Saturday, July 27, 2013

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.

Wednesday, June 5, 2013

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.

Tuesday, June 4, 2013

The science....

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

Saturday, May 25, 2013

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!


Monday, May 13, 2013

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.”

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. :)

Monday, May 6, 2013

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

Sunday, May 5, 2013

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.