Some Things Never Change

Change is inevitable, whether you are a caregiver or not, it's just a part of life. But for the caregiver, change can be the only constant in our lives. Even though every day can seem like we do the same things over and over again, there's always a new wrench or kink thrown in to disrupt, it seems. Frequently (sometimes daily) I have to stop, take a deep breath, and get a grip before proceeding to make a move or decision of some kind. This weekend I was thinking about how much life changes with caregiving.

There have certainly been some times when I wanted to throw in the proverbial towel - and throw anything else in "there" with it....I am typically very routine and living in a state of constant change not knowing what the next second is going to bring, has been difficult. Period.

But this morning I started thinking of what hasn't changed over the last 8 years. I was reading in Isaiah 61 about rebuilding the ancient ruins, and I thought of how my faith walk had lain in shambles, or at least I had perceived it that way. Ultimately, it was simply being redefined and rebuilt.

My thoughts started running along the lines of how God had never left me during the hottest days of the furnace. Even when my faith was shaken down to its core - He didn't abandon ship and toss me aside. He stayed right there. Even though my whole life changed - He did not. I changed. A lot. But He didn't change one iota.

I came up with a few things that have not changed even in the furnace. These are things that are NEVER going to change no matter what we face - what we do without - what choices we make...somethings never change:

The sun rises and sets every day
Weather patterns continue
Nature still cries out to the glory of God
Babies are born
People die
Rainbows come out after a rain
Floods and droughts still exist
Grass is still green
Plants still grow
The sky is still blue..and has clouds sometimes...

His righteousness still covers my sin
Jesus still died on the cross
I'm still forgiven
I'm still righteous
I'm still hidden in Him 
I'm holy in Him
His Word is still the standard
He is still my provider
He is still ever present

This list could go on and on...and in my high octane Google mind it did! I'm just so thankful today that even though my world was shattered nearly 8 years ago, God did not change. I know we usually shake our heads and say some things never change and it's more of a negative. But today - when I say some things never change - I'm thinking of all the things that are constant, have always been constant and will always be constant! As I took my son out for a run in his racing chair the other night we saw a beautiful sunrise, a wonderful reminder that what God puts in motion - will continue in motion....until HE says.

Today I'm going to meditate on the things that won't change. I'm going to rejoice in the fact that His love, mercy, grace, compassion and care is FOREVER and ever, and ever, and ever.....Rather than grieving over the past and the changes life has brought, I'll turn my thoughts to the power of His righteousness and other attributes that cannot be altered by time. And I will be glad in Him, I'll stay hidden in Him and I will rest in Him and trust Him for one more day... Will you join me?

Office Hours?

Good Monday morning world! It's been a crazy place around here of late. I don't really know why I say that as caregiving makes for all days to be crazy! You know, just about the time you think you're holding your own, got the new norms all figured out and have settled in for the duration - everything changes.

How does that happen?

Why does that happen?

For the first time since my son's accident I somehow got signed up for home health. We only get so many days a year since there's no actual insurance involved and I usually save them for "just in case" situations. I've only had two instances where I felt their services were necessary. Well, when the doc was here last Monday - she decided we should let home health come change his feeding tube out. Evidently she signed us up. It's already taking quite the adjustment.

It may seem minor to those who are not caregivers - but even the things that seem the smallest and the simplest can turn everything topsy turvy. You know? (I know you know!) So last week they ended up coming for something every.single.day. I appreciate they got the tube replaced but sheesh. It might have been easier to take him in! lol

I'm not really used to having someone on call 24/7. Usually doctors are only available for calls inside certain hours so this is kind of weird. But I think I might like having more people involved in the decision making process if he does get ill. We shall see.

All this newness got me to thinking about how "on call" God is. Even when I don't feel like it, He is there when my heart cries out. I know some of you understand those midnight hours - two, three in the morning when you are spent physically, mentally, emotionally - and your loved one is sick. Those are the times I've gotten downright honest with God. I tell Him how I REALLY feel - lost, depressed, confused, angry, alone. And even in the midst of my outbursts - I know He is there.

I'm so glad He doesn't sleep. He doesn't take weekends off. He doesn't need a break. He's ALWAYS on call! And just because I don't feel like He answers - it doesn't mean He doesn't listen or care.

Today I'm going to be thankful that He walks in this furnace with me. He didn't leave me to navigate the fires alone. My meditations will be on His ever-abiding presence. I'm going to rejoice that He doesn't have office hours or answering services. I'm going to run to Him today with all my strength. I'm going to talk to Him like I know He's really listening - because He is. And I'm going to trust Him with one more day. Will you join me?

Exiting Crisis Mode

There can be many aspects of caregiving that are weighty. Even though each situation is unique and has it's own set of circumstances, it's never "over" and you're never "done." Tomorrow always awaits with mostly the same tasks today demanded. And even though the initial trauma or gravity that may have occurred at the onset of the caregiving experience are over - the situation usually means we may live in a sort of crisis mode. (Maybe it's just me.)

Two things have been on my mind over the weekend. One is the social isolation that is customary in a caregiving situation. The other is how people tend to act like you had a crisis in the past but they seem to think it's over now. I think this can contribute to the isolation many caregivers experience.

For instance, when we lived in the hospital for the first 4 months of our journey, we had visitors frequently. Not as much toward the end, but people still came to visit from time to time. We could usually expect someone at least on the weekends. When we came home - it felt almost like we were put on a shelf as if the crisis ended. But in reality - it was just a different level of crisis as we brought the hospital home with us.

Caregivers are resilient though. We bounce back. We adapt. We adjust to a new normal and just keep putting one foot in front of the other. We do what we do and just keep doing it. With or without help. With or without interaction that seems to slowly subside over time.

Obviously, all is not lost. Our relationship with our heavenly Father deepens as we press more into Him. We adjust to our circumstances, partly because we just have to; and partly because we are too busy to really stop and think about it a lot. But for me, there are those times when I feel engulfed in loneliness and it makes it difficult to navigate spiritually.

The last couple of days have been that way for me. It leaves me feeling pain on every side. It is deep and intense and I feel like it is inflicted to make me lose focus and be counted out in the fight. It's okay to realize how deep the pain is - and how deeply our caregiving experience is affecting us. Living in crisis mode can affect us on every level.

So what are we to do? How do we get clarity in the middle of the fight? These were my questions over the weekend. I turned my heart to two different psalms. One I caught myself singing. It's Psalm 61. The heartfelt prayer of the psalmist cries out:

Hear my cry O Lord
Listen to my prayer
From the ends of the earth have I cried out to You.
For you have been my shelter from the storm
A high tower from the enemy.
When my heart is overwhelmed
Lead me to the rock that is higher than I.

I find myself singing/praying that during the times caregiving seems overwhelming. The other one is Psalm 13 where the psalmist talks cries out to the Lord and asks Him some very good questions. 

How long will You forget me...
How long will You look away...
How long do I have to struggle...
How Long will my enemy be winning...

But the last verse of Psalm 13 is key. In it the psalmist says this: 

But I will trust in Your unfailing love
I will rejoice because You rescued me
I will sing to the Lord
...because He has been so good to me.

And this is where I am again today. I see the turmoil around me. I feel the grip of living the caregiving lifestyle... and yet I see He has been so good to me in the midst of it all!

Today I will purposefully acknowledge His presence. I will trust Him, rejoice in all He's done and I will sing from my heart about His unfailing love and care. My meditations will be on what He has done and how He continues to work on my behalf rather than on what I see surrounding me. I will turn my heart to trust in Him... for one more day. And I will rest in Him - will you join me?

I Have Allies?

As usual, I was busy before I got up this morning! That's not really much of an exaggeration, either. I was up around one this morning with Chris - he was uncomfortable. Then at 4:30 my alarm was not a pleasant sound at all; but I got up and around eventually. I was barely moving but my head and heart were running a foot race to see how my morning was going to start.

I can't stress enough to never underestimate the power of a quiet spirit. I took some time to refocus and shift, worked a little bit and finally settled down into a be still moment. Boy, was it worth it!

I opened my Bible directly to Psalm 144 and read the first two verses as I had them underlined:

Bless the Lord Who is my rock.
He gives me strength for war and skill for battle.
He is my loving ally and my fortress,
My tower of safety, my deliverer.
He stands before me as a shield, and I take refuge in Him.
He subdues nations under me.


I spent a few minutes meditating on these verses and I love how David trusted in the power and strength of God. He knew God stood with Him. He believed God gave him both the skill and strength for the battle. He saw God as a safe place, a fortress and a shield. And David chose to take refuge in Him. A fortress can't protect you if you're not hidden inside. A shield offers no protection if you get out from behind it. God provides and protects - but we have to be behind Him and in Him - our position is important to the level of protection we receive.

David uses some strong words to describe the way the Lord protects him and fights with him. But nestled in the middle of all these powerful descriptions, David says God is my loving ally. That kind of caught me off guard this morning. And he didn't just say God is my ally - that would indicate an agreement between two parties to share resources against a common enemy with one's own best interest in mind. We might have an ally just for the sake of peace and protection - but David said God is his loving ally. That's more commitment than just saying I'll help you out if you need it - God is committed to the battle - committed to the journey.

Today my meditation will be on how I can remain calmly (that's a key) hidden behind Him and let Him shield me. I will focus on staying hidden IN Him and letting Him be the fortress surrounding me. I will purposefully place myself in Him for safe keeping and recognize Him as more than just being "on my side." I'll think about how He is my loving ally with my best interest at heart. And I will rest in Him and trust Him for one more day - will you join me?

Time to Refocus?

This morning I was busily working around the house. I started getting up between 4 and 5 in the morning to get some work done on my jobs. This helps me get in a few hours before the day gets out of hand. Well, that's the plan anyway - I can't say as it is actually working or not yet. 

Since I have an aide now (thankfully!!!), I have to separate our laundry out again - I'd been doing it together but the aide doesn't need to mess with my stuff so I divided it out - and found I needed lots done and got started on it early this morning. I needed to get it done before the aide comes early this afternoon.

I was trying to knock out the laundry, put some bread on in the bread machine, fix breakfast and Chris' early morning supplemental bolus. Felt like a busy little bee hurrying around to get things done. Soon though, I realized I was getting tense, upset and stressed out trying to get everything done. My mind was shifting into high gear.

But underneath this turmoil, I could hear a song in my heart. It was Indescribable by Chris Tomlin. I heard myself singing along with the lyrics in my heart: 

Indescribable, uncontainable,
You placed the stars in the sky and You know them by name.
You are amazing God
All powerful, untameable,
Awestruck we fall to our knees as we humbly proclaim
You are amazing God

As I heard my heart singing along with these lyrics it caught me off guard. I was so stressed, so hurried, why was I hearing music? Then I wondered why am I hearing that song? So I thought about the words... You placed the stars in the sky and You know them by name.... 

I took just a couple of seconds to shift my focus. I started thinking about how huge and powerful God is, I thought about creation and one of my favorite scriptures in Psalm 104:19 that says: You made the moon to mark the seasons and the sun that knows when to set. That always makes me smile because I think about how the sun never comes up and forgets to set. The seasons never forget what order they come in.....I shifted my thoughts back to His majesty.... and my day, my struggles seemed so small in comparison. 

Frequently, I remind myself that my situations, my circumstances do not change Him one bit. He may come a little closer, He may hold me tighter in His heart but he is still all-powerful, all-knowing, all-consuming and His throne didn't shift when I hit life's rough waters. 

Today I am reminding myself of some unchanging truths:

His word is still true
His power has not waned
His love still captures my heart
He is still all merciful and compassionate toward His children
He is still on the throne
He is immovable

Today, these will be my meditation as I go through the day. I'll make my mind focus on the attributes of God rather than the things that get thrown at me in time. My heart will rejoice in Him and I will focus on praising Him in the song today. I will rest in Him for one more day - will you join me?


Disappearing Words

A caregiver's day is full; and that's an understatement. Many days I find myself running to Him to unload it all. It's scriptural. Paul said, or actually instructed us to bring all our cares to Him. For caregivers, that's quite a load. Some days it can also be hourly. Maybe that's just me.

It's easy for our heart to be simply overwhelmed with caregiving itself. I touch on the daily tasks a lot - but they are many and can be expansive depending on the health and status of the loved one we are taking care of.

For me it's the basic stuff - bathing, clothing, pureeing foods, cooking, feeding, changing, exercising...basically everything I might do for myself I do for my son. That's double daily tasks from the get-go. That just all the outside stuff. While those can keep me busy, it's the emotional stuff that can get me down. That's the real baggage and memories can tug on my heart. Personally, I deal with what is called living grief. My son is gone - but he's still here. And when it overwhelms, I can only run to Him.

Yesterday I sat down with my guitar. I'm trying to have quiet time everyday. More than anything else, I need to be quiet and I need to listen. As I sat down to focus on Him for a few minutes I started singing a chorus I'd written several years ago. I was strumming and singing and realized how focusing on Him had washed away all my fears, all my raw emotions.. and all my words.

I had come to Him with my gauge on "full" only to have Him take it away - as I focused on His holiness. Words disappeared when I focused on Him. Here's the words to the chorus I was singing:

Words run like rivers through my head
So many things I felt need to be said
But when I'm in Your presence, Lord
My words are few
My lips fall silent 
As I gaze at You...

My heart cries Holy is my King.
Holy is our God.

With just one gaze, His holiness washed away all my words. My heart was full of Him instead of the cares of the day. I was refreshed. I was a new person. Oh if I can remember to take the time to focus on Him instead of letting my words run away with my head. I have to remind myself that my situation does not change His holiness, His faithfulness, His Kingship, His Strength...He did not get off His throne when my little world fell apart. He is still God.

Today I am going to get outside my head. I will shift my focus to how constant He is in my shaky world. My thoughts will be on His holiness, His strength and His unending love for me..right where I am. And I will rest in Him and trust Him for one more day. Will you join me?

Help Us Remember

This morning I skimmed through the story of Joshua and the Children of Israel. I wanted to refresh my mind on how God provided for them throughout their years of traveling in the wilderness.

As I was glancing through chapter after chapter I realized how much they had to fight to get where God promised them they could be. I'm thinking it would have been a lot easier for them and God had He just picked them up and put them where He wanted them. But would they have grown?

I read over how they faced struggle after struggle in many different ways. They marched around Jericho and saw it's walls crumble right before their eyes. The crossed the Jordan river, which sounds simple - but it's not. Because of Achan's sin they were defeated at Ai; but eventually came back and won the territory.The sun stood still as they fought at Gilgal. And the list goes on until they reached the promised land, divided it up and began to settle in.

The Children of Israel faced so many ups and downs, struggles and victories over their journey. But God provided everything they needed along the way. Recently, I did some reflection on how He has provided for my son and I on our long journey too.

We can look at the history of the Israelites and see how God took care of them. He rained manna and quail down from heaven, provided fresh water from a rock, carried them across two seas, and put up with all their whining and moaning and groaning all along the way.

The more I think about it, it seems to parallel my life as a caregiver - at least the whining part! lol.

Where my thoughts settled after refreshing my memory on all this was in Joshua chapter 22. Yes, they had been complaining over the years, yes they had made mistakes. The earth literally ate the sons of Korah, Achan sinned at Ai, they created and worshiped a golden calf - idolatry and unfaithfulness was rampant all the way through. Yet here in chapter 22 of Joshua we find one of my favorite (yet little known) characters in the Bible, Phinehas.

Reuben's bunch built an altar and the priests questioned if it was acceptable or not. It wasn't protocol. Phinehas led the charge against Reuben's crew. How dare you build an altar to another god! Phinehas charged. But Reuben explained that they built it to remember what God had done for them. And so that when future generations asked about it they could be told of how God provided and cared for them over the long journey.

The two things that stand out to me are these. One, Phinehas' passionate protection of worship. He was adamant that they were not going to worship anyone but God. Secondly, Reuben's worship of God. He set up the altar so they could remember all God had done - not so they would remember all the bad stuff.

The caregiving journey is not an easy one. There are battles and struggles all the way and on many fronts. We face giants and Jerichos pretty much every day. Our own thoughts can attack us until it can be hard to stay the course. I want to be like Phinehas in the sense that I protect my heart from setting up an altar to anything other than God. And I want to be like Reuben who only remembers the struggles as a way to focus on all God has done.

In the most difficult circumstances, God has provided quite literally more than I could have ever imagined. I will be the first to say it's a difficult way to walk - but I'll also be the first to shout how God has taken down the giants that were in the way. And I have to admit, I've been a lot like the children of Israel, fussing and crying and moaning and complaining all the way out. But God has been faithful and I want to remember like Reuben all His works and how He's brought us to a good place in Him even though it took many battles to get there.

Today, I will meditate on all the works of God I've seen as on the caregiving walk. My focus will be on His faithfulness, His patience, His provision and His focus on caring for me. As I reflect on this journey and His faithfulness, I will express my gratitude to Him for all He has done. I'll smile. And I'll rest in Him knowing He's got me for one more day. Will you join me?

The Chase

  This morning, I was reading about Benaiah in 2 Samuel 23. He was one of David's mighty men, and these three or so verses are all we kn...