Two songs

How I felt starting my day...

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted

But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
As they turn your dream to shame

And still I dream he'll come to me
That we will live the years together
But there are dreams that cannot be
And there are storms we cannot weather

I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed

How I felt trying to stay positive about life later...

There' only Now
There's Only Here
Give in To Love
Or live in Fear
No Other Path
No Other Way
No Day But Today

Oh baby!!!

Well hello,

Little baby.

Your eyes have never seen the sun

You should know now,

Little baby.

That I am the lucky one!

-J.J. Heller, I Get to Be the One

 

I am 28 years old. It feels a little bit weird to think that this year I will be 29. That is almost 30. And 30 is pretty old. Like, really. :) It's like it is time to be an adult and grow up.

 

A ton of my friends right now are getting all good and knocked up (well... I guess it is really "having children" when you are married and starting a family...) and having super precious little babies. Oh, they are so cute! My best friend from college just had her little girl, Nora, this last weekend. I have loved seeing all the precious pictures of her sweet little daughter. I will also soon have a new little niece in July, and I am super excited to shower her with gifts like I have been able to do with my precious nephews that I love more than the world. I love these new sweet lives.

 

For some reason, I have had multiple people ask me in the last week too, "Are you going to have babies?" and "How will the SCS effect your ability to have kids?" Another teacher asked me this in the hall yesterday. I have had a couple of rougher days with nerve pain the last few days. I started crying, and said "Yes, I really want to have kids, and we are hoping to try this summer, but I am really scared about how my body is going to handle a pregnancy."

 

If I hadn't been injured, we probably would have shot out a kid by now. We have been married for almost 5 and a half years. It seems like a good time. We have good jobs, a house to put said child, and great family support around us. But we have had to wait to see if I could get some pain in control so I could carry and care for a child.

 

I imagine that the pregnancy will be rough. There is a lot of conflicting information about how an SCS can be used during pregnancy. There is not any conflicting information about using pain pills during pregnancy (don't do it!). I am still taking about 2-3 pills a day with the SCS on. But it isn't just about the pregnancy. I remember chasing after my precious nephew one afternoon, and being in so much pain just from trying to keep up with him. How is that fair to a little one... and how do they understand "Mommy is hurting, so I can't run with you right now." ? I remember after my SCS surgery, my nephew came in and seemed so confused as to why Auntie Sarah wasn't playing chase and on the floor playing with him. You can't explain that to them.

 

So, lately, I have been sad about my baby. My heart longs for a little one. I want to start a family really badly. We are still hoping that with a team of doctors, it will be possible. We will see this summer....

 

But last night, it really hit home how much I am a mom right now. I work as a teacher for 600 kids at an elementary school. A lot of our kids don't have parents around at home a lot. They come from poverty, and lots of my kids have parents working super hard at minimum wage jobs... or perhaps maybe some other reasons... but parents aren't around much. Last night I stayed at school late and was playing in the gym with a little girl who I can tell has been really needing some extra love lately. I don't know what is going on at home, but I can tell from her behavior with her and her siblings that something lately has not been right. We danced together, and hung out, and I sung with her, and we talked. I went into the office and sang with her brother too in something he was working on for the talent show. Every morning, I have lots of kids who come and give me hugs, who want to say hi, who I can tell really want me to love them. And I do. I love them lots. They are such wonderful kids and I am so lucky I get to care for them for time during the day. I made little prizes for them during our TCAP testing that said "You are such SMARTIES! I know you will do great on TCAP!" I got to show these kiddos how much I believe in them. One of my friends has really been stressing to me in the last few months how Ican be a great school mommy for these kids.

 

So, I don't have a baby with me and Bryson's DNA yet. I don't know how that will work out when I do. I do hope to one day sing this J.J. Heller song to my own little baby. But I have 600 kids at school who need me right now. And I am so blessed to get to care for them and show them what it looks like to have someone who believes in them in their life. And we will continue to enjoy sleeping till 8:30 on Saturdays and spur of the moment dinner dates. I am super blessed.

 

I get to be the one to hold your hand

I get to be the one.

Through birthdays and broken bones

I'll be there to watch you grow

I get to be the one.

ink me!

Tonight I am working on my tattoo that I have wanted to get for the last two years. I kept saying, "Oh, I will get it after THIS surgery, when I am better."

Well, I might never be better. But it is time to do this to symbolize my journey through the last three years.

The tattoo will have the words "Patient Endurance" and "Heb. 10:32" to symbolize my life verse during this time. It will also have three birds to symbolize the three major back surgeries I have had. I am considering a lightening bold to be striking one of the birds to symbolize the electricity from the SCS. (...kidding...) The tattoo will be in the middle of my back, right below the neck line of a shirt.

I write this, knowing that I will have people (ahem... mom... dad... grandma... ) who will be saying "You are doing WHAT?"

But as I have dreamed and designed this tattoo... it is more than a tattoo.

It is war paint in a war I have had with pain for 3 years.

It is a symbol of healing in the trials I have gone through.

It is a sign of God's faithfulness through this time, and his faithfulness that will continue as I continue this journey with pain.

It is a representation of the freedom and flying away from the bondage that pain has had on my life and hope of soaring to a "new normal".

Trying to design and sketch has made me think, as I form each letter, about each step of the journey. From moving boxes. To having physical therapy. To working when I could barely walk. To injections. To people bringing us food. To help in cleaning our house and doing our laundry. To the love and prayers that have gotten me through.

So yes, friends, April 28 I will no longer be allowed to be buried in a Jewish cemetery. But I will have my battle paint to show of what has been and what is to come.

Mourn

My last post was full of such hope.

Tonight, I am feeling mournful of my health.

There are going to be good days and bad days still. Days where the SCS makes me feel great. Days where the SCS almost does it and a little bit of meds makes it better. And days where the SCS and meds are used, and I still don't feel great.

I had someone tell me today, "oh, you will be healed! I know God will make it happen." This injury has really made it apparent to me that God's plan for everyone is not full physical healing. There may be healing in the acceptance of a disability. There may be healing in walking three miles... Even though one used to run 8 miles a day. There may be healing in showing love to others in their times of similar health issues. There may be healing in the mourning of health still not 100%. But I have learned to not tell people that I know they will get better.

So, there will be good times with my health. There will be mourning of my health. And there will be healing. It just might not look what I thought might one day a few years ago.

Pics from surgery

Just documenting a few pictures from surgery and recovery.

Surgery 3 in 13 months. This was right before I started bawling for being scared

Out of surgery and on good drugs

Pretty oxygen mask

I feel yucky now!

There and back again... A goon tale

“There is nothing like looking, if you want to find something. You certainly usually find something, if you look, but it is not always quite the something you were after.” -J.R.R. Tolkien, The Hobbit

Recovery from my SCS surgery is "officially" over. It has been a little over 6 weeks, the time they say it takes for your leads to scar in. I can technically bend, lift, and twist all I want (though I am still not taking lots of chances.) 

I now how some really awesome new surgical body art:

The stimulator is working well overall. I have noticed that when I am standing at my job, my back pain has gone down a lot and I can really control a majority of my nerve pain with the touch of a remote. Today in the middle of first grade music class, my foot started hurting. So robot Mrs. Lillie used her remote and felt better. The kids were fascinated and wanted to see my battery. I told them no, it was under my skin, and we have to wear pants at school, so they couldn't see it.

I have been taking about two pills a day... And one of those days it was only tylenol. There was a time when I was on 5 different prescriptions to allow me to function.

Great is Thy Faithfulness indeed, Lord.

Little known fact about me: I love Lord of the Rings. I would not consider myself a LOTR NERD, but I loved reading the books and every year at Thanksgiving, Bryson and I watch all three extended editions of the movies back to back. Tonight I was browsing through some of my old blog posts from the last almost three years. What a journey this has been. I feel like Frodo a bit. I was given a big journey to endure, with the weight of my task of living life growing heavier day by day. I have had some amazing Merrys and Pippins who have helped me carry this load. My Sam, also known as Bryson has tried to help me try to carry this load and at times carried me up the mountain when I couldn't Make it on my own. Gollum has been next to me in the whispers of doubt and fear. And Gandolf the White, my Lord and hope, has helped protect me. I have been to Mordor and back. And I really hope this was the last trip all the way to the fires of Mount "Major back surgery" Doom. At least for a few years.

There are so many things to be joyful for. Yet I still look at Frodo after he returned home. He still lived with pain and sorrow at the things he had lost. As I said in my last post, I do not know if I will be ever fully healed. I will probably live with pain for the rest of my life. I don't think I am going to hop a ship and go live with the elves now like Frodo did. I am hopeful I will keep learning to live a full life with my new robot status. The journey continues. And this new journey of claiming an electrical life, I am excited to continue.

I look back, and I can't say I am thankful for everything from the last years. It was a hard time. But I am blessed to have learned many things, to have loved many people, to have been loved by many. I am blessed by doctors who truly care and want to see me better. I am blessed by sharing pain experiences with new friends who I have grown to love dearly. And i have been amazingly blessed by a Lord who has walked through this journey and helped to make me new, and make me a beautiful thing out of dust. These experiences were not what I was looking for when we decided to move to an apartment that injured me. I just wanted a house that wasn't as costly to heat. But I have found love and healing. It is not what I was looking for, but I am blessed to have found it.

So now, I continue to walk this journey, taking what I have learned and showing love to others in ways I have been shown love. I look forward to journeying toward maybe being a mommy, toward riding my bike again and swimming, to continuing to buzz with electricity. I pray that you also may journey your path with hope and peace, wherever you may be

Roads go ever ever on,

Over rock and under tree,

By caves where never sun has shone,

By streams that never find the sea;

Over snow by winter sown,

And through the merry flowers of June,

Over grass and over stone,

And under mountains in the moon.

Roads go ever ever on,

Under cloud and under star.

Yet feet that wandering have gone

Turn at last to home afar.

Eyes that fire and sword have seen,

And horror in the halls of stone

Look at last on meadows green,

And trees and hills they long have known.

The Road goes ever on and on

Down from the door where it began.

Now far ahead the Road has gone,

And I must follow, if I can,

Pursuing it with eager feet,

Until it joins some larger way,

Where many paths and errands meet.

-J.R.R. Tolkien, The Lord of the Rings

Eyes Open

It has been while since I have posted. 3.5 weeks ago, I had the surgery to permanently implant an SCS into my spine. Overall, this surgery has been pretty successful! My leg pain has gone down a lot. My incisional pain is decreasing. I have been trying to walk this week, and I walked 2.5 miles twice this week and my legs and back did not hurt after (I was tired, but not a mess)! I am so thankful for all these things.

Here is the but.

When I turn off the stim, I am right back where I started. Going into this surgery, I thought I had realistic goals for what this would do. I told everyone who asked about it, "this is not a cure. It is not going to fix any problems. It will just be another tool to fight my pain, but without pills." I have decreased my pain meds this week as my incisional pain is down. And this has made me realize how the SCS is masking the pain signals. Last night I woke up with my nerve pain settled in my hips. So in the dark I fumbled around with my remote and tried to get the thing working in the right areas.

Here was my revelation last night. I am most likely permanently injured. I will probably never be completely physically healed.

I am thankful that my quality of life will improve with the SCS. I am thankful I am starting to be able to exercise again. Maybe we can even look at having a baby sometime in the near future. But I will probably always battle pain. I have a tool to fight it and hopefully it will continue to help. However the revelation of being permanently injured has settled in my heart pretty heavily today.

I was searching for some encouragement this morning and came across the road to Emmaus story while reading the book "Mended: Pieces of a Life Made Whole" by Angie Smith.

That same day two of Jesus’ followers were walking to the village of Emmaus, seven miles from Jerusalem. As they walked along they were talking about everything that had happened. As they talked and discussed these things, Jesus himself suddenly came and began walking with them. But God kept them from recognizing him. He asked them, “What are you discussing so intently as you walk along?” They stopped short, sadness written across their faces. Then one of them, Cleopas, replied, “You must be the only person in Jerusalem who hasn’t heard about all the things that have happened there the last few days.” “What things?” Jesus asked. “The things that happened to Jesus, the man from Nazareth,” they said. “He was a prophet who did powerful miracles, and he was a mighty teacher in the eyes of God and all the people. But our leading priests and other religious leaders handed him over to be condemned to death, and they crucified him. We had hoped he was the Messiah who had come to rescue Israel. This all happened three days ago. “Then some women from our group of his followers were at his tomb early this morning, and they came back with an amazing report. They said his body was missing, and they had seen angels who told them Jesus is alive! Some of our men ran out to see, and sure enough, his body was gone, just as the women had said.” Then Jesus said to them, “You foolish people! You find it so hard to believe all that the prophets wrote in the Scriptures. Wasn’t it clearly predicted that the Messiah would have to suffer all these things before entering his glory?” Then Jesus took them through the writings of Moses and all the prophets, explaining from all the Scriptures the things concerning himself. By this time they were nearing Emmaus and the end of their journey. Jesus acted as if he were going on, but they begged him, “Stay the night with us, since it is getting late.” So he went home with them. As they sat down to eat, he took the bread and blessed it. Then he broke it and gave it to them. Suddenly, their eyes were opened, and they recognized him. And at that moment he disappeared! They said to each other, “Didn’t our hearts burn within us as he talked with us on the road and explained the Scriptures to us?” (Luke 24:13-32 NLT)

Angie Smith points out that the word "Emmaus" meant "warm springs" and that there springs were often used for healing purposes when this story takes place. I find it interesting that as these men were walking toward the "healing springs" they did not recognize Jesus walking with them. Jesus reminds them of all of God's promises to His people. Yet, they still do not recognize Him. As they invite Jesus to stay with them, their eyes are opened. they see how Jesus has been walking with them on the road to healing. And they rejoice in their revelation.

So, where am I on my own road to Emmaus? Do I have my eyes and heart closed off to how Jesus is walking with me? Am I wallowing in my discouragement, or am I inviting Jesus in, and recognizing all His promises for me? The warm springs of Emmaus may not bring me full physical healing. But I must keep my eyes open to the healing that is happening in so many ways, and the presence of my Lord walking along the road with me.