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!

God's love wins

"when pain is to be born, a little courage helps more than much knowledge, a little human sympathy more than much courage, and the least tincture of the love of God more than all.”

― C.S. Lewis, The Problem of Pain

The other night I got to run around with my sweet 21 month old nephew. He is so much fun! We played with the closet door a hide and seek / peek-a-boo game, walked up and down the stairs, ran around the living room, climbed on rocks at Oskar Blues, played in the fountain... It was a hoot! But... I barely lasted an hour with it. Whew... That is a crazy busy boy! He is amazingly sweet and wonderful. But busy!

On the way home I asked Husband, "do you really think we can have kids? What if we get a busy kid like Sweet Nephew?" We talked a little more, and then I said, " Well, I guess we just need to trust that God won't give us more than we can handle."

Pastor Husband laughed a little and said, "yeah, I don't agree with that belief system at all." He didn't mean this to hurt me at all, but he did not realize this was going to send me into a spiral dashed hopes and dreams about being able to handle a pregnancy and care for a child when he said that. I cried a bit. Well... A lot.

But I reflected a lot more on that statement and other like it: God doesn't give us more than we can handle. God must think I am strong because he has given me so much. I told Pastor Husband, "But it is in the Bible!" Then I went to look it up.

I looked...
And looked...
Hmm... Where is it?

I ran across this passage:

The temptations in your life are no different from what others experience. And God is faithful. He will not allow the temptation to be more than you can stand. When you are tempted, he will show you a way out so that you can endure. (1 Corinthians 10:13 NLT)

Tempted? Not quite the same as "what you can handle." This passage is actually related to idol worship. Not about trials in life. I think this is where the saying stems from though.

As I thought about it, God often DOES give us more than we can handle. People suffer horribly. I have been reading about and praying for a little 1 year old in Kansas City with cancer who is going through chemo. The doctors are placing poison in this little girl's body to try and beat out cancer. She is ONE YEARS OLD! That seems like a little more than a little girl can handle, and I cannot even imagine what her parents are going through. This is when "pop gospel" sounds really nice. "God won't give us more than we can handle." "God knows you are so strong, so he gives you these trials." But these sentiments also seem very shallow when you think about pain and sorrow and suffering that is in our world. I am coming around to seeing Pastor Husband's point of view... I guess the thousands of dollars in seminary education were not wasted.

So where is the hope in this situation? Where is the hope for this little girl? For people dealing with serious mental illness? For a young man who is in prison who is innocent, and being kept in on a technicality? For a 28 year old who at times struggles going up the stairs or getting up from a restaurant booth or getting out of a car, or wants to be a mom and is unsure whether her body will be able to handle a rowdy 2 year old... and knowing this will probably be a reality for the next 30... 40... 50... years of her life?

I don't believe that God has predetermined this path of suffering for me. But I hold closer to the view like Adam Hamilton presents in his book, Why. He suggests that God's will is more like a novel that God has outlined for us, but we collaborate with God by how our choices are made in life. So Here is the hope. I trust that God's love wins and will prevail. I choose to walk this path of suffering with God. I choose to let God work through me and my pain. This is the path I have been presented with, so how will I collaborate with God and follow the path to live most deeply into His love and His grace, even in the midst of pain? God's love and grace will not leave me alone.

Motherhood may not be easy for me. If we do decide to try to have kids, It may be very painful to carry and care for a child. There are many more things that will come along in the next 20, 30, 40 years that will be hard for me to physically endure,i am sure.Yet, Psalm 55:22 is comforting.

"Cast your burden on The Lord and He will sustain you."

Sustain. Not fix everything... But the promise there is that He will sustain me. I trust that God will not give me more than His love can sustain me through. I trust that nothing can separate me from His love. I trust that through it all, I can still live fully into God's love and grace. I trust that God's love wins.

And I am thankful too that I can hand off Sweet Nephew to mama and daddy right now. :)

By faith... Mommy Edition

My friends, we are not those who give up hope and so are lost; but we are of the company who live by faith and so are saved. Faith is the assurance of things you have hoped for, the absolute conviction that there are realities you've never seen. - Hebrews 10:39-11:1

I have blogged before about how much I want to be a mommy. We have been unable to pursue having children right now due to my health. I often get very sad when another person i know announces their pregnancy. The last one sent me into a spiral of depression for a good few days. I also get invited to lots of baby showers these days. and i love shopping for them and it is so fun to make little things for these new little ones and i am so happy for the new mommies to be... but it is still super hard and painful to be reminded that i can't have that right now. With Mothers Day coming up this week too, I keep being reminded that I don't get to be part of this club of mothers.

We are hoping to start conversations with the doctors this summer about what a pregnancy might look like for me. Sometimes, I feel hopeful about maybe starting to try for kids in the next few months, but other times I seriously wonder if I am crazy to want to try to have kids. After a day of work, it is all I can do to help the husband clean up dinner (he is so great that he cooks all the time) or do some other small household chore before I just need to get on the couch or in bed or crank the stimulator or take meds. How is that going to work with a pregnant belly? I just fear that it is going to be a bad experience and pregnancy will be very rough on me.

I was very upset awhile ago about this, and came across the verses in Hebrews about faith. Faith is the assurance of things you hoped for. Hope of the conviction that there realities unseen. We are not to give up hope, because of our faith. This was so encouraging. Then I kept reading, and I chuckled a little...

It was by faith that even Sarah was able to have a child, though she was barren and was too old. She believed that God would keep his promise. And so a whole nation came from this one man who was as good as dead—a nation with so many people that, like the stars in the sky and the sand on the seashore, there is no way to count them. (Hebrews 11:11, 12 NLT)

It made me smile that in this time of sadness of not having children, I read about how Sarah, a woman who thought she was never going to be able to have children, and how she had children!

Now the passage goes on to say:

All these people earned a good reputation because of their faith, yet none of them received all that God had promised. For God had something better in mind for us, so that they would not reach perfection without us. (Hebrews 11:39, 40 NLT)

I don't know what God has in store for me and Bryson. I don't know if natural children will be a wise choice for us or not. Yet, I hope that one day, no matter what happens, people can say, "Sarah Lillie... She definitely has faith. She has not had it easy, but wow... She has faith. And look at all God has done in her life!"

I am still loving on my 600 kids at school and giving them lots of my time and energy. I am excited to walk with a group of girls at our school's Girls on the Run program this weekend in Denver. i loved giving the kids an opportunity to sing at the Union Colony Civic Center last week. i love the hugs and smiles i get every day. I have a song that I would love to sing to my own little baby someday, John Denver's "For Baby, For Bobbie." I have a picture book of it at my school. I told my 4th graders how I don't have kids, but that I care for them all kind of like they are my kids, and I thought each one of them was special. I read them the book that I hope to one day read to a little one of mine, but I am so thankful to have 600 kids who I get to love and care for.

So who knows what God has in store for me? But I will try to rest in the faith that God has something great in store for me, and that I can even now, live into the plan that God has for me, with or without my own little one.

I'll be there when youre feeling down
To kiss away the fears if you cry
I'll share with you all the happiness I've found
A reflection of the love in your eyes

And I'll sing you the songs of the rainbow
A whisper of the joy that is mine
And leaves will bow down when you walk by
And morning bells will chime

What's in a name? - Mary Magdalene

 This week at church was woman's Sunday. I was asked to portray the character of Mary Magdalene for the service. I wrote a piece about what it meant to follow Jesus from the eyes of Mary Magdalene. As I researched it a few weeks ago and spoke it today, I realized how profoundly Mary had been healed by Jesus. She had so much hurt and pain, and Jesus took that pain from her, and suffered himself on the cross for her pain.  I saw a lot of myself reflected in this piece, in her sorrow and grief of her pain from her "demons", the way she was scared that she would never truly be healed, her desire to stay with the Lord and trust that he would give her what she needed to continue on. This is my piece for today. I read it, and then sang the song "Alive" while this video played part way through.

Before I knew of hope and light, my filthy hair hung matted against my head. Dark smudges covered my face, perhaps it was mud, perhaps dried blood. My ragged clothes were torn, dirty, putrid. I wore no shoes as I wandered through the town of Magdala. In my eyes, one could only see darkness, a deep darkness with no hope of life. The demons inside caused me to curse the name of the Lord. They filled me with hatred and bitterness, anguish and torment. Horrific nightmares plagued my sleep, and violent, uncontrollable rage filled my waking hours. People called me Mad Mary of Magdala. People say I was a prostitute. People say I was the Sinner with a capitol S that anointed Jesus’ feet. Those things were untrue but I was Mad Mary, tormented by seven demons.

Then I met Jesus, the man who transformed me. He knew me and He knew my hurt. He came to me, Mad Mary, and by the power of his love, he turned my darkness into dawn. I was no longer Mad Mary, I was just Mary.

After my Lord drove the demons and pain out of my body, I could have returned to my home in Magdala. Before I had been Mad Mary, I had had a home, a life there. Yet, I was frightened. How would the people back home react to me? Would they still see me as Mad Mary? And I was afraid that one day Mad Mary would return.  Would I again become Mad Mary when my Savior left? I did not want to leave this man’s side who turned darkness to light. Instead of returning home, I surrendered everything I had once had for this holy man and his ministry.

But one day, men came and took my Lord. Most of His male disciples fled, but my woman friends and I, we stood firm. We did not run. We did not lie about our commitment. For every agonizing hour, we watched him beaten, stripped naked, and nailed to a cross. My Savior who healed my brokenness, now suffered beyond anything I could imagine. We stood nearby through it all silently, watching the Lord we loved breathe his last breath.

My friend’s son took Him from the cross, and placed him in the tomb. We kept a silent vigil as sorrow and grief filled our hearts. Our Lord, who loved us fully, who had given us hope and light and life, was dead. He was dead! He had loved us, in the way only He could love. How could we now live fully without His love? 

Alive - Mary Magdalene by Natalie Grant 

When He spoke my name in the garden that day it was not “Mad Mary.” But my name: Mary. When he spoke my name, he announced my total restoration and transformation. The power of His love conquered the Mad Mary, never to return. His love brought life and light to my eyes. Death has lost and love has won. 

I still see the power of Jesus' love in my life. While I have not physically been restored and transformed, I know that He still speaks my name, Sarah, with love. He has conquered a lot of my fear and sorrow in my pain, and has healed me a lot emotionally from the strain of every day chronic pain. I have experienced physical healing in some ways, and in other ways, I still wait by my Lord's side, waiting, hoping that some day he will fully restore and transform my physical pain. But because of His love I do feel hope and see light and life even in my circumstances of not having full physical healing. Death has lost... fear has lost... sorrow has lost. Love has won.

A Promise for Mrs. Lillie

I was about 8 when I knew I wanted to teach music.

I was about 10 when I knew I wanted to teach elementary music. i had an amazing elementary music teacher.

I was about 19 when I knew I wanted to teach children in poverty.

And I was 28 when thoughts of "can my body handle my profession?" have crossed my mind.

I have often blogged about my job. I am madly in love with it. I love the kids I am teaching every day. I tell people I mostly get to just play all day. We sing, we dance, we play instruments, we have fun. I have had so many kids this year tell me, "Mrs. Lillie, music is so fun!" I work hard to make it fun... So fun they do not know they are learning a huge amount of things about music.

But elementary music is a very physical job. I sit on the floor. I bounce around. I am on my feet most of the day. This is a hard job for someone who deals with constant pain. And I am a crazy music teacher too. I give everything I have to my job. I try my best to give so much love and energy to my kids and my school. I might go a little above and beyond at times (hmm... Almost all school concert at an outside venue in 2 weeks?)

I need to back off. Desperately. But I get so caught up in the love of my job, I forget. Even when my legs are screaming. Even when my back is killing me. I do wonder how much longer I can keep doing this too.

Thinking of quitting my job due to health concerns makes me so sad. Right now, I am going to continue being stubborn and work another year. I will need to alter my work to continue. It is essential I do so to continue.

For the last 20 years, I have identified myself with being a music teacher. It has been a huge part of my identity. I hope I can continue. But, someday much earlier than I ever hoped, I might have to back off. I might have to go part time.

I often get frustrated, and wonder why if God gave me the talents for being a great teacher, why I would have to be consider quitting. Most of use know the verse of Jeremiah 29:

"For I know the plans I have for you," says the Eternal, "plans for peace, not evil,mot,give you a future and hope - never forget that. At that time, you will call out for Me, and I will hear. You will pray, and I will listen." - Jeremiah 29:11-12

These are pretty words. Beautiful words. But... What is the story behind these words? Especially behind Jeremiah 29. Israel has rebelled against God. God said, "you don't need to ally with other nations... Rest in me." Israel says, "uh, we are scared! We need to rest in the alliances of other nations!" God then basically says, "hmm... Try that out. Let's see how it goes."

It does not go well.

The people of Israel are conquered, and taken into exile from their home land. They are taken away from their safety. From everything they know. Taken away from their home. From their identity. God says, "Now is the time for Me to bring hardship on them, so they may be found." (Jeremiah 10:18).

Chapter 29 is Jeremiah's letter of hope to the people. But he also does not sugar coat it. He tells them to "Build houses - make homes for your families because you are not coming back to Judah anytime soon. Plant gardens and eat the food you grow there." (Jer 29:5). But there is still hope of God's promise. A promise that God has not forgotten them. Jeremiah knows that one day God will store His people to the land of promise.

"You will look for me intently, and you will find Me. Yes, I will be found by you." Says the Eternal. "I will restore your fortunes and gather you from all the nations where you've been scattered... I will bring you back to the land that is your rightful home." - Jeremiah 29:13-14

Sometimes I feel like I am in a land of exile... Like I am living in an old lady's body, unable to do the things most 28 year olds take for granted. I am really not sure what God's promise and treasure for my life is. It might be stripping of my music teacher identity, so I can "be found." It might not be. But I am thankful that God's promise for me is that His plans for me are good. And He hears when my tears fall at night, and He hears me call put to Him. I might have to live in this land for awhile, and eat the food here, but I know some how, some way, God has promised that His plans a good.

So today I am still Mrs. Lillie, music teacher. And I will try to live in this land in peace, resting in His promise for me.

Tattoo design

Read about my previous tattoo post here

Today we had an awesome sermon about how God understands us, he loves us and he feels every tear we cry. Jesus came to earth and felt the pain and sorrows of a human, but God the father is one with his son, so God also understands our sorrows. But His love encircles us.

Before I left for church today, I read a devotion by my favorite devotion author, Angie Smith from Mended: Pieces of a Life Made Whole. She was talking about the sparrows, and the verse how God cares for the sparrow, so how much more does he care for us? She was reading about sparrows, and learned:

"This particular bird cannot learn to sing in the daylight because it is always concerned with the chatter around it. Instead, it's cage must be covered so that it is in complete darkness. The , it is able to hear its master and will learn to sing.... And in that place of feeling left alone, unwanted, disregarded, abandoned, He whispered to my weary soul. Sing, love." (Devotion: He Loves You)

So, now, this is my tattoo design. Symbols of God's love wrapped around me, and joining together all the parts of God the Father, God the Son, God the spirit. Symbols of singing in the darkest times (3 birds, 3 surgeries). Symbols of the hope I found through patient endurance.

So, my tattoo design.