Behind the Wheelchair

There were a lot of things that changed about my life when I became a caregiver. I used to run on "go" all the time, loved to be in a crowd, and enjoyed hiking, a lot.

The social isolation has been one of the most difficult aspects of caregiving for me. But I didn't really change that much as "me" - I just had to change a lot of what I did. I was still the same person who loved the same things I did before caregiving became my lot in life. I just had to stop many of the things I was doing because something more important needed to be taken care of, my son.

Even though I've always been a very (and I mean very) social and personable person, it's more difficult to develop relationships now for me. I know one reason is that we can't do some of the things others do to build relationships. You know, there's no meeting up for a movie, a cup of coffee or a walk in the park. Even if we do schedule it we have to be willing to drop our plans at the last minute because our loved one is not up to it, they (or we) become sick or any number of crazy things that can happen.

And sometimes it's because people don't see anything past our caregiving. They forget we are a real person behind the wheelchair. Maybe they don't think about getting past the caregiving to the person we are inside, maybe they don't know how. And maybe we don't know how to get out of the box either.

Even though caregiving has brought about many character and lifestyle changes in me, I'm still me. I still like music, I love a good game, I'm all up into sports and I still like my coffee, a good funny movie and my guitar. Sometimes I feel very alone because people don't look past the wheelchair at this person....a caregiver is still a person. It can be a very lonely place.

I'm so thankful that God is intimately acquainted  with me. He knows me inside and out - and he's not afraid of the wheelchair. Psalm 139 gives us a glimpse of how closely He lives to us. He knows my thoughts (cuss words included) and He's not scared away. He feels me and still presses in to be intimately acquainted with me. I love this verse in Exodus 34:14 it says:

You must worship no other gods,

but only the Lord,

For He is a God who is 

passionate about His relationship with you. (NLT)

So even though it feels like those around us don't "push past" who we are and the role we play as caregivers, God is not too scared to be passionate about a relationship. He still wants to know us inside and out. He didn't put any disclaimers on this or any other verse that says, unless you are a caregiver. He still loves us, cares for us, and wants to be in a close relationship with us.

Today I am going to purposefully rejoice that He wants to be with me, even when I can't understand why. I will turn my thoughts to the truth that He passionately pursues me... me.. the caregiver. And I will bask in the fact that He isn't looking for a way out of an "uncomfortable" situation. He doesn't feel awkward talking to me or being with me. I will turn my heart to Him to welcome Him into my world today. Will you join me?

When in Doubt

When I woke up this morning I was having lots of trouble adjusting my attitude. I'm sure that's foreign to many of you - but after a night of tossing and turning it just happens. When sleep evades me - attitudes abound.

Did you ever just doubt it all? I doubt He loves me, doubt He cares for me, doubt He is with me, doubt He protects me... and the list goes on and on. My mind goes fast so in a matter of seconds I can have every area "covered" in doubt and frustration.

My thoughts run along lines like if He loves me and truly cares for me why has this happened to me? Is this what He really thinks about me and my son? I'm sure I'm the only one who has these little switches that get flipped and then a barrage of questions are hurled out all at one time. It seems worse during times of illness whether it is me or my son.

This morning I got my son bolused and situated and then brought my coffee to my recliner kicked my feet up and started trying to sort through all these questions. For some reason, I'd like to think God led me to it - I thought of the old hymn The Anchor Holds. It remains a favorite in my family. I thought in particular of the part that says:

The anchor holds

though the ship is battered

The anchor holds

though the sails are torn

I have fallen on my knees

As I've faced the raging seas

The anchor holds

in spite of the storm...

It doesn't seem to matter to God how much I doubt and pout - He always has an answer. Immediately my mind went to Paul's shipwreck in Acts 27. He basically told them I told you not to take this journey to start with and this damage wouldn't have occurred then he says keep up the courage and he told that to them two or three times more. 

I figure since they were warned by God to NOT go on the journey and went anyway - and God gave them courage to deal with the situation- He can give us courage too. We are here by no fault of our own. These guys barely made it from the boat to land. Many of them floated on whatever pieces they could find. I feel that way sometimes; like I'm clinging to anything solid I can find. Just let me make it to land.....just for today.

So then another scripture comes to mind. Someone shared it with me the other day and I've read it about every day since. It's from the Message Bible and it says this:

Don't for a minute let this Book of the Revelation be out of mind.

Ponder and meditate on it day and night,

making sure you practice everything written in in.

Then you'll get where you are going;

then you'll succeed.

Haven't I commanded you?

Strength! Courage!

Don't be timid, don't get discouraged.

God, your God is with you every step of the way.

I have to say that caregivers in general are not a timid breed. We've taken life by the horns and bulled our way through. We can be some pretty tough critters when we need to be. But we do get discouraged, tired, weary and worn. We have to reach out there and fight for all sorts of things as we advocate for our loved ones. Today we can also take something else - Let's take courage. 

God hasn't abandoned us. He hasn't forgotten us. He is still with us. Faith is knowing that when we definitely don't feel it.

Today I will encourage myself with these scriptures and I will turn my thoughts to the fact that He is with me every step of the way. I don't get to skip any steps - and they may all feel like they are uphill... but He has not left my side. I'm going to grab hold of what little bit of faith I feel I have left and trust Him for one more day's worth of strength and courage. Will you join me?

When God Looks at Me

Sometimes I wonder just what God sees when He looks at me. Just like everyone else I wear many hats and play many roles in life and being a caregiver is just one of them. But when He looks at me, does He just see a caregiver? Does He see a mother caring for her child? Or perhaps He sees me as a grandmother playing with her grandchildren.

Maybe He sees me as a sister, or as a child caring for her aging parents. Or that crazy aunt everyone needs in their lives! lol

Does He look at me and see a runner? A blue belt in taekwondo?

He put the gift of music in my heart - maybe he sees a guitar player or a keyboardist. Does He see a songwriter or a singer? Maybe He sees me as a writer or a poet....

While I was meditating on this the other day this little poem popped out.

I see all the things you do...

I appreciate every part of you.

I see all the ways you spend your time

But when I look at you....

I see you are mine.

We are His. We belong to Him and He calls us His own. He doesn't just see us as a caregiver or any other role we play - He sees us as His precious possession. We are His. 

With these thoughts running around in my head I thought of a childhood experience. I had a doll when I was about 6 and my cousin J.R. loved that doll. He was a couple of years younger than me and we were rivals resembling that of siblings. I would not give J.R. my doll and would hide it from him when he came to my house because I didn't want him to carry it around and try to take it home with him.

His parents finally bought him a doll just like mine and I was relieved. That poor doll though. He carried it under his arm everywhere he went. I had given my doll up and gone on to more important things in life and J.R. was still toting that dirty, limp doll every where he went. One day the body detached from the head. But J.R. didn't let go - he just kept carrying that head around with him everywhere he went. Why? Because it was his. It belonged to him.

Even in our most broken state - God will not let go. He loves us far beyond J.R.'s love of that doll. But he loves us and carries us with just as much passion. We are His! When He looks at us - He sees us and says, "that one is mine!" He claims us - even when family or friends won't - He is not ashamed to call us His own.

Today I will meditate on the truth that I belong to Him. My thoughts will be on Isaiah 43:1 where God says, "I have called you by name; You are mine." No matter what comes today - I will hold on to the truth that He gladly calls me his own. Will you join me?

The Flip Side of Everything

I've talked a lot about seeing God. My favorite story used for reference is Hagar when she realized God saw her and her son. But until this week, I hadn't thought about the flip side of that.

I was reading in Genesis about Abraham offering up Isaac. In chapter 22 verse 8 Abraham said "God will provide for Himself the lamb for the burnt offering." I know God does indeed provide for us and I have certainly experienced that on my caregiving journey. But the margin caught my eye as it gave an alternate interpretation of see for the word "provide." My loose interpretation is God will be seen.

I often rejoice in the fact that God can see me and knows my situation intimately. But I paused to ask can I see God?

Honestly, there are those times when I don't feel I can see Him at all. Usually it's at 3 or 4 in the morning when my son is running a fever or moaning in pain and I feel out of options. I must admit I have not acted much like a believer on some of those occasions. There have been many tears shed during those midnight hours and I've cried out God, where are you now? I must also admit I've said lots of other things to God that should not be said - but they were my honest feelings at the time. And I really believe He's big enough to handle our hurts, fears and feelings just as we interpret them in time. He knows eternity is bigger.

During those times that are rougher, it can be difficult to see God. But then He seems to march right into our reality and make Himself known and seen. I saw Him in the caring eyes of two little girls at the grocery store. They asked their mom if they could pray for my son. They had such a true compassion - I'm sure it came from Him.

I saw Him in a young man who reaches out to us and does a 5K to raise funds to help us get a handicap van. I saw Him in the xray technician last time we were in the hospital. I can't explain it, but  the way she touched my son with caring gentleness when taking an xray moved me to tears- because I saw His touch in her hands. (I even talked to her about it.) I've seen Him in the new church we found; people actually spoke to my son (who is non-verbal), accepted him, and even touched him....acted like he exists.

We can get so caught up in the busy-ness of caregiving and forget to see Him in our day to day lives.  But He is present and He is paying attention. Sometimes we just have to look for Him.

Today I am going to purposefully look  for His presence in my life. My thoughts will be on His ever abiding presence and how close He is even if I don't see or feel His presence. I'll look for Him  for when I seek Him - I will find Him. Will you join me?

What about Jakob?

I've read and reread the story of Joseph, and growing up in church it was one of the common Bible stories that we heard over and over. On one hand I think the caregiver can learn from Joseph's patience. He had a dream that seemed could never come true. Life betrayed him. I know the scriptures don't go into Joseph's thoughts but he had to have some serious dedication to God to not lose it during those waiting years.

I think of the betrayal by his brothers. Then the betrayal by Potiphar's wife. Not only did his brothers put him in a pit until they could sell him to the next passerby, Potiphar has him thrown into prison for something he didn't do. He spent a lot of time waiting, wondering, and trying to figure things out I would assume.

While our stories usually focus on Joseph and his determination to serve God through his trials, this weekend as I was rereading the story once again, I thought about Jakob.

In Genesis 37, it says that Jakob wept for Joseph and goes on to say he refused to be comforted. His other children all tried to console him, but his reply was I will go to my grave mourning for my son. He had no idea that Joseph was going to be his leader some day and he had no reason to believe that Joseph was alive - no hope that everything would be okay one day. He lived in grief.

The caregiver can experience what is called a living grief. Depending on the particulars of our situation, we can lose a lot. For my situation, my son is gone, but his body is still here. I have grieved the loss of my son but can't quite "put it away" since there was no funeral or burial. The grief continues. It's the same with my mom. She's experiencing dementia and is not really who she used to be. I have to grieve the loss, even though she's still technically here. 

Many caregivers experience this living grief and it can be some very complex emotions to work through.You can't just "move on" but there's still a sense of loss. Caregivers have given up something on some level no matter what their situation. Some give up jobs, freedom, friends, and many other aspects of life to care for a loved one.

1 Corinthians 1:3 says that God is the God of all comfort.  I really like this little word, all. God can comfort Joseph sitting in the prison cell wondering where the promise is; and God can comfort Jakob who feels like the promise was stolen and is gone forever. God can feel us. He gets us. And He will comfort and strengthen our hearts.

Today I will turn my thoughts to the fact that He gets me. He understands everything I am going through and He pours His strength into me - and gives me strength for today's journey. (everyday is a journey for caregivers) My meditations will be on the truth that He loves me with the same love I have for my son. (Insert whoever you are a caregiver for.) And instead of focusing on the loss today - I'll focus on His provision, His love, His strength, His patience with me and the grace He gives me to make it one more day. Will you join me?

Do We Have What it Takes?

The question do we have what it takes can seem kind of shallow and unnecessary to ask caregivers, right? We've already figured out how to roll up our sleeves, dig in and get it done. We have developed our own skill set some of which were part of our makeup before becoming caregivers; but we have also honed many skills as we have gone along.

We learned to advocate, picked up on the right keywords to get things done, learned medical vernacular, figured out how to get the "right numbers" when we really need something done and opened our homes to total strangers to accept help. (nurses, doctors, aides, etc)

While we are still the same person we were before caregiving - we have also evolved. We learned how to get up in someone's face. I recall when my son was still in the hospital and I discovered his catheter had had absolutely zero output all day - he was in horrible shape. They couldn't send anyone in because the nurse was at lunch. Madea's words ran through my mind  you only have to go crazy up in here one time.

Now I am a very composed and gathered person for the most part as I was in ministry for many years and you learn how to keep your composure at all costs. But I purposefully chose to go out in the hall and lose it. And I did it up good! Since I had been there for over 3 months and never made a scene nurses came from everywhere to see what was up with mama. They took care of my son's needs right then. I share that to say - as caregivers - we learn to do what we need to to get the right things done.

We know what we have to do and we are willing to do whatever is needed to ensure our loved one is well taken care of. But do we have what it takes to wait? I have to say many times I do not. This morning during my daily devotions I came across (okay so my Bible fell open to) Psalm119:114 and it leaped out at me. It says this

You are my hiding place and my shield

I wait for Your Word...

When my mind is swirling with all that I have to get done today and everyday, can I slow down and just wait for Him? Sometimes I need to just chill out and wait for His grace, wait for His hope, wait for His strength to flood my being. It's so easy for us as caregivers to get pulled out and taut to where we have zero relief. When I find myself in this position it just makes it that much harder to wait for Him and to hear Him when He speaks.

Today I will take many deep breaths as I refocus on waiting for Him. I will turn off all the noise in my head and purposefully rest in Him. My thoughts will be on His peace, His love, His abundance, His grace and His mercy as I shift my focus from myself and back to Him one more time. Today...I wait. Will you join me?  

Are There Two of Me?

One of the things I've found caregivers must learn to deal with is the wide range of emotions. I'm not even talking about the "big stuff" like depression and the like. I'm talking about the day to day fluctuations of sadness to joy, contentment to unrest. Maybe I'm the only one who thinks they are emotionally schizo. One minute (or second depending on the day) I'm so happy and things are going well, and the next I've bottomed out and feel like a failure as a caregiver. On any given day emotions can vary greatly. My son does something new and I'm full of joy but then the next second I think that I should be celebrating his marriage or his first child instead of the fact he finally touched his nose. Is this just me? 

This morning in my daily reading of scriptures I found something of interest to me in Psalm 108.The first 5 verses or so David talks about how glorious God is. He seems to be full of praise and waiting for God's answer to his prayers. Then his tone changes; and the last three verses are quite different. Now the last verse was a popular song in the 70's church, We sang and sang about how valiant God is and how He was going to tread down our enemies. It was a fun, uplifting song. But this morning I noticed that just two verses back - David wasn't feeling it.

In verse 11, David feels as though God has rejected him. So in just a couple of verses, he goes from Where did you go, God?  to God is a valiant warrior who is treading down my enemy. And just for today - I could relate. One second I feel totally abandoned by God - left alone in this world to deal with a trying situation; and the next I know that it is God who is giving me strength to fight this battle and I can sing His praise. Sometimes I feel like there are two of me - two extremes - extreme despair all the way to extreme thankfulness... and you know what? It's okay. God gets me. And He is beside me as a valiant warrior to defeat my enemies (fear, doubt, confusion....)

So today I will meditate on the first 5 verses of this chapter. I will like David, determine to sing to the Lord and offer up praise - even if it is a sacrifice. I will sing of His loving kindness, mercy and truth. Those things don't change based on our circumstances.  I will exalt Him in my heart and let Him reign over my crazy feelings. Will you join me?

Not Invisible to God

How many times have we been places and it seems like we are invisible in the crowd? We actually went to a church one Sunday and not one person spoke to us, they all just walked right around us like we were not even there.

This past Sunday we visited a church and so many talked to both of us - they spoke to my son and get this - they even touched him. Unless you've been there you won't understand that. It can start to seem like we have leprosy or the plague. I actually fought back tears as I saw person after person touch his shoulder and speak directly to him even though he didn't seem to care. (I think he wanted to stay in bed!)

Many times people encourage us to "get out of the house" without realizing what it really costs. Most of the time we are totally alone in our struggle. Over time, I've gotten used to taking up a whole aisle in a store as I push Chris in front of me and pull the basket along behind. We are quite the sight. This is just one setting where we can feel like we stick out like a sore thumb. But add to that the fact that we are primarily politely ignored and it can feel like we are in an emotional vacuum. Standing in the middle of a crowd we seem invisible.

Being acknowledged this week as real people had me thinking along these lines. I started thinking about how He is intimately acquainted with all our ways; and that He saw us while we were forming in our mother's womb. He really does see us; even if we are invisible to the world. (Psalm 139)

My thoughts raced back to Hagar in Genesis 16 where Hagar had been forced out from Sarah after she got pregnant and cocky.The angel comes to her and tells her that the son in her womb is going to be a donkey of a man and that he's going to live a life at odds with basically everyone. But her response is perfect. To me the angel didn't say real "nice" stuff about Ishmael - which by the way means "God heard."

Even though the angel told her Ishmael is gonna be a wild one - Hagar says this: "You are a God who sees." She was seen she was not invisible to God. That's what she got out of this angelic encounter - that God could see her and where she was. That's so important for us caregivers I think - just to know that He has not abandoned us like so many - He is here, He knows, He hears, and He sees us.

Today I will meditate on the truth that God knows right where I am and He knows the true condition of my heart. He sees the situation and can see into my heart - He sees the confusion, the loneliness, the frustration...and it's okay. My thoughts will be on His ever abiding presence and His habitation in me today. Will you join me?

Whatcha Lookin' At?

The daily rigors of caregivng can get to you eventually. Well, actually, it's not the caregiving that always puts us into overload. We get used to the day-to-day activities we have to perform. It's not unusual to go from daylight to dark without much of a break just to get things done. And somehow we even get used to those unexpected things like an extra trip to the store to buy supplies or a "quick" trip to the doc or urgent care.

Those are extras that we become accustomed to and we have those "special modes" we slip into. I know exactly what to grab as we head out the door to the ER. And when we get there I am somewhat prepared to stay a few hours to a few days whatever it takes! I'm not saying it's easy- we just learn how to make these adjustments on the fly. Adaptability is one of the first skills caregiving forces us to master. (smile)

But let something happen outside our normal hectic zone and it's a major adjustment. Honestly, for me it's mostly my attitude that needs to be adjusted. I do pretty good in my normal, but crazy schedule but if I get sick or something is big enough to interrupt the daily schedule - I can lose it. (I know no one else has ever done this or felt this way - right? Is it just me?)

When things finally settle down back into the normal frenzy we've grown accustomed to - we must shift our focus. This morning I was reading in 2 Chronicles 20 and came across verse 12 which says - O Lord we are powerless before this great multitude who are coming against us; nor do we know what to do, but our eyes are on You.

Even though we are not facing a huge army and may not have thousands physically gathering against us, it can feel like life is stacking up against us. Daily life is the multitude coming against us; and we may not know what to do. Then there's a "but" - but our eyes are on You. I always go back to Psalm 121 - I will lift my eyes (action required) to the mountains -where does my help come from? My help comes from the Lord Who made heaven and earth.

Today there is a lot on my plate and many things to work through on top of the already full plate I had. And I really don't remember asking for a second helping! lol. But I will chose to look to Him for peace, wisdom, direction, and help. My help comes from the Lord - we know sadly enough that no one else is likely to show up! lol.

Today I am going to shift my focus from all the chaos I see around me - to Hin. I chose to place my eyes on Him and look to Him for what I need just to make it through today. He is ever present - when I feel overwhelmed (or even if I don't) I will direct my thoughts to His ever abiding presence. I will make a conscious effort today to keep my mind steady on Him. Will you join me?

Faith, Hope and Depends

As a caregiver, there are just some things about which we cannot speak. We silently feel each other's pain and have an understanding of what a normal day may look like. We wipe up drool, pick up spilled (or spit out) food, and perform tasks we cannot speak about to protect the dignity of our loved ones. But we all could share some crazy stories if we were alone! Are you nodding your head?  Even though we don't speak about it, we understand.

We really do seem to live in an alternate world from everyone else. On a daily basis we deal with all the normal  stuff - and then our own set of what's normal. That might mean we have learned how to bolus a feeding through a tube, check 02 levels, take blood pressure, give a bed bath and change depends. But even though what we do daily looks a lot different from the rest of the world's normal day - spiritually we are no different at all.

This morning I was reading Proverbs 17:3 that says: The refining pot is for silver and the furnace for gold, but the Lord tests the heart. On one hand I'd have to say that caregivers basically live in the furnace. And on the other hand, I still have to say we live in the furnace! (smile) Life is always trying, even on the best of days we deal with our own set of struggles. But God has no different requirements for us than anyone else. We don't get a get out of jail free card. There are no exemptions - He's still working in us to make us into His image.

Sometimes I find this frustrating - other times it's comforting. Why do we have to deal with all of this, and still let Him work out issues on faith, trust, and hope? Don't we deserve a break? And on the other hand, it's a comfort to know that He did not abandon us - but still has the same requirements and expectations He always had for our spirit man.

So even when we are up to our elbows in... whatever we are dealing with - He still is working in us. He still is turning up the fire to refine our faith. He is still working His good will and pleasure in us. His Holy Spirit is still in us - strengthening us - and building the relationship between us and Him. I'm not sure why, but that actually gives me hope and comfort.

Today I will look at the fiery furnace differently. My thoughts will be on how He uses it to refine me into His image and I will meditate on how He continues to mold me and work with me even in this situation. I'll think about His unchanging love, mercy, and faithfulness. I will let His spirit comfort me today as I move closer to Him in my heart. And I will rest - in the midst of the fire and depends....I chose to trust His care of me. Will you join me?

What do you see?

I have a love-hate relationship with James 1:2. I love it because it's in the Word of God; but I hate it that I have to do it! Some days I don't want to "count it all joy." I'm sure no one else feels that way, I mean after all as believers we are not supposed to feel different than what the Word says. But there, I said it. Sometimes I can't see past my situation to find any joy at all. But maybe that's why verse 5 follows.

In my mind this first chapter of James has always been all divided up into nuggets. Verses 2-3 explain how we are to address the trying of our faith through the various trials and difficulties we face in our lives. And then verses 5-6 tell us to go ask for wisdom. Two totally separate actions, right?

This weekend as I was watching Francis Chan on YouTube (that was our Sunday morning "church" service!), something he said allowed me to connect these two sections. We are supposed to be able to find joy in our trials since they are working in us spiritual maturity and eternal rewards. Verse 5 is not a tag-along scripture - it's what we do when we can't see it.

For me life as a caregiver has been crippling socially, emotionally and even spiritually on some levels. If I am not careful (and most of the time I'm not.) I can be blinded by my situation and fail to see what God is after. I fail to see what He is working in me because of what is going on around me. I have felt like those in Psalm 137 who hung their harps in the willow and refused to sing because of their captivity. They said, how can we sing the Lord's song in a foreign land? I have felt that way.

I'm the question queen and I'm full of them. For nearly 7 years now I've asked questions like: How can I go on? Why can't life make sense? Why did God give me dreams in the first place? Will I ever feel whole again? What kind of life is this? And so on. Caregiving for many of us is not like a journey you take until you reach your destination - it just goes on and on  with no end in sight. How do we count that all joy?

I have to go back to Job to find some answers. When he lost it all he said blessed be the name of the Lord. I did not pass that test! We must lift our eyes up beyond our day-to-day grind. Even though our schedules are hectic and repetitive we are going places spiritually. Even though we cannot see it all the time, He is working in us His good pleasure. He has not given up on us and He has not abandoned His project. What He is working in us is eternal. What He is doing in us will last past time - it will endure past what we see before us. He is still alive in us and shaping us into His image.

There is not one scripture that says He cannot work within our situations. He uses our lives to mold us. I had a friend who said God doesn't waste a thing. And I have to agree. When we yield our crazy abnormal lives to His hand - He can make it a thing of beauty. But we will have to look past what we see to what He sees to "get it."

Today I will not let my hectic day block the view of what He is doing in me. As I go through the day I will meditate on the truth that He has not abandoned ship - but He is still at the helm and will take me safely through. And I will choose to rejoice that He is working in me things that will last through eternity. I can't see them here - because they have value in the spiritual realm. I will count it all joy that He is still working in me and on me to bring about His desires. Will you join me?