Walking Through The Valley

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 :

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(4)

Read This The Next Time You’d Rather Stay Home Instead Of Going To Church

By sglidden · (3)

I wonder how many times I’ve grumbled about having to go to church.

Seriously.

There were many times over the years when I just didn’t want to go. A day of rest? I’ll show you what that looks like, I would think as I snuggled back under the warm covers. Most times I wanted to go. But let’s face it, (and I’m sure I’m not alone!) it takes a lot of gumption to do the hustle and bustle it took to get out the door and get there on time. Especially when the kids were little.

{source} p.s: Don’t you just love this image?

Scott stopped going to church when the cold weather hit last Fall. Temperature changes are tough on him, and the slippery ground was just too scary to venture out on. His speech was becoming more difficult and it was harder and harder for him to handle a crowd. We began Skyping the services and staying home. It felt like a treat. At first.

After a few weeks of this, I would wake up on Sunday and ache to go to church. I missed it, the fellowship, the singing. Watching it on the computer just isn’t the same. I even began to miss the hustle and bustle I used to dread on Sunday mornings. It was what we did. And now, we weren’t doing it anymore.

I’d try to figure out a way to make it happen, and a few times I did. But because someone needed to be home with Scott, I found myself there, alone. After 15 years of church being a family affair, going alone was just….hard. Too hard.

The day before Amber’s wedding, I wanted our family to go to church, all together one last time before she was married. Scott said he thought he could do it. Then the hospital stay happened, and we couldn’t go.

So this past weekend, he said he wanted to try to go. I was so excited. All week I kept thinking about how nice it was going to be that we were going to church, all together.

Saturday was the day of preparation. I was going to give him his shower and shave so we could make getting out the door easier.

But of course, ALS always has a different plan for us. Scott’s neck was so weak, he was having a hard sitting without support. I had all I could do to brush his teeth for him. He was exhausted and in pain, so I told him “let’s forget about the shower today”. I said it in my happy voice, but I’ll admit, I was disappointed. There would be no church together this week.

I dropped my kiddos off at the door on Sunday morning and drove back home.

And I wondered, how many times did I grumble and complain on a Sunday morning, when now, I’d give anything for those mornings of all of us getting ready and rushing out the door to make it there on time?

You truly don’t know what you got, until it’s gone.

Maybe the next time you want to hunker down under the covers and miss a day, you’ll remember this. And you’ll go, thankful that you can.

Be blessed.

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When Life Changes Fast, And When Your Heart Needs To Catch Up

By sglidden · (9)

Whew was May a month of lots of changes for our family!

For starters, the month started out wedding planning, and ended in Scott spending 3 days in ICU and a marriage.

Scott’s feeding tube had been giving us some problems, and after several days of difficulty getting anything through his tube, he became dehydrated. He woke up very, very sick on a Tuesday and it was decided to bring him to the ER. Upon arrival to the hospital, his heart rate was dangerously high and he was running a fever. After hours of trying to get it to go back to normal and get his fever down, it was decided that he would be admitted .

It was an awful three days.

He was hooked up to so many machines and wires and was very, very ill. And I was very, very scared. With a terminal illness, you always have in the back of your mind, is this the end? Is this it?

All this, 4 days before the wedding. Yikes.

After all kinds of testing and medicines and picking and probing, they determined his heart rate is so elevated due to his poor respiratory function along with dehydration and anxiety. The off and on fever was a mystery they never resolved.

Scott decided from the beginning not to go a ventilator to help him breathe as his lungs deteriorate from ALS. He is at the point of needing one, but getting one to him, prolongs the inevitable. I support his decision, but only in my head. In my heart, I want him to get the vent. I promised him I would support his decisions through this, no matter how hard they are. And I will, even when they break my heart.

Then onto the marriage of our oldest daughter. After a week of rain, we had a day of perfect temperatures and beautiful sunshine. With lots and lots of help from our church and friends, the wedding was smooth sailing. My daughter was stunningly beautiful. Scott walked her down the aisle proudly. And I felt like I was handling it all pretty good, until she drove away in the “just married” car.

The tears started and wouldn’t stop. I felt so incredibly sad and heartbroken. The events of Scott’s hospital stay, bringing him home weaker and needing more care, and my daughters empty room sent me in to a bit of a tailspin.

I cried a lot last week. I felt literally, like my heart was breaking. Grief is an awful feeling, it’s so heavy and overpowering.

Scott prayed for me continually, and let me lay my head on his lap and cry my heart out. The fact that he couldn’t hug me only made me cry harder. I don’t cry very often, and it seems like a years worth of sorrow was spilling out.

I was beginning to fear that this was it for me, the place in my life where I completely fall apart. But God is good, and my husband is so sweet to be there for me, pray for me and encourage me. With all he has to battle in a day, he continues to amaze me with his love and care for me still.

So here we are on Monday, the start of a new week, and a new month. I’ve adjusted a little better to the amount of care Scott needs now, to the empty room, to my daughter coming to visit but not stay. I can’t say I’m excited about all these changes, but I am adjusted. And each day becomes a little more manageable.

And I’ve missed writing and creating. I guess here I am to say “I’m back!” A little wobbly , a little vulnerable, a little off balance, but I’m back. And I hope you’ve hung in there on my journey and are still here with me.

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Candles And Trials And Fires And Flame

By sglidden · (12)

“When you walk through the fire, you will not be burned;

the flames will not set you ablaze.” Isaiah 43:2

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I love candles. I usually have one going all the time in my house. The other day as I lit my candle I thought “A candle only lets off light when it is being consumed.”

I have a son who loves facts and learning how things work, so it’s become a habit of mine to figure out how things work too so I can share it with him. A candle is pretty neat.

The wick is soft and pliable and absorbent. In order for it to burn properly, it has to be able to be molded and absorb the wax. Once lit, the wax pushes upward into the wick. The wax actually protects the wick from burning up completely because it cools it as it burns.

How like us. We must be soft and pliable for God, being able to be shaped and molded into the things He wants us to become. We must absorb his love and grace and mercy and goodness into our own selves so that when we become consumed by trials we can shine the light of His love. And like the wick that is letting off light, being consumed, the love of God protects us from burning up because like the wax to a candle, He pours into us to keep us burning brightly.

When we live our life dipped in God’s love, the trials will still come. But we can rest in the assurance that we will always be protected from being consumed. And when we let His love and truth surround us, when the flame burns as we know it will, we can be sure it is letting off His light.

Some candles burn longer than others, just like some trials. But no matter the size, they all work the same way. No matter the trial, how big or small, God is still working the same way. We must remember that.

A candle that just sits there does little good. It can be tempting to get a pretty candle just to display for show. But candles aren’t meant for show, They are meant to be used. And only when they are lit, can they shine their light.

And I think, isn’t that so with us.

linked up to:

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A Few Things That Are Happening

By sglidden · (5)

I’m suffering from a bit of writers block. And I just went through my whole drafts folder and didn’t like anything in it. So I figure I’ll just share a little bit of what’s going on in our neck of the woods these days, in case you’re interested. All of these, I assume, are contributing to my writers block.

1. I have a daughter getting married soon. Did I tell you that?

May 27th is the date.

It’s an exciting, busy time and this momma bird is having a bit of a hard time with one of her babies leaving the nest. This month involves final plans, bridal showers, and spending as much time with my girl as possible. I think I’ll go sleep in her bed that last few nights so I can be as close to her as possible. *sniff, sniff*

2. Scott has lost another whopping 10 pounds.

This leaves me speechless. I feel like it’s my fault, even though I know it isn’t. Muscle wasting causes weight loss, I know this. But I’m in charge of his food. He’s been at a stable weight for months now, it’s hard to see that sudden loss. Sad smile

3. My middle daughter is in a play

It’s opening this week and that means a flurry of activity is going on. I cant wait to see her in this show. Her costume is awesome, and well, so is she. At least I think so!

4. My youngest son is obsessed with Paracord.

He’s making bracelets to sell and is convinced he is going to make a fortune. I think something is up with his hormones too, like puberty. Cause he’s had mood swings the size of Texas. I didn’t think I’d have to do this with a boy.

5. I am working on getting my craft business going.

I’ve been doing a lot of sewing and have had tons of fun. I’ll be listing stuff on Ebay and sharing on my Facebook page and eventually through my web page. It is called The Nested Needle .Will you join in the fun and like my facebook page? I am hoping that this little venture will bring in enough money on the side to supplement my income so I can be home more.

6. May Is ALS Awareness Month

They say ALS isn’t incurable, it’s underfunded. Raising awareness hopefully changes that. Each day on my personal Facebook page, I’m doing my part by sharing how ALS affects our lives. I think people are learning a lot they didn’t know about this awful disease. I hope it helps raise awareness so that we can someday find a cure . I hope when they find a cure, it’s not too late.

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So just a few random happenings in the Glidden household. What’s going on in yours?

(5)

Brave, Not So Much: A Five Minute Friday Post

By sglidden · (6)

It’s Five Minute Friday. Today’s word is Brave.

Go.

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“I don’t know how you do it…..”

“I couldn’t do it…..”

“You are such a strong person…..”

I hear this all the time when I tell people I am my husband’s full time caregiver. It’s funny how others think I’m so courageous, so brave, to walk this journey of terminal illness.

The thing is, I’m not brave or courageous at all. I didn’t choose this battle. If I had any choice at all, I never would have felt I was strong enough to go through this.

My husband just said to me yesterday “I never thought that my wife would have to help me to the bathroom someday.” It’s weird, being in the prime of our lives yet doing the things that people in their 80’s do when I’m not even 40 years old yet myself.

To be brave is to “endure or face (unpleasant conditions or behavior) without showing fear”. Truth is, I’m afraid. Very afraid. Seeing my husband become paralyzed and struggle to breathe is scary. And I’m scared.

To be brave is to “ready to face and endure danger or pain”. I don’t feel ready or prepared for this. I feel ill equipped, inadequate, and ill prepared.

What you see is a girl that has been thrown into a battle she has no choice but to fight.

Not bravery.

Not courage.

Resilience maybe. Persistence maybe.

But no matter how afraid I am, no matter how scary it is, no matter how many times I wake up at night in a sweat wishing this was all a bad dream, this is where I am supposed to be. Here, and nowhere else.

And heart pounding, fear racing, and anxiety rising, I will fight. Even if it’s destined to be a losing battle on this side of heaven.

****stop

(6)

My Husband Feels Useless, And Other Things That ALS Does To A Man

By sglidden · (14)

I don’t think he’s useless. But he thinks he is.

We had a phone call the other day from someone who hadn’t seen him in a while. The caller asked “So what exactly is wrong with him?”. I don’t know how, or if I even should, answer that question. He’s sitting right there and the caller is on speaker phone, and I can’t bring myself to go over the list of things he can no longer do while he listens along. It’s too cruel.

He tells me all the time he feels useless, and I tell him that’s nonsense. I tell him he needs to focus on the things he can do, not can’t do. But we each silently know that the list of can’t-do is so much longer than the list of can-do’s. And ALS, it takes even the small can-do’s away and he knows it and I know it, but I don’t know how to convince him that he isn’t useless.

I do understand the feeling of uselessness though, because even though I’m not the one slowly being paralyzed, there is so much in my life this has affected. So much that has rendered me useless too. I am a mediocre homeschooler, I barely cook, I can’t help with any ministry, and attending church is becoming a thing of the past with each Sunday I miss. My mothering nerves are short and my exhaustion is high and my patience is low. And no matter what I say, I can’t convince him that he isn’t useless.

And we know that when we are weak, He is strong. We know that when we feel useless is when God can best use us. It’s easy to say those things when you are being used well by God. But when you are truly rendered useless? It’s hard to see life swirl around and continue on and not feel a pain from being on the outside looking in at so much being done and nothing you can do. It’s our season of silence, of quiet, of allowing ourselves to be ministered to, and it’s not easy, this sitting still and letting God. It’s not easy at all.

But if rendering us useless is making us useful, then isn’t that what this Christian life is all about? Isn’t that the songs we sing in church, the words we read about in our Bibles, the things we pray about when we cry out to God to be made more like Christ, to be more like Him? Have you ever lifted your arms and belted out “I Surrender All” and “Take My Life” and all those other tunes that ask Him to make you useless?

Yeah, we have too.

I guess we thought when God was going to answer those prayers to make us useless so we could be used by Him, it would be a whole lot prettier than this. A whole lot more glory filled. A lot less painful and a lot more comfortable. We thought Scott would always be able to lift his hands in praise, to stand in worship and kneel in prayer, to speak more prayers and sing more songs.

Oh, how we thought surrendering all would, somehow,still, be all about us.

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How Facebook And Twitter Make Me A Better Friend

By sglidden · (29)

Five Minute Friday. The word is friend.

Go.

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I chuckle a bit when I hear people say how they dislike Facebook, or Twitter (yet they are on both, I don’t understand that?), because I love both social media outlets. Oh sure, I become frustrated sometimes with the things that are posted and there are times I feel the need to pull away and even delete my accounts. But for the most part, I love them both and use them daily.

Why?

You see, I am an introvert by nature.

And social media is perfect for me.

If you know anything about introverts, you know that fellowship and conversation, while enjoyable, are draining on this personality type.

You see, I hate talking on the phone.

I don’t like big groups and am not much into crowds.

I’m exhausted from constantly being needed as a caregiver, mom, nurse and so on.

Sending a tweet, a status, a text is perfect for a girl like me. Perfect.

I don’t have it in me to be much of a friend these days. Or much of a friend that requires spilly heart conversations on the phone and having a girls night out kind of thing. I still want to be a friend, and I treasure the friends in my life dearly. I just don’t know how to always balance that with the other important things I need to refresh my spirit. Like stare out the window or sit on my deck in solitude, get lost in good book or create something in my craft room. You know, those kinds of things done in quiet.

But I still crave time in the outside world. Just in smaller, measured doses.

Social media lets me have that time and when I’m done, I’m done.

It’s so much easier to say goodbye through a screen than it is in person, don’t you agree? I can chat with my friends at various times in a day, send a message to them just to say “Hi, I’m thinking of you” and yes, even plan the occasional coffee date easily when I do have the opportunity to get out of the house. I can let them know I care and go back to window staring fairly easily. Both refresh my soul.

Some say all this screen time ruins relationships, and perhaps in cases it does. But for me, it has made me a much better friend.

What do you think?

{oh and if you want to be my Facebook or Twitter buddy that I can say hi to every now and then, I’d love to have you You can find me here on Facebook, or here on Twitter. Introverts, unite!}

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Bridges, Troubled Waters, And Remember This When The Storm Rages On

By sglidden · (16)

I live in an area where many of the prettiest covered bridges are located. The bridges are a main tourist attraction, with pictures snapping of people happily posing on the historic landmarks. These bridges flow over water that sometimes is peaceful and calm, and other times the river swells and rages beneath them. My heart was heavy when I drove over one of them on my way home last night, and I remembered the famous Simon and Garfunkel song.

When you’re weary
Feeling small
When tears are in your eyes
I will dry them all

{source}

I’ve been accused at times of being too positive about this whole terminal illness thing. I’ve been told I’m in denial as well. Perhaps both of those things are true. My walk through this valley ebbs and flows. The terrain changes, and sometimes, it’s not so tough getting by. And sometimes….

Sometimes there are those dark, dark times. Those times when tears are forever at the corner of my eyes ready to pour out, when getting out of bed physically hurts, and when my only thought for the day is when I can climb back in that bed again and forget about it all.

When you’re down and out
When you’re on the street
When evening falls so hard
I will comfort you

I am grieving. I am grieving the loss of a life I once had, the future of a life I don’t know, the loss of a partner, a team mate. The loss of so many things. And it comes on like rushing water. Sometimes, I feel like things aren’t so bad. And other times, the water comes crashing too fast and too hard and the night seems darker than usual.

I’ll take your part
When darkness comes
And pain is all around
Like a bridge over troubled water
I will lay me down

And though I know that no one truly knows how it is to walk in my shoes and understand this journey, that’s ok. I don’t expect anyone to. I now know to be gentle with myself, and others. And to hang on to the hand of Jesus, my bridge over troubled water.

I’m on your side
When times get rough
And friends just can’t be found
Like a bridge over troubled water
I will lay me down

I want you to know, there is a sweetness in these times as well. A comforting, tender portion of His love I feel poured out and though it only eases the pain from wound at first, slowly it heals a little at a time. How people get through these times without the balm of His love, I will never know. But for me, He is my friend who is here, taking my pain and taking my tears and whispering “It’s ok, it’s ok”.

If you need a friend
I’m sailing right behind
Like a bridge over troubled water
I will ease your mind

Do you know this Jesus? The One who comes and dries your tears and heals your broken heart and comforts your aching soul? It’s beauty from the ashes, His love and tender mercy. It’s a Jesus, that until this valley came, I didn’t know either.

And while the rut is deep and dark and hurts so much, having Him here closer than ever, is a beautiful, beautiful thing.

My bridge over troubled water. I know He will lay it all down for me, to pull me up and out. Every time I stumble it’s like a 911 to heaven and here He comes, urgent and ready to take my broken and make it whole again.

I hope you know He will for you too, whatever rut or valley you fall in. I really, really hope you know that.

Like a bridge over troubled water
I will lay me down

He heals the brokenhearted and binds up their wounds. Psalm 14:3

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(16)

A Little Boy Growing Up With A Sick Daddy

By sglidden · (16)

Our son is 11, and he eats. A lot. And often.

He eats and eats like the Hungry Caterpillar in the book by Eric Carle. I tell myself like a caterpillar in a cocoon, this boy of mine is blossoming into a young man with all that food. I need something to hang on to as my grocery bill climbs dollar for dollar with the number of days that make up his age.

He’s also into all things survival. He loves to get a fire going with his flint and steel that came with his Bear Grylls survival kit. In our little fire pit out back, he’s been known to get a rip roaring fire going in no time. Which of course, results in a night of S’mores and hot dogs on a stick (and no dishes for mom!). I’m finding that raising a growing boy means that all things eventually rotate back to food. It’s a neat little circle.

He’s a little boy who also misses his daddy. The hole in my sons heart for a daddy to throw him a ball and take him fishing and hang with him while chopping wood grows a little bigger everyday.

His daddy tries to do what he can, and one day that meant sitting by the rip roaring fire our son built. As the night grew cooler, it was time to head into the house. On the way in on unsteady ground with weakening legs, daddy took a bad fall. And our son stood by and helplessly watched the whole thing. What’s a momma, a wife to do, when my two favorite men lay there not only hurting on the outside, but on the inside too?

After things settled and ice packs and band aids and reassurances were spoken, my son decided he wanted to make his daddy a ramp to go up and down the stairs so he would never fall outside again.

So we got some help and built a ramp.

My son was as proud as a peacock while building. He wanted to order a large sub for lunch, because “I’m doing man’s work today” he said. There it is, I think, that blossoming.

But more than that, I was seeing his little boy heart heal and grow stronger because he was doing this thing to help his dad, and it mattered and was important, and he was no longer standing by helplessly watching. He was doing something, and it meant everything. He was doing man’s work.

“Is that all you do is eat?” I teased him as he stood in front of the open fridge scouring for food.

“That’s not all I do” he replied. “I also build wheelchair ramps for my dad”. He was as proud as a little boy could be.

Man’s work, I tell myself.

And my momma heart beams with pride and breaks with pain all at the same time. Because it’s just not right, this whole thing with my boy and his daddy and wheelchair ramps and terminal illness and disease that takes away so much of my little boy’s childhood.

But I pray that he would always seek to do man’s work. Because this world needs a few good men who aren’t afraid to grow up and do the hard things, even when it hurts.

Don’t you agree?

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