At 18 years old, that was a whole lot of years. This would never work, we both thought. But that short 10 minute ride home was long enough for me to hope that I saw him again very soon.

I can’t really remember how it all happened, but somehow we ended up on a date. It was then I decided I hated his guts. I remember going to work the following Monday telling all the office girls what a capital “J” my date was. I never wanted to see him again. Oh the humor.

I was done, but he kept calling. And calling, and calling. I ignored his calls or telling whoever answered to say I wasn’t home. One day when I came through the door in a rush, the phone ringing and my hands full, I answered. (No caller ID in those days!) It was him. “Don’t hang up” he begged. I agreed to just one more date. After all, he was sooo cute!

He showed up in an ironed shirt, amazing smelling cologne, and ladies, his vehicle was spotless. Did I mention the dozen roses? Oh yeah he did. Then we picked out a kitten at my friends house. How could a girls heart not melt? I was doomed. Head over heels in love.

So our story began. It hasn’t been the fairy tale I dreamed about when I was 8, but it’s been good. Fairy tales leave out the fact that Prince Charming will say something he shouldn’t at the exact wrong time, make you angrier than anyone else can, and leave his toothpaste spit in the sink. But without those things weaved into the fabric of living life together, that fabric would not have the strength it does.

And folks, there is something to be said for growing old together.

Even though my husbands once strong body is being wasting away, his bones protrude where muscle once bulged, his strong hands can no longer hold mine, and his rugged arms cannot wrap around me, I still see that manly blue eyed 24 year old hunk when I look at him. I also see a man made wiser by the trials of his life, softer by the tribulations, and sweeter by the moments. Those things make him more handsome than he was 17 years ago. And 3 children and several pounds later, he still tells me I’m beautiful.

As with all holidays, our anniversary included, there is an overwhelming sense of sadness at it’s appearance. Another year down is no longer a cause for celebration, as another year lurches us closer to the end of the time line we’ve been given. There will be no dinner out, no trip to take, no holding hands while we dream about our golden years. In fact, the past 2 years our anniversary has found us crying in each others arms as we mourn all that we have fought so hard to keep from slipping away.

A lot has changed in ways we never planned. But one thing remains the same.

My heart still goes wild with love when I look at him. And no matter how many months or years we have left, I don’t think it will ever be any other way.

Happy anniversary, my love.

This was the danced to this song 17 years ago, and though I can’t bring my heart to listen to it today, I still mean every word of it.

(11)

Can I Handle The Seasons Of My Life?

By sglidden · (7)

There is a song I hear on the radio by Fleetwood Mac that always brings me near tears. It’s called Landslide.

Can I sail through the changing ocean tides?

Can I handle the seasons of my life?

I don’t know

Well, I’ve been afraid of changing

‘Cause I built my life around you

But time makes you bolder

Children get older

I’m getting older too

The day we learned Scott had ALS, we began the two hour drive home in stunned silence. Then we did what we knew best: we went out to eat. As if either one of us could eat anything, but it seemed like the right thing to do. And talking about what just happened in a restaurant seemed safer than doing it in the car because the public setting would save us both from falling apart.

And this song came on in the background.

The next season of my life would be nothing like I had planned. I began to panic as I listened to the words to the song and thought about the change in direction our lives had just taken.

Our kids were beginning to grow up. Things were getting easier for us and we were enjoying the stage of life we were in. No more diapers and sleepless nights (for the most part), our oldest was able to babysit so we had some free time we hadn’t had in years, and we began to dream of retirement and grandbabies. We’d laugh about how clean the house would stay, how little laundry I’d have to do, and how hard it would be to learn to cook for two again. It was about 10 years off, our grand plans.

Suddenly 10 years ahead didn’t look so fun to get to any longer. Sure I’d have less cleaning, less laundry, and less cooking to do. But I wouldn’t like the reasons why anymore.

Scott and I had a whirlwind relationship from the day we met. We were crazy in love and 4 months into it, I was expecting. We married the following year and proceeded to have 2 more children that were unplanned but almost 2.5 years apart to the day. While we loved those little babies with all our hearts, we never got to be just us for very long. We were excited for a time when it would be just the two of us, and decided we weren’t going to be depressed empty nesters. No way. We were going to have a blast.

The other night our 3 kiddos were off in different directions and it was just us. Scott was pretty sleepy so he was dozing on the couch. And I sat in my chair and my thoughts began to wander……

Well, I’ve been afraid of changin’
‘Cause I built my life around you

Some days, I feel so strong in this battle. And some days I feel so, so weak.

Linked up to:

(7)

A Table For Two

By sglidden · (33)

I try to get Scott out of the house a few times a week because I think it’s good for him. But our trips out of the house are getting harder to pull off and more difficult to plan. It’s one of those things that makes me really see how bad his health has become.

Not only are the trips out hard on him, they take a toll on me, too. Just getting out the door is a feat in itself, with myself to get ready and then a whole other person. But I think it’s important enough to do so I keep on trying.

We brought Eric fishing to a beautiful spot a few weeks ago. The weather was perfect and he even caught a little trout! It was nice to be able to sit with Scott and just talk with him.

His speech is really getting difficult and wears him out to talk. Many times I cannot understand him and have to have him repeat himself, which is so frustrating for him. He has to save his talking for times when he needs something, so that fun idle chatter I am used to is gone. So many times I feel like the only time we talk anymore is when he needs something. Rare are the days when for a few moments, I can just be Scott’s wife and he can be my husband. {and yes, I forgot my camera or I’d have a picture to share!}

Scott always thanks me for pushing him to get out of the house even though I know it’s hard on him and tires him out. This day was no different. I told him what a nice time I had with him. And he said sadly “It would have been perfect if I could have brought you out to dinner too”.

Going out to eat has been one of our favorite things to do since we started dating. It is now a thing of the past, as Scott can barely eat a few bites of food if any at all. And you know, I can’t remember the last time we went out to eat? You would think I would remember these things, our lasts, and burn them into my memory forever. I guess I didn’t know the last time we did it was our last time.

What I wouldn’t give for a date night with my husband again.

Watching him shave in the bathroom and smelling his Kenneth Cole cologne as I curled my hair. Sitting across from him at the table and laughing about something silly the kids did. Ordering a nice meal and watching him take his first bite to see if he liked it, and usually putting what I couldn’t finish on his plate too. I took so much for granted. I never, ever thought so much would be taken from us.

We let our hearts dwell here for a moment as the memories flood our minds. We both look at each other and smile. He doesn’t say it, because it will draw those tears up to the surface, but our hearts are tied so tightly together many times there need be no words spoken to know what is being said. We have had such a wonderful life.

I sure hope in heaven, God sets a table for two and let’s us enjoy a meal together again.

Do you think that could happen?

photo credit

Linked up to:

On Your Heart Tuesdays

and Solo De Gloria

(33)

Walking Through The Valley Of A Marriage Crisis (A She Said Yes Story)

By sglidden · (2)

photo credit

This isn’t the first valley we have walked in. Four years ago, we walked the valley of a marriage crisis that almost tore us apart.

Today I am sharing our story at Surpised By Life for the the “She Said Yes” series.

I was in my bubble of being a happy homemaker, church going, loving wife. I kept a clean home, homeschooled my children, had a healthy dinner on the table every night, and tried to always look good for my man when he came home. That world I thought we all lived in came crashing down pretty quickly. Read the rest of the story here.

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