Repeat the sounding joy...

My last post reflected on words in Christmas words that have the power to bring us hope. This week I was thinking about a different Christmas song.

A few years ago, as I was dealing with my back problems and horrible chronic pain and my car getting totaled by thieves and my mother-in-law going through cancer treatment, I decided my new favorite Christmas song was Have Yourself a Merry Little Christmas. And it was my favorite song for this one line,

Next year all our troubles will be out of sight

That one line became the mantra of my Christmas that year in 2010. I kept hoping for the next year to come so that things would get better.

Alas, 2011 came and things didn't get much better. Bryson's car got everything stolen from it, my back problems and chronic pain got worse, and I ended up having to have back surgery. But when that song came on the radio that here, I knew that it was still my song. Next year all our troubles will be miles away. 2012 would be our year, I just knew it.

2012 did bring a lot of joy, like a new job for me, being back in Colorado with our families, Bryson starting his career as a pastor. But our troubles were very far from miles away. I had two back surgeries in 2012. I was living in tremendous amounts of pain. We couldn't get things together it seemed. My Christmas season last year was spent on the couch recovering from my spinal cord stimulator surgery. Yet I still knew, when I heard that song, that this new implant would be the key. I knew that it next year our troubles would be out of sight.

And for a while there, I thought 2013 would be it. I was starting to feel better after my last surgery. We scheduled a trip to Chicago to celebrate Bryson's 30th birthday. Bryson was given the opportunity to start at a new church and preach every week, something he felt called to do. Then June hit, and all seemed to fall apart. Bryson busted up his knee, which required two surgeries. My car died, and we needed to get a new one. Then all of this new stuff hit with my health, and it just seemed to be the icing on the cake from the last three years.

This week I was bawling my eyes out talking to my friend about this simple song from the simple line, next year all our troubles would be miles away. I don't have hope for the upcoming year anymore. I don't feel like next year my troubles will be far away as were dealing with this mystery illness. I am not sure at this point, that for my health, that ever my troubles will be out of sight. I am not looking forward to 2014 as a fresh start, thinking that everything is going to be peachy keen when the clock hits midnight on January 1.

Yet another line popped into my head after that conversation with my friend. 

Repeat the sounding joy.

Repeat the sounding joy. Through the struggles, there has been much to be joyful about. My mother-in-law is back in good health. We were given the blessing of a beautiful home, and help to put furniture in it. I had help to get new cars both times the cars fell apart. When everything in Bryson's car got stolen, our church back in Longmont provided some resources to help him get a new computer so he could continue his seminary work. We have a fun, spunky, sweet puppy in our family this year. We get to spend birthdays and holidays with our family back in Colorado. I get to work with amazing kiddos each year, and hopefully provide some love in their lives every day.

Repeat the sounding joy.

Perhaps it is time to stop looking towards and hoping for our troubles to be out of sight all the time. We have dealt with a lot as a family in the last few years, yet we must look for the joy in life. Look for the joy in all of our blessings. Look for the joy in the puppy asleep on my lap, and children's smiles every day. Look for the joy in the hope and light that Advent brings. Life is full of trials and tribulations. That much is always going to be true. But instead of hoping for the better times, and waiting for those to bring and celebrate and recognize joy, I am going to try and find my joy today. Here. Now. Even through all the mess.

Repeat that sounding joy my friends.

with us...

Yesterday I went to a new, even more specialized doctor at the University Hospital. The first level of specialized doctors could not figure out what to do with me.

The doctor gave me a diagnosis of myelopathy. My understanding is this means there is something wrong in my spinal cord, probably in my neck. There are a bunch of things that fall under this category. I was not really given a treatment plan. I was told the numbness in my hands and arms is probably residual from my "episode" I had in August and  it may never go away. I was told another "episode" would be an indicator that I might have MS. But I could never have another one. 

And that is that. Not much to do, just try to manage the pain in my hands and wait to see if my whole body blows up again. Not super encouraging.

A lot of thoughts have gone through my head. Everything from, "Thank goodness, we are at the end of this investigative process" to "Is my body going to blow up again in a few weeks?" to "What does this really mean for me" to "How can I live the rest of my life with these issues and never really having something to do about it?"

I walked into the nurse's office at school after my appointment yesterday. She had written on a small sticky note on her wall, "Emmanuel... God with us." It was so simple. Just a few words on a sticky note that had been quickly scribbled down.

At this time of year we sing songs that we have sung for years. O Holy Night. Joy to the World. O Come, O Come Emmanuel. Yet we often don't stop and let the words really resonate in our souls, due to their familiarity. Think on these words... a thrill of hope. and wonders of His love. disperse thou gloomy clouds of night. Those familiar words can hold such power when we stop and think about them.

I grew up singing many songs that had the words "Emmanuel, God with us" in the lyrics. But when I saw it written down on that simple sticky note, it hit me hard. The name that was given to Jesus was "God with us". God walking with us. God sharing our pain. God WITH us. He does not leave us to walk these paths on our own. 

 

God is not healing me right now, and the possibility of living with so much limited use of my hands, vision issues, horrid pain, memory problems and incredible fatigue, not to mention the possibility still of one day waking up being numb from neck to toe again scares me. I am still trying not to think about it much, and still process (a shed some tears) when I do think about it. Yet I know God still has so much for me to do, and He is Emmanuel, God with us, and I hope that through it all I can prove the wonders of His love.

God box

My beautiful friend gave me an amazing gift for my birthday.

It is a box. And it made me cry when I got it.

It came with a book called The God Box, but I knew before I even saw the book what the box was. I helped my friend pick one out for her husband the day before their wedding. She has told me much about these boxes she has. This box is a place to put all my hopes, fears, worries, gratitude. It is a place to put all my prayers.

I was so excited when I got it. There is so muc going on right now that I could probably fill it in one night if I wrote down everything, But I had not used it yet. Every time I started to open it, a wave of fear came over me.

One of the stipulations of the God box is that once something goes in, it cannot come out. When you put it in, you are giving it to God to take care of. And there is a lot in my life right now that I just am not sure that I can really give all to God. I don't feel like I can trust Him to take care of it... I need to hold on to it.

There have been so much of this journey that I have trusted God wholeheartedly. When all my back problems started, and even at the beginning of these new trials I have gone through, I started very sure that "He's always been faithful, I trust that God will take care of this too."

But with every new test that is scheduled and no results come from it, with every new question that comes up from the lack of results, and with every "you need more surgery" (Husband this week), I have felt a little bit of that trust that I felt and a whole lot of hope seep away. And with every bit of hope and trust that I felt go away, I feel like God is farther and farther away from me.

Why would I put something in a box as a prayer to God when he keeps saying, "no" or "wait now" to every prayer that is whispered at night, that is sung every morning as I drive, that is said through sobs. Why would I symbolically put it in the box when I don't trust God to really take care of it? When I am so angry at Him for not taking care of me?

I was walking the dog tonight, which is often my time to really clear my head. My music was playing,  and Audrey Assad's Show Me song came on. The song chorus says:

Bind up these broken bone

Mercy bend and breathe me back to life

But not before you show me how to die

As I was walking, I thought, "How much more, God, do I need to be shown how to die before your mercy breathes over me?"

Apparently, a lot, if I cannot even surrender writing down a simple prayer to go in a box.

It is about surrender. And not just one moment of surrender and then all is better. Surrendering constantly. Every moment. I will probably have to write the same prayer to go in the box multiple times. I can be ok with that. I want to be able to "follow the rules" and make that one paper prayer the last time I worry about that issue. But that will not be how it is for me right now. Surrender will be a daily thing... An hourly thing... A minute by minute thing. And I think that is okay.

The end of the song says:

So let me go like a leaf upon the water

Let me brave the wild current flowing to the sea

And I will disappear into a deeper beauty

But for now just stay with me,

God, for now, just stay with me

There is a prayer in the box right now. A simple prayer of surrendering. Not even a big request like total healing of my broken body. Just a prayer for hope. But a big surrender. Surrendering my despair and trusting for hope. And for now God, before you let me disappear into a deeper beauty, as you reveal your hope to me, just stay with me. For now just stay with me.

All to thee, my blessed Savior, I surrender all

Though sorrows like sea billows roll

Hope has been very hard to come by these days. My health just seems to be deteriorating more and more, and we struggle with the doctors office to get information, and they don't even really have that much information to give. My issues are not only affecting my hands and arms and giving me horrible problems with fatigue, but I am again experiencing intense squeezing my torso, and I have started having vision problems, especially when the fatigue really hits. The doctors cannot figure out what is wrong with me. There is just test after test, waiting after waiting, lack of results after lack of results. I am hoping to have a test this week that will look at the myelin in my nerves and how it is functioning in my body. (Insurance has approved it, but the doctors office won't call me to set it up. Yet another stress headache of this whole situation) If this doesn't show anything, or even if it does, they might send me to the multiple sclerosis clinic in Denver to have a more in-depth work up done to try and determine if in fact it is MS.

With all this going on, I feel as though the words that people have been using to comfort me have just been hollow. If I hear one more person tell me that God gives the biggest trials to the people that can handle it the most, I might scream. Even at times the words of scripture have felt empty and hollow as I search for something to make it better. Hearing that God's love covers all fear in church last week did Very little to comfort me. I couldn't feel God's love. I can't feel his comfort surrounding me. I keep searching for devotionals or scriptures that really speak to me, and I just come up empty. Even music that once brought me to tears at the awe of how God loves and works in my life isn't hitting me with the same realizations and truth that it once did. I just cannot find something to bring me hope.

I don't say all of this to make you feel bad for me or for someone to try and call me up and explain to me how God really does love me with words that they think will be new and encouraging. I say this to share my weakness, my vulnerability, my admission to sin of not trusting God. And today, that sin was really brought forth to light in the sermon that Husband preached at church today.

²⁴ The boat was in the water, some distance from land, buffeted and pushed around by waves and wind. ²⁵ Deep in the night, when He had concluded His prayers, Jesus walked out on the water to His disciples in their boat. ²⁶ The disciples saw a figure moving toward them and were terrified.

Disciple: It’s a ghost!

Another Disciple: A ghost? What will we do?

Jesus: ²⁷ Be still. It is I. You have nothing to fear.

Peter: ²⁸ Lord, if it is really You, then command me to meet You on the water.

Jesus: ²⁹ Indeed, come.

Peter stepped out of the boat onto the water and began walking toward Jesus. ³⁰ But when he remembered how strong the wind was, his courage caught in his throat and he began to sink.

Peter: Master, save me!

³¹ Immediately Jesus reached for Peter and caught him.

Jesus: O you of little faith. Why did you doubt and dance back and forth between following Me and heeding fear?

³² Then Jesus and Peter climbed in the boat together, and the wind became still. ³³ And the disciples worshiped Him.

-Matthew 14:22-32

I feel like I've been trying to jump out of the boat on my own and walk on the water. But I feel like I'm sinking. Sinking fast and sinking hard. I feel like there is nothing that is going to bring me back up. If you look at the scripture, Peter was doing great when he had his eyes focused on Jesus. He was confident as he stepped out of that boat. But then it says he remembered how strong the wind and waves were around him. He let go of the truth of Christ and instead let his own fears of his circumstances be what he focused on. I, like Peter, am looking at the wind and waves all around me instead of fixing my eyes on the hope that Christ truly does bring. I am looking for things that speak to me, instead of letting the people around me and the scripture that I read speak its truth. 

The words that really hit me hard as I read this scripture in church this morning, was when Jesus says, "oh you of little faith." He is talking to me right there: "O Sarah of little faith. Stop looking at the waves of pain around you. Stop worrying about the winds of the doctors office not calling you back. Stop letting the uncertainty of the ocean surface prohibit you from trusting me. Stop doubting that I am there, and rest in the fact that I care for you. I called you out of this boat, and I am here to walk alongside of you."

Things may never get truly better for me, especially if it really is multiple sclerosis that we are looking at facing, or maybe something even worse. I know there will be many more days where the words, "Oh ye of little faith" are the words I will earn for the day. There will be many more times where I focus on the waves and the noise of my life instead of starting each day grasping Jesus' hand to walk steadily through the storm.  But, when sorrows like sea billows roll, I hope that someday I will be able to say, whatever my lot, you have taught me to say it is well with my soul. I am definitely not there yet, but this week, instead of searching for words and scriptures with my own agenda of finding hope, I will quiet my heart and listen to the words that He is speaking to me. I will step out of the boat He has called me from and trust in the hope He gives.

You liberate me from my own noise and my own chaos

From the chains of a lesser law You set me free

In the silence of the heart You speak

In the silence of the heart You speak

and it is there that I will know You 

and You will know me

in the silence of the heart

You speak, You speak.

-Audrey Assad

Joy in the Pit of Despair

This weekend has been a rough one on my health. I have just felt icky all weekend. My hands hurt like crazy. My squeezing in my ribs hurts a lot today. I have started getting horrid, sharp nerve pain in my legs again. I am struggling like crazy with fatigue and memory problems. I woke up this morning for the first time in awhile with the first thought that entereed my mind being, "I am so stinking tired of all this pain... I just want it to REALLY stop."

Through my back problems, playing music was such an outlet. I would process through a lot of stuff by closing the door to the study and just play the piano and guitar for hours, worshipping, reminding myself of all the promises God has given me. However, with the issues I have now with my hands, playing the piano hurts and it is very unsuccessful many times. I can't use my pinky and can barely use my ring finger. So I am playing with three fingers. My fingers physically will not go some places on the guitar. The pick slips and I can't feel it slipping, and it starts sounding weird, and I realize it has turned all the way around. I have no sense of where my fingers are unless I am looking at them, and I think, "woah! The sounds way off!" and I look down and realize my hand is 2 frets higher than it should be.

This weekend I was working on a song called, "He's Always Been Faithful" by Sara Groves. The words to one of the verses said,

 

Morning by morning I wake up to find
The power and comfort of God’s hand in mine
Season by season I watch Him, amazed
In awe of the mystery of His perfect ways
All I have need of, His hand will provide
He’s always been faithful to me.
 

I felt it was super ironic to sing these words as I was struggling so to play the notes. This one outlet I had in my life to really feel close to God, to bask in his presence, to internalize His word and His promises is feeling like it is being stripped from me. I don't feel like whatever this is that is stripping my hands of the ability to play music is a "perfect way." I don't really feel like God is being faithful to me in feeling like I can't worship anymore.

The song goes on,

 

This is my anthem, this is my song
The theme of the stories I’ve heard for so long
God has been faithful, He will be again
His loving compassion, it knows no end
All I have need of, His hand will provide

He’s always been faithful to me.

The Bible is full of God's examples of His faithfulness to people after many struggles. Mary. Hagar. Sarah. Job. David. Abraham. Joseph. The list goes on and on.

Yet, today I am really trying to rest in the words of Paul. Paul didn't really ever just have his life just fall in to place like some of these people. He was in and out of prison. He had some sort of "thorn" he dealt with that he kept askingGod to take it away, but it seemed God never did:

⁷ To keep me grounded and stop me from becoming too high and mighty due to the extraordinary character of these revelations, I was given a thorn in the flesh—a nagging nuisance of Satan, a messenger to plague me! ⁸ I begged the Lord three times to liberate me from its anguish; ⁹ and finally He said to me, “My grace is enough to cover and sustain you. My power is made perfect in weakness.” So ask me about my thorn, inquire about my weaknesses, and I will gladly go on and on—I would rather stake my claim in these and have the power of the Anointed One at home within me. ¹⁰ I am at peace and even take pleasure in any weaknesses, insults, hardships, persecutions, and afflictions for the sake of the Anointed because when I am at my weakest, He makes me strong.

- 2 Corinthians 12:7-10

However, Paul wrote some of the most joyful passages in the Bible:

¹⁸ Now I’m sure of this: the sufferings we endure now are not even worth comparing to the glory that is coming and will be revealed in us.  - Romans 8:18

 

 ²⁸ We are confident that God is able to orchestrate everything to work toward something good and beautiful when we love Him and accept His invitation to live according to His plan.  - Romans 8:28

 

³⁸ For I have every confidence that nothing—not death, life, heavenly messengers, dark spirits, the present, the future, spiritual powers, ³⁹ height, depth, nor any created thing—can come between us and the love of God revealed in the Anointed, Jesus our Lord. - Romans 8:38-39

 

³² Instead, think back to the days after you were first enlightened and understood who Jesus was: when you endured all sorts of suffering in the name of the Lord, ³³ when people held you up for public scorn and ridicule, or when they abused your partners and companions in the faith.  ³⁵ Remember this, and do not abandon your confidence, which will lead to rich rewards. ³⁶ Simply endure, for when you have done as God requires of you, you will receive the promise. - Hebrews 10:32-33, 35-36

 

 ¹² Do not forget to rejoice, for hope is always just around the corner. Hold up through the hard times that are coming, and devote yourselves to prayer. - Romans 12:12

and of course, the most famous passage on joy:

 

⁴ Most of all, friends, always rejoice in the Lord! I never tire of saying it: Rejoice! ⁵ Keep your gentle nature so that all people will know what it looks like to walk in His footsteps. The Lord is ever present with us. ⁶ Don’t be anxious about things; instead, pray. Pray about everything. He longs to hear your requests, so talk to God about your needs and be thankful for what has come. ⁷ And know that the peace of God (a peace that is beyond any and all of our human understanding) will stand watch over your hearts and minds in Jesus, the Anointed One. - Philippians 4:4-7

The whole book of Philippians was thought to be written while Paul was in prison. And not the prisons like we have today... but where he may have been sitting down in a deep hole in the ground, chained to a wall, with no light or windows. Paul was really in the Pit of Despair. I think to the Princess Bride scene where Wesley finds himself in the Pit of Despair. There is no hope of escape, and all that he will know there is torture.

Yet, he did not let the Pit of Despair bring his spirits into the Pit of Despair. He still rejoiced in God's goodness. He knew that God was faithful even when his circumstances suggested otherwise. He knew the promises that God had for him and he trusted that God would provide all He needed.

Buttercup's love gets Wesley through his pit of despair in the Princess Bride. It even gives him the opportunity to only be "mostly dead" instead of losing all hope of life.

True love. This is what revives Wesley. He goes from mostly dead to full of life (even if he has to be carried the whole way in and out of the castle). God's true love revives Paul's spirits while He is in the Pit of Despair, and gives him life and joy again.

I hate that I can't play music right now. I hate that even writing this blog has been super painful on my hands. I hate that I feel like my ways of worship and reflection seem to be taken away from me. I unfortunately don't have a magic pill with a chocolate coating to make it go down easier that will transform my spirits magically to joy. But as the days go by, I hope that I can look to the way Paul approached his life in the Pit, knowing that God would set his feet upon the Rock, and he would have joy. And rest in God's true love to bring me life again, in whatever form that is.

 

Have fun storming the (joy) castle! Think it'll work? It will take a miracle!

 

²² How enduring is God’s loyal love;
the Eternal has inexhaustible compassion.
²³ Here they are, every morning, new!
Your faithfulness, God, is as broad as the day.
²⁴ Have courage, for the Eternal is all that I will need. My soul boasts, “Hope in God; just wait.”

 - Lamentations 3:22-2

A reminder of hope

Yesterday a dear friend of mine from Missouri sent me flowers. I got home, and there was a box from 1800Flowers on my doorstep. I opened the box to beautiful lily buds. Almost none of them had bloomed yet, but I put them in the water and a vase.

When I came down this morning, a lot of the buds had started opening and blooming in beautiful colors.

When I sent my friend a thank you last night, she was disappointed in the fact that the flowers were not in bloom yet. Yet, this morning when I woke up, the blooms over the time passing was such a reminder of hope to me. Sometimes, we finish our day defeated, in pain, struggling with fatigue and sorrow. Yet, we need to remember the hope that a new day brings. Hope of fresh starts. Hope from the promise that God's mercies are new every morning. Hope that one day, we may wake up with colors more beautiful than we could ever imagine filling our lives with beauty.

Thank you dear friend, for the flowers, but also for my reminder to stay hopeful. While I may be in a time right now of waiting and sorrow, I know that soon my flower will bloom and again bring beauty and color from the pain of today.

2 Jesus leads us into a place of radical grace where we are able to celebrate the hope of experiencing God’s glory. 3And that’s not all. We also celebrate in seasons of suffering because we know that when we suffer we develop endurance, 4which shapes our characters. When our characters are refined, we learn what it means to hope and anticipate God’s goodness. 5And hope will never fail to satisfy our deepest need because the Holy Spirit that was given to us has flooded our hearts with God’s love.

Romans 5:2-5

And I wait.

Patience is not one of my finer virtues. I have gotten a little better over the years, but overall, I don't wait well for things. I get impatient easily with people who take too long, I get frustrated when I can't get something I want right away, I make quick decisions and act on them... whether they are super great decisions or not.

I had a pastor who every week during the pastoral prayer would pray for "those who were waiting for medical tests." I thought every week that that was a nice prayer, but kind of thought it was silly to pray for it every week. I now know, it is not. I have learned a whole new level of impatience in the last week and a half... Waiting for medical tests.

10 days ago I had some pretty serious medical tests. There are some serious things they are looking for that are related to my whole body numbness I have been dealing with. I had blood drawn, a spinal tap and detailed pictures taken of my spine after dye was injected in my spinal fluid. The tests were rotten and horrid. The waiting for results is worse.

They told me about 3-4 days at the hospital... And I did speak with my doctor to hear that my spine looked fine, but the big tests we are still waiting for. So Thursday I got impatient and called to see if they had heard. No call back. So I called yesterday. They had the results! But... The doctor had not gone over them yet, and he was not in, so eve n though the tests are back, I still have to wait through the weekend.

My mind has been going crazy playing the "what-if" game, and there have been lots of tears shed. That is all added to the fact that I feel horrible most of the time due to whatever is going on. I want to get things figured out. I want a treatment plan. I want it to be fixed.

I have prayed all week, "Let the tests come back today, Lord!" Obviously the answer has been no this week. I kept praying, and praying... And yet, I heard no answer.

I did some reading on waiting this morning. Elisabeth Elliot wrote,

“I realized that the deepest spiritual lessons are not learned by His letting us have our way in the end, but by His making us wait, bearing with us in love and patience until we are able to honestly pray what He taught His disciples to pray: thy will be done." –Elisabeth Elliot

I have been begging all week, "Lord, just let me know what is wrong with me!" I have been so distracted all week by this looming over my head. And every moment I am not thinking about it, I am just trying to distract myself with other things: pouring myself into my teaching, immersion into the television, hanging out with family. I have tried to fill my mind with so much noise so I did not have to think about everything. 

What I have not been doing is letting God bear with me in love and patience. I have not been praying "Thy will be done." I have not been being still, and knowing that He is God. I also read in one of my devotion this week, 

Let the dew of my presence refresh your mind and heart. So many, many things vie for your attention in this complex world of instant communication. The world had changed enormously since I first gave the commandment to be still and know I am God. However this timeless truth is essential for the well-being of your soul. As dew refreshes grass and flowers during the stillness of the night, so My Presence revitalizes you as you sit quietly with me. - Jesus Calling by Sarah Young

My soul has been so consumed with worry and noise, I have not allowed room for God to come in and refresh me. Every prayer has either been "woe is me" or "why are you allowing this God?"  and even in a bad moment, "I am so mad at you, God!" as well as "I want to know RIGHT NOW God!" I have not sat and said, "Here I am, Lord. Let me be still and let you wait with me, let You love me, and hold me during this time of uncertainty. Let your will be done as we wait."

I will definitely pray now for those who wait for medical tests, always, and this week i have learned how to pray. Not pray for the outcome, not pray for it to come back soon. But pray that in the waiting, the love and peace that Christ brings is felt in hearts. Pray that in the stillness of the night, God refreshes the spirit of the weary. Pray that God's will be done is the prayer spoken and felt.

So, I wait. I wait with God's love over me. I wait with God's strength as my foundation. I wait with my hope not in the results, but in God alone. I will wait in the arms of my God, who knows suffering himself.

My soul quietly waits for the True God alone, because I hope only in Him. He alone is my rock and deliverance, my citadel on a high hill; I will not be shaken. Have faith in Him in all circumstances, dear people. Open up your heart to Him; the True God shelters us in His arms. - Psalm 62:5-6, 8

Amen.

A little humor...

Sarah Lillie's Top 10 Reasons You Might Be a Medical Junkie

10. You send birthday and Christmas cards to the receptionist at your surgeon's office

9. You have a song you wrote that goes to the on-hold music at your doctor's office phone 

8. When you get taken back to your exam room, you think, "Hey, this isn't my regular room!"

7. When a new issue pops up, you have no idea which of your 5 doctors offices to call first.

6. But you don't have to look up any of those numbers because you have them all memorized.

5. When someone answers the phone at your doctor's office and they don't identify themselves, you know which receptionist you are talking to and ask them about their kid/dog/husband/lunch that day.

4. You have to explain your past medical procedures to your doctor examining you, as they are not sure what it is.

3. You can tell the nurse, "no, this vein doesn't give much, but this one in my left hand is good, but careful when you pull the needle out as I am a bleeder."

2. You find the rhythm of an MRI soothing, and you wrote a song called MRI Lullaby that you sing while you are in one... And you are thankful when the most complicated test ordered is "just an MRI".

1. In the middle of the night, you don't need to turn on your light to figure out which medicine bottle you need... You can just shake and know your pills "by sound."

If you can't laugh...

The prayers of the people

Things with my health are not good. The numbness I had experienced from a few weeks ago has now spread through most of my body. We are seeing a neurologist and they are working on performing tests (including a spinal tap) to try and diagnose what is going on. Some very scary suggestions have been given to what is going on. We are in a waiting game to get this all figured out, and frankly, it is terrifying.

In this process, I have had many people comment on how good my attitude is through all this. I do also feel a very deep sense of peace at many points of my day. I am not saying that I am perfect... I have had many times too of complete break down and many tears have been shed. But overall, I have had an okay attitude overall.

I am CONFIDENT this is not of my own doing.

I think back to the story of Esther. Esther had become queen in Persia and had received some terrifying news. News that the King was planning to kill all of her people. Her uncle told her what was happening and begged her to go to the King to stop the murder of all the Jews.

Mordecai: ¹³ Tell Esther, “Don’t be fooled. Just because you are living inside the king’s palace doesn’t mean that you out of all of the Jews will escape the carnage. You must go before your king. ¹⁴ If you stay silent during this time, deliverance for the Jews will come from somewhere, but you, my child, and all of your father’s family will die. And who knows? Perhaps you have been made queen for such a time as this.” -Esther 4:13-14

Esther was very scared to go to the King. If to we're not invited to go see the King, and you decided that you would like to speak to him, and you just showed up, you could be killed! It wasn't allowed. Only if the King found favor with you, and extended his golden scepter to you, would you life be spared. Esther knew this, and knew that one of the King's previous Queens had been killed for something arbitrary (which was what led to her becoming queen). She was terrified to try and go see the queen to convince him to not kill her and her people. But the words from Uncle, "Perhaps you have been made queen for such a time as this," encouraged her that this was what God's will was for her. So she sent these words to her uncle:

Esther: Tell Mordecai, ¹⁶ “In preparation for my audience with the king, do this: gather together all the Jews in Susa, and fast and pray for me. Intercede for me. For three days and nights, abstain from all food and drink. My maids and I will join you in this time. And after the three days, I will go in to the king and plead my people’s case, even though it means breaking the law. And if I die, then I die!”

¹⁷ Mordecai left the king’s gate and put all of Esther’s instructions into action.

The entire community of Jews surrounded Esther in prayer. They fasted for this task she was going to complete. The whole of Esther's people covered her in prayers. Prayers for strength. Prayers for courage. Prayers for the King to show His mercy. They came together and uplifted her to the greatest King.

Over the last few weeks, Bryson and I have also been lifted up and covered in the prayers of "our people." I know many people, near and far, have been praying for peace, for strength, for healing, for endurance, for insurance to quickly approve tests, for doctors to have wisdom to figure out what is going on... For many other things that I am sure I do not know about. I am positive that these prayers are what is getting me through with my "great attitude" that everyone is seeing in me. I am sure that these prayers are what are getting me out of bed every morning and not just pulling the covers up over my head and giving up.

God has not answered the prayers for complete healing yet. If some of the things that are being proposed are true, there probably won't be a complete healing that happens. Maybe there will be if it is some of the "lesser" things they think it might be (which are still pretty scary but possibly curable). But God is sustaining me like crazy right now. he is giving me a peace that passes all my understanding. He is giving me strength to make it through my days at work.

After Esther spent three days in prayer with her people, she went to the King's inner court.

5 When the third day arrived, Esther put on her royal robes and stood in the inner court of the palace across from the king’s rooms. The king was sitting on his throne facing the palace entrance. ² He was pleased when he noticed Queen Esther waiting in the court. He extended his gold scepter with his hand, inviting her in. Esther walked toward him, and when she was close enough, she reached out and touched the king’s scepter.

The prayers of Esther and her people spared her life with the king. The story continues that Esther finally does ask the king to spare her people, and he grants her request (as well as executing the man who was responsible for the plot to kill the Jews). Today, there is a festival, Purim, that is celebrated through gifts of food and drink, charity to the poor, and a celebratory meal, to commemorate the way God provided for the Jews and the way God worked through Esther, who was made queen "for such a time as this".

I don't know why I have taken ill as I have. I know that maybe it will someday be made apparent, that I went through all of this medical trial for "such a time as this." Perhaps it is for people to see the way God's prayers have worked through me to show a "great attitude" while I am also scared out of my mind. Perhaps it is for some other reason that I have no idea of yet. However, I am so thankful for the prayers of my people. The prayers that are keeping me going. The prayers that are sustaining me. The prayers that are reminding me of God's faithfulness and sovereignty during this time.

Thank you for your prayers... And keep them coming.

In your everlasting arms

All the pieces of my life

From beginning to the end

I can trust you

In your never failing love

You work everything for good

God whatever comes my way

I will trust you

Hello Lord?

I woke up Monday morning, and my feet were numb. They were tingly and I didn't have much sensation in them. I thought it was weird, but kind of brushed it off.

By night time, the numbness had moved into my groin and bootie. I started getting scared. New numbness could mean something pressing on the nerves in my spine.

By Tuesday, the numbness now was in my legs. I got terrified.

All sorts of things went through my imagination. I searched on the internet. All sorts of new things started running away with my imagination. My SCS rep told me in the doctors office later, "You canNOT webMD yourself!" Probably good advice... as I had convinced myself I might have MS.

As all these fears were running through my mind, the P.E. teacher at my school posted on Facebook:

Read in Jeremiah this morning ; "I have loved you with an everlasting love; therefore I have continued my faithfulness to you..." What a great God that in spite of my flaws and follies he will always be faithful. What grace!

I told him thank you for posting, thank you for the reminder. Yet, I did not feel in my soul that God has always been faithful to me. In the face of fear, I did not have confidence that God would be faithful during this new trial.

I listened to a couple songs of Sara Groves on the way to the doctors office. The first song was a reminder of the verse Max had posted earlier that day.

Morning by morning I wake up to find the power and comfort of God's hand in mine. Season by season I watch him amazed, in awe of the mystery of his perfect ways. All I have need of his hand will provide. He's always been faithful to me. - He's Always Been Faithful

I heard the words, and again, I thought, "God, I don't feel very provided for right now. I don't feel like you are being faithful if I have to go through another back surgery." The next song said:

Right now I don't hear so well and I was wondering if you could speak up. I know that you tore the veil so I could sit with you in person and hear what you're saying, but right now, I just can't hear you. I don't doubt your sovereignty, I doubt my own ability to hear what you're saying and to do the right thing, and I desperately want to do the right thing. Somewhere in the back of my mind I think you are telling me to wait, and though patience has never been mine, Lord I will wait to hear from you. - Hello Lord

This one resonated a bit more. I was feeling very abondoned by God's voice today. I could not believe that after a few months of really being somewhat okay with my pain, I was back into a very scary place, where everything seemed to be falling apart again. I couldn't hear God speaking to me. I couldn't feel that it was going to "be okay."

We went to the doctor. They said there is a possibility that my nerves are just inflamed and angry from all the extra activity we did in Chicago. They put me on a steroid to help calm the nerves and reduce inflamation. If that does not work, then there might be something more wrong. There could be scar tissue pressing on the nerves. There could be another disc problem. There could be something else. I might have to have a myelogram again (those are horrid tests) since I can't have an MRI with my implant now.

I am feeling like I am coming out of the "unending shadows of death’s darkness" a little bit, and hoping that the steroids take care of it. But I am still a little scared that it won't be "that easy." It never seems to be that easy for me.

I am still having a hard time today feeling the words "He's always been faithful to me" really feel like truth. However, I find the more I tell myself, "He's always been faithful... He's always been faithful... He will never leave or forsake me (Deut 31:8)... There is nothing that can separate us from the love of God in Christ Jesus (Rom. 8:38-39)... The Lord will be with us wherever we go (Josh. 1:9)... The Lord is my strength and my defense (Is. 12:2)..." the more I believe it (and the more I am thankful for my years in AWANA).

God has spoken through these verses to me. He spoke through the 30+ people who have posted on my Facebook wall that they are praying for me. He has spoken through the ways his grace and love has carried me through in the past.

I am still scared. I am still feeling a little doubtful right now of God's faithfulness. However, God is speaking to me. I may not be hearing so well right now, but I know He is there. I know He is speaking. I know He allows me to sit with him. He is telling me to wait right now. To trust. It might not "be okay." But I am trying to remember that yes, God has always been faithful to me.

Keep speaking to me, Lord. I am trying to listen.

Morning by morning new mercies I see...

I have a beautiful, amazing friend, who for the purpose of this blog, I am going to name Grace. I chose this "fake name" on purpose. My friend "Grace" is full of grace. She is the kindest, most caring, selfless person I have ever met. She gives grace and love to everyone around her. She is one of the most beautiful people I have ever known.

Grace has a lot of health problems herself. She struggles with chronic pain and chronic conditions every day. Yet, her and her husband wanted to have a child. They struggled with becoming pregnant. There were a lot of things that pointed to her not being able to have children. But God gave her the gift of a little life inside her. But, then they found out there were a lot of complications. The baby was growing strong, but due to some mechanics of the pregnancy, she was super high risk. Grace would have to go on bedrest at about 30 weeks. Emergency C-Section at 35 or 36 weeks. This condition was very, very rare, and all the medical journals said that it never changes.

The medical journals did not realize that we have God on our side.

God gave Grace, her husband and her little miracle man another miracle. The situation changed. It was not supposed to change. Everyone said it wouldn't. In this rare, rare sitation, the change is even more rare. God's mercies and grace poured over Grace and her beautiful family.

I have another friend who I will call Hope. She had a surgery to correct her back pain about 3 years ago. Unfortuantely, her fusion cause her spine to be fused in an awkward position, that now has left her in more pain and she has had to go on permanent disability. Hope struggles to complete daily tasks like showering and putting on makeup. She has what she calls a "three-day week." If she schedules more than about 3 activities in a week, she is unable to function for days at a time due to pain flare-ups. She is currently writing a book about being in pain all the time. This week, she posted, saying, "Writing about being in pain and transitioning from able-bodied to disabled is making me sad." Hope often feels like there is little hope in her life for a miracle.

So why does Grace get a MIRACLE, and Hope is still waiting for hers?

Here is the answer: I do not know.

I don't know why Hope and I are still not healed. I do not know why Grace recieved grace from God for her and her beautiful boy. But, I think that everyone of us can cry for joy at the miracle that Grace has recieved.

I often feel some of the same discouragement I know Hope feels. My mom often tells me that she has faith that I will one day be healed. I have said often, that is it easier for me to accept the fact that I am injured and in pain, and learn to live life as my new normal of being in pain often. My mom still has hope for me. On many occasions, both Hope and Grace have expressed their hope for my life. And I have hope for Hope. And I had hope for Grace when she felt very hopeless before she recieved her news of change this week.

It is so easy to hope for others, yet so hard to hope for ourselves. We see ourselves in a very small box of what life is. We are confined by the chains of our situations, and unable to see past them. Yet others often see past our limited view and express their hope for us when we cannot.

C.S. Lewis said, "Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see." There are ways that God works around us all day every day. Some of them are big ways that are easy for us to see, like Grace's miracle. Some of them are too big for us to see, that we may take for granted every day. Sometimes though, we wait for a miracle of healing, of freedom, and change; and we wait... and wait... and one doesn't come. A child gets cancer. A woman loses a child to miscarriage. An innocent man is locked up in prison for a crime he did not commit.

Adam Hamilton writes about miracles in his book Why? Making Sense of God's Will. He writes that,of course, God can do miracles. But miracles are miracles because they are rare. They don't happen every day. God works through us every day, but miracles don't come all the time. Hamilton writes, "God's primary way of working in our world is to influence us and others - giving us peace and strength, wisdome and patience - while using the natural means God created to accomplish God's purposes."

I told Hope this week, "You may not be able-bodied in every way that you used to be, but you are so much more able-spirited because of what you have gone through. Your life and testimony are an inspiration to so many people. It probably isn't the testimony you wish you could share, but you have encouraged me so much, and I hope you are able to see that purpose of your pain. It is not easy to live the calling to which you have been called, but you are amazing for answering that call every day with your encouragement and life story that you share with everyone." The way God works in her life right now is that God sustains her., and gives her life a purpose. That she is able to encourage and share her story to everyone around her. They see that she is a woman full of grace and love, and are encouraged through her struggles that God will provide for them too. Just like the song says,

Morning by morning new mercies I see! All I have needed Thy hand hath provided. Great is Thy faithfulness, Lord unto me.

When Grace told me of her miracle today, I wept tears of incredible joy. I wanted to shout and scream at the hope that is placed in my life. I wanted to share that hope and joy with everyone around me, and it wasn't even "my miracle." Grace still has a long road ahead of her that is scary and might be full of other parts that she can't see past.

Yet, I pray that in our times of darkness, of captivity, of being unable to see past the situations we find ourselves in, we are able to look at our circumstances and see the miracles written all over the pages of our lives and the lives around us. And through those miracles, see the hope that surrounds all of us during those times. There will be sorrow. There will be tears of sadness. We may never get our big miracle that we were hoping for... and I still don't know why. But I know that in our weakness, God uses his strength to work in our lives. He will not abondon us, and will use others to help foster the hope in our lives.

With "strength for today and bright hope for tomorrow", I pray hope and grace and peace for you.

I'll Cover You...

But sweet kisses I've got to spare

I'll be there and I'll cover you

I've longed to discover something as true as this is...

I have often been the patient. But this week I am the care giver. I joking posted today, "if we have no other strength in our marriage, at least we have the in sickness covered. Someday I look forward to seeing what and in health is like." A few weeks ago I blogged about the role reversal of my husband and I with his knee injury (see my post on role reversals here). This post is not so much about a role reversal as it is the actual surgery day, and what it is like to be the watcher, not the patient on surgery day.

When we went into the hospital, I helped husband fill out forms. I went to the business office and worked on the payment aspects before surgery. I listened super closely to the doctor to make sure I knew exactly what the surgery would entail. But what shocked me the most about being on the other side of the surgery was the worry. When I walked in after Husband had been prepped, it shocked me how much seeing him in his hospital gown and hair net frightened me.

During my surgeries, I really didn't think much about my attire before the surgery. I spent time in the back without Husband there getting prepped. It was a gradual transformation of going from person to patient. And I was so focused on "what is this going to be like" opposed to "what do I look like?"

When they took Husband back, I waited for about 20 minutes before I went back. Then when I got back there, it was a shock to me at the transformation to being a patient. It was a reality. I was about to give my love over to the hands of the doctors. And that was super scary. Part of the fear had to do with we didn't know what the surgery would be. Would it be arthroscopic or would they have to cut all the way? Was the recovery going to be sort of easy or very difficult?  The hospital attire put so much fear in my heart. 

But. I didn't want my fears to be transferred to Bryson. Yesterday my job was that of the care giver. To hold hands. To reassure to some extent. To be strong. Husband was scared himself. It was my turn to be the rock. I always thought before my surgeries that Husband probably was not worried. He always seemed so calm. I have since learned that he was just as worried as I... But he didn't want to show it to me. So yesterday I held it together. I prayed. I helped with medical information. I held it together.

Well, almost. I did tear up a little when I was kissing him goodbye as he went in the operating room. That was so hard... To watch the man that is my best friend, my whole world, be wheeled away where I couldn't be and couldn't help, and where he would be the most helpless. But I am sure no one would have wanted my help in that OR anyway.

Then I went and waited.

And waited.

I was thankful for my crochet as I waited.

I always slept through the waiting part. Not yesterday! I got to be the one wondering how it was going. Wondering if he was doing ok with the anesthesia. Scared that "something" might happen. Every time the door opened where the doctors came out, I turned hoping it was Husband's surgeon.

When the waiting was over, task mode came in. How to care for Husband. How much to ice. How to operate a new machine to help with his healing. What to watch for in case a complication arose. How to get him in the car and on the couch.

It has been a huge eye opener to see what it is like to be the person who is the support system in the surgery process.

My absolute favorite musical is Rent. In this show, one of the characters is a caregiver in the end of life for his boyfriend who is dying of AIDS. They sing a very cute song together in the first act called "I'll Cover You."

Just slip me on

I'll be your blanket

Whenever, whatever I'll be your coat

Collins reprises this song after his lover dies. It is one of my favorite moments in all of Broadway. It is the song of giving of ones self to the other person. When you're cold and you're lonely. It is a song of searching for something more to do when the other person is hurting, but you know there is not much more you can physically do to help. When your heart has expired. It is the song of a care giver. When your worn out and tired. 

I am still having my eyes opened all the time to what it is like to be on the other side of surgery time. But my darling, I'll Cover You. And I have lots of kisses to spare, when you are worn out and tired, when you are cold and you're lonely. I'll Cover You.

The science....

This was an article in the Denver Post today regarding SCS and specifically the doctor who did my procedure. Very interesting...

Spinal pacemakers help block pain

Care giving

He steps up to the plate. He eyes the pitcher. He looks into right field where he wants to aim the ball. The pitch comes. He angles down to hit the ball. Great connection... Great hit...

   

This is what I see as Husband is playing softball. I watch the ball fly, and i get excited that he might get a good base hit, but then I hear a scream. I look down and Husband is rolling in the dirt grabbing his leg and screaming. Fear grips my heart as I run to the field. I think he might have hit himself with the bat. But he says his knee buckled, and is not in the right place. So I run to the car as some guys help him hobble off the field. I bring the car through the gate and he gets in the back seat... In agonizing pain. I drive safely but quickly to the ER.

3 hours in the ER. Dislocated knee. Possible ligament tear. A bone chip floating in his knee.

When they finally are about to discharge us, my tears come from fear held in and worry and love for Husband.

When we get back to my parents' house, I help him get undressed. I help him step into the shower. I help him reach behind him to get the shampoo. I dry him off. I get his knee brace back fastened, and get the water for his meds. He looks at me and asks, "How did you do this three times, after three surgeries?" I just shrug my shoulders, but in my mind I am thinking the same thing, "how did you handle caring for me so closely and doing everything for me after three surgeries, and every time I have a bad pain day?"

The last few days have been an eye opener for both of us. Husband has been needing lots of help with small tasks, and I am the care giver. Care giving is a lot of physical labor, which at times has been hard for my body with my pain problems. And some things needed to be done today. With the end of school and meetings every night this week for Husband, housework fell behind. Husband always does food shopping and cleaning on Fridays. It fell to me this week. The dishes in the sink were awful... They had to be washed (it was getting to where health service might need to come in...) Laundry needed to be folded and put away, unless we were going to wear that pair of underpants a third time (kidding...) The lawn needed to be mowed (don't worry I did not do this one... Hoping for the neighborhood boys to come by again soon...). Wow... He does so much of the labor I have a hard time doing. As I am lying here with my stim cranked and considering stealing one of Husband's new good stuff, I am so thankful he works so hard to keep our house running when I can't. 

And then I also get to play the care giver role of "please stop walking up the stairs with laundry in your hand while you have a bum knee" and "you have to elevate it!" And "please let me get your stuff for bedtime under the sink for you, don't do it yourself!" I now know how frustrating it is when your "patient" tries to do things they really shouldn't do. I am pretty sure that even after 2 days, Husband also understands how frustrating it is to NOT be able to do things you want to do and how frustrating it is to sit on the couch all day.

View from the couch...

We have both been given in the last two days a big eye opener into the other's world. Husband is hating side effects of medicines (familiar to me) and I am about to duct tape his butt to the couch (I know he has been there with me!).

 I am so thankful for our teamwork we have and how we support each other so much on a regular basis. For couples dealing with chronic pain, divorce is a common occurrence. Chronic pain is a huge strain on a marriage. And while many people tell us what an amazing couple we are, it is not all roses and rainbows in the way chronic pain affects our marriage. We have times where it is super hard for us. Husband is super supportive of my needs with assistance on things like grocery shopping and cleaning the house. But I know it gets to be hard on him, just like it has been for me this weekend. But we try hard to keep communicating and laugh together... And sometimes cry together too.

This was one of the verses at our wedding that our pastor gave his wedding homily on.

A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken. (Ecclesiastes 4:12 NLT)

I am super thankful that even when the times are hard, we got each others backs so we can conquer. I am even more thankful for the presence of God in our marriage... Our triple braided cord will not be easily broken! And, we also have so much support from family and friends. So really, we almost have a quadrupole cord! (But I won't let all our friends and family into that bedroom where I threw all the clean laundry).

Husband's diagnosis is a little scary. He will have MRIs next week and some follow up appointments. Surgery is still a possibility depending on the bone chip and where it came from. But in the orthopedic doctor's office, they took the knee from this

Back to this

 They drained 120cc of blood from the knee. It helped ease the pain and he is on the mend. 

Look ma, no cane!

I am 99% sure this will not be the last time I have to be a care giver for Husband. I know there will probably be more times we get to reverse roles and completely appreciate what the other person goes through on a daily basis. But I am super thankful that we have each other's back and we have a triple cord, no matter what comes our way!