Saturday, December 11, 2010

Snow!

Since I have joined the club of wheelchair users, one common thing that many of us hate is snow! It's wet and cold and nasty and it gets all over your tires and then the tires throw it all over your lap and clothes. Your sleeves stay wet from pushing, you can't roll through the thick stuff and you get stuck, the ramps are icy and you have no control over your chair. Someone is normally hanging on the the back of your chair so that you don't crash down an icy ramp and this does not help our pride in independence! We have poor circulation and once you get chilled you can hardly warm up at all. Please take note that this is why we have blankets around our legs! It's just nasty and awful!! This is my second winter in a chair and as I was looking at our snow the other day, I thought about how pretty it was. I also thought about how that was my first fond thought of snow since I had become paralyzed. I have not converted so much that I love to be in the snow, but I have learned how to deal with it a little better.

There is something about looking outside with a fresh coat of snow all over the ground. Everything looks so clean...so sparkly...so unified. The normal view of the outside is full of colors and textures. The rough greens and browns of a winter yard, the dirty gray of asphalt, and the many different variations of bushes, sidewalks, gravel, and yard ornaments are a rainbow of colors. But when it snows, something magical happens. Everything that I had become accustomed to looking at in a certain way has now been completely transformed. There is suddenly a simplicity that has taken over my outside environment. Everything has been covered with whiteness and it is all so beautiful and quite breathtaking. It makes you pause a little bit longer at the window as you look out admiring what has just happened.

Life can be like this you know. When something major happens that completely changes your view of life as you had always known it, don't resent it. Look at it as a new opportunity to simplify, to be given a clean slate to start over, to pause just a bit longer over the little things and savor that moment. Don't get bogged down in hate over the details....find the beauty in your life and hold on to that. While your at it, go make some new and unique tracks of your own in that snow!

Sunday, October 24, 2010

Stand!

I have been sitting for a little over 19 months now. One thing that has never ceased to catch my attention, is when I see or hear the word "stand". There are many hymns that talk about standing, verses that talk about standing (373 to be exact), and the word is used many times in the church service - "Let's all stand and sing...", "Remain standing for a word of prayer", "Let's all stand in honor of the reading of God's Word". This word always catches my attention. At the beginning of my wheelchair journey, a lump in my throat was always present with that word. I have long gotten past the lump in my throat, by I have not gotten beyond noticing the word "stand".

As I have been progressing in therapy, they ask what my goals are. Yesterday, it was time for another assessment and they asked me again. Of course, my goals have evolved as I have, and I have never said "Duh, to walk", although I have been tempted! Instead, I have tried to keep my goals realistic but a little out of reach to keep giving me focus and the drive to keep working hard in therapy. But yesterday, I took a chance and proclaimed "I want to stand!" Not with braces and hunks of metal holding me up, not with holding up all my weight in my arms, but to stand on my own legs and let them hold the weight of my body. I could list a zillion ways that would make life so much easier but I will spare you. My therapist became very quiet so I timidly said "Is that too high of a goal?" He said, "Well, we will certainly work hard to try won't we?"

Things like this in life really grab my attention. The Lord uses these kind of things in my life to make an impression on my mind. This morning, as I woke up and tried to move, I was stiff and full of pain. Even the knuckles on my hands hurt! My therapist had taken me seriously yesterday and we worked very hard. I lay here in the bed this morning and tried to get this crazy body of mine to start moving and started thinking. "Why would anyone in their right mind continue to go back and be put through this again? Why do I continue to try and try and try? Would it be easier to just stop and be done with all of this?" Then, I start trying to wiggle my toes and I watch them move up and down. I remember when they wouldn't do that. I roll over and remember when I couldn't do that without help. I start doing my exercises and watch my muscles jumping and spasming like crazy as they are trying there hardest to remember what to do. I sit up on the side of the bed and reach over and get something. I remember when I fell out a few times doing that because of horrible balance. I transfer out of my bed and into my chair with ease and remember how very hard that used to be. By the time I made it to the shower, where the hot water will relax my stiff and painful body, I am renewed in my commitment that I will be in my place at therapy on Monday morning. I have gained too much to give up now.

You may be wondering where I am going with this. I will tell you. Many times we get so very weary in life. We go through painful experiences and we are tempted to quit. It is just too hard. It is not worth the grief it is causing me. You may feel like this in your marriage, your home, your job, your ministry, or maybe even to God Himself. Before you quit, my dear friends, look back. Look at where the Lord has brought you from. Look at how He has worked in your life. Look at the influence you have had on people's lives. Look at the opportunities you have been given. Don't quit.

Join me in my goal - one that I desire physically, but more than that, I desire it spiritually. Let's stand! 

Saturday, October 2, 2010

Broken!

Babies and glassware - never a good combination! I had a special little baby visiting at my house the other day and I forgot to put up a "pretty" that should have been in my china cabinet. The adorable little baby was proud of the possession that she found and as she carried it into the room to show us, she dropped it and it broke. As I consoled the baby's mother, I said "Oh don't worry about it! I can superglue it, put it up in the cabinet and no one will ever see that it was broken."

Later that day, something rared up that reminded me once again of my physical limitations. I had this deep desire to punch my useless legs and growl in frustration! In my moment of self-pity, I thought how when people get a virus they are miserable and can't wait to get well. Once they are "normal" again, all the memories of their misery get diminished and they go their merry way. But when you have a permanent disability, you aren't allowed that luxury. You must deal with your trouble every single day. Suddenly though, that broken platter flashed through my mind. I immediately wished for disability superglue to fix my problems! Then I could sit on my shelf and look normal again. Wait a minute! Sit on my shelf and look normal? Have I learned nothing through my brokenness? Do I want to erase all that? No, I don't. Who get's to decide normal anyway? Maybe normal is realizing that we are all broken somewhere and sometimes in life, there are no permanent fixes. Maybe normal is being comfortable, maybe not physically as we deal with real pain, but emotionally. Comfortable in the new me and the new opportunities it may allow me in life. Maybe those who are truly broken are the ones who perceive themselves as completely normal and in need of no help in their lives.

Thanks to my broken pretty, it taught me something. I will not sit on a shelf and try to "look" normal and be of no use. I will BE normal! I will take my brokenness and allow it to be a visual reminder to me that only I get to decide what truly being normal is. Others should not get that freedom in my life. Broken? Well, physically, yes. Some parts do not work like they were designed to work. But broken and useless? No way!

And for my broken pretty? I don't think I will put it away and let it look good. I think I will display it - to thank if for the lesson it taught me!

Tuesday, September 21, 2010

Be Still

I had a long talk with my cousin today. His name is Scott and he is younger than me. Scott was born with Cerebral Palsy and has dealt with a disability his entire life. As a little boy, he was my buddy. I always felt sorry for him because you could see in his eyes that he wanted to go out and run and play with his twin brother but he couldn't keep up. So, I would always play with Scott and try to keep him entertained. There were a few times I probably just about killed him trying to figure out ways to give him his own thrills. Once, he owned a little tiny red wheelchair and I started calling him "Jehu and his fiery chariot".

I grew up, went to college and Scott grew up too. We have stayed in loose contact all of these years and any time we were together, we would bond once again. However, since I have become paralyzed, Scott and I belong to the same club. We have a tighter bond than we have ever had. Scott told me today that we were always close, but he feels so much closer to me now and I have to agree with him as my feelings reflect the same. We talk on the phone quite often and I always look forward to his calls.

Scott has a beautiful singing voice and loves music. He feels called of God to share about his disability in message and song. He has written several songs and I will include one about disability at the end of this article. He made a statement today though that really caught my ear. He was telling me about a sermon that he was preparing and he was talking about the verse "Be still and know that I am God." He said "Alicia, we should learn from this. Those of us with disabilities should be among the first to do this because we know what it means to be still and be limited in our activity."

I just can't get that thought off of my mind this evening so I just had to write it and share. Scott is right. It is true. Who are the greatest prayer warriors? Those little shut-in's that can't do much more than sit up and breathe. Who are the ones who make a great impact on our lives? Those who have been stopped dead in their tracks and could only go on because of that still small voice. Who are the ones whose wisdom we long to hear? Those who have been to the darkest recesses and have found that even in the terrifying shadows, when we don't dare move or whisper because of the fear, that God was there and comforted them.

Oh how my heart is convicted. It seems that I always have something to prove. Something to pursue. Something to permeate my thoughts and keep my mind busy so that I do not dwell on my problems. I need to stop and dwell on the stillness of my legs - not to brood in self-pity, but in a thankful heart for this gift of stillness that God has allowed me to have as a reminder to listen and to know that He is my God.
Dear God, help me to be still.

Scott's Song:

He Walks For Me
Verse 1:
When I was a child I longed to play, with my friends and loved ones I wanted to stay,
But my mother said "No son you cannot go, for your body for them is much to slow".
Chorus:
Oh mother can't you see He walks for me, through the wind and the rain, He's still the same,
He is my rock and fortress each day, dear mother, can't you see He walks for me.
Verse 2:
Over two thousand years my Savior died, much pain He bore when they pierced His side.
And my burdens were too heavy for me to bear, my Savior walked up, my cross He shared.
Chorus:
Oh friend can't you see He walks for me, through the wind and the rain, He's still the same.
He is my rock and fortress each day, oh friend, can't you see He walks for me
Tag:
If you have a need, He'll walk for thee.

Saturday, September 11, 2010

I Pity The Puppets

At therapy, I have been using a harness system that dangles you from a large metal frame and they crank a percentage of your body weight off. Every time they crank me up, I think that I know what if feels like to be a puppet! You are kind of just hanging there and waiting to "perform" whatever tasks the therapists tell me to do.

There is quite a helpless feeling as a puppet. You can't get up by yourself, your tied to all of these "ropes", you cannot move about freely, and you can't get down by yourself. Oh sure, while you are "performing" you look pretty good and amazing! But just wait until the ropes are gone - the puppet lies crumpled in a heap. At least I have my chair to land in!

My husband and I have been talking lately in regards to raising our children. How we want our children to be students of the Word of God. We want them to know not only what they believe but why they believe it. We were challenged by some friend's of ours who play devil's advocate with their children. They ask them Bible questions and then have them prove their answer with Scripture only - not opinion. It has really made us think.

I see such a deficit in this - not just among children (mine included), but among our grown-ups, our spiritual leaders, our pastor's and teachers. Many times we just parrot what we have always been told but if someone were to really put our feet to the fire about certain things we hold so fast to, we end up stuttering with some lame answer to get us off the very uncomfortable hook we have managed to get caught on.

Please don't misunderstand me, I am not advocating a reversal of everything we have been taught. Quite the opposite! What I am challenged to do is to really figure out what I believe and why. If I can't give a biblical reason for the why's, then I have completely weakened my belief to others. They will view it as just opinion and no different than the right to their own. Except they will probably just keep their own opinion by not being compelled by any greater authority which should be the Word of God. This is important to others but is is of upmost importance to our children.

I wonder how Pinocchio felt when he changed from a puppet into a human. How freeing! How liberating! How wonderful to not be controlled by other people!

As a Christian, I am not to be controlled by external "ropes" but by the work of the Holy Spirit in my life. That is an internal work and is extremely liberating because I am not jerked about by everyone who desires to "pull my chain."

The Lesson:
Simple. I pity the puppets.

Go To The Ant

Our family shared a cook-out the other evening with some friends. We were all sitting outside around the campfire enjoying the late evening and the slightly cool breeze.

The fire started to get a little low so our host threw a new log onto the fire. It was a great big round log that had been out in the sun and was all gray and crackly and immediately the flames licked all around it and up through the center of it. We remarked on what a perfect log that was for our campfire. Suddenly, we noticed so many large black ants scurrying out of somewhere in that log and they were frantically looking for a way to escape the heat. The log was in the center of the fire and they kept racing all around the same areas not knowing where to go. They were doomed for certain destruction had a little 9 year old boy, my son Caleb, not saw their fate. His heart was broken that the ants could not escape so he found a large stick and made a bridge from the log to the side of the stone ring that encircled the campfire. Immediately, the ants found the stick and their escape.

I watched and as that plot unfolded before my eyes, this verse popped into my head "How shall we escape, if we neglect so great salvation;..." . Hebrews 2:3a Silently, I thanked the Lord for saving my soul and becoming that bridge for me between hell and heaven.

After thanking the Lord for saving my soul, I then thought about the fiery trials that we go through - even as believers! The Lord is just as much as a bridge for us in our fiery trials and the continuing in our faith as He was the bridge to save my soul. Again, I silently thanked the Lord for not only rescuing my soul from hell, but for being my Rescuer every time I am in the midst of the fire.

The Lesson:

I do not have to run around frantically with nowhere to turn in my life. I do not have to be consumed by the fiery trials that we may be in the middle of. Jesus Christ has provided a way of escape - for my soul and for my life. If you do not know what it means to have your soul rescued from the eternal fires of hell, then please write me and I would love to share with you.

If you know that you will spend eternity in Heaven, and have already trusted Jesus Christ as that bridge for your soul, then don't let the things you go through in your life derail you. Keep your eyes on Jesus, call out to Him and trust Him that He will deliver you! We are not only conquerors through Christ, we are MORE than conquerors!!

"And the LORD, he it is that doth go before thee; he will be with thee, he will not fail thee, neither forsake thee: fear not, neither be dismayed." Deuteronomy 31:8

My Confession

Alright, I will admit something. I have this obsessive compulsive thing going on with my feet! I am forever wanting to make sure that they are sitting straight on my footplate. I don't want them to be crooked. They have to be perfectly side by side, toes pointing straight, and feet even. I don't even want one foot sticking out farther than the other one! Of course, every bump you hit, every wheelie you pop or every transfer you make and there your feet go - doing their own thing and completely messing up my system. I think, somewhere in the back of my head, as I stare down at my feet adjusting them once again for the umpteenth time, that I think I "look" more normal if my feet are straight!

You know, from my perspective, it is important to me that my feet are straight because that is what I see when I look down at me. However, from your perspective, you are seeing an entire person sitting in a wheelchair and I am sure you are not the least interested or impressed if my feet are straight or not. I obviously look like there is some sort of problem from your perspective because I am sitting in this chair! Believe it or not, I sometimes forget the big picture here!

The Lesson

So many times it is too easy to pick out the little things in people's lives that annoy us. We get bogged down in the little unimportant pettiness of it all and we obsess about it! That is all we want to talk about, that is all that consumes our minds, and that is the problem of the hour that we must solve!

Seems to me, we probably ought to take a step back and look at ourselves with a different perspective. We need to realize that while we may be obsessing over this pettiness in someone's life, someone may be looking at us and thinking we have a few things we could work on too!

I want to view my life as God views me and let God take care of everyone else too. I have enough to work on taking care of just plain ole' me - like adjusting my feet!:)

My Relationship To My Chair

Since my wheelchair is one of the first things you see upon meeting me, I thought we should get a clear understanding of the relationship between me and my chair.

The months before I woke up paralyzed, my legs had been getting weaker and weaker. It had gotten to the point where I could only walk around about 15 minutes or so before I would get large numb patches in my legs. my balance would go haywire, and I would feel like I was wading through concrete. We would go to a store as a family and I would sit pitifully on a bench while Jimmy and the children would get our stuff. Jimmy would try to get me to let him push me in a store wheelchair and I would say "ABSOLUTELY NOT!"

I remember one particular day in Wal-Mart, Jimmy and I had a major argument. Witnessed by the shopping carts and 5 little sets of eyes, he was determined to push me and I was determined it wasn't going to happen. I remember telling him that I would rather feel pathetic all alone on that bench then LOOK pathetic in that...that...that chair!!

When I woke up paralyzed on March 12, 2009, it occured to me in the weeks that followed that I would be living my life in one of those chairs! Over time, as i have used this chair, my relationship with it has changed. This chair is no longer something I "use". I am not "confined" to this chair. I "cling" to this chair!! It is no longer an accessory for me - it is part of me! It helps to define what and who Alicia Reagan is.

I have developed some strong opinions about my chair. I don't want people pushing "me", I don't want people leaning on "me", I want my personal zone acknowledged or I might accidentally "step" on your toes! This chair is my legs! It does not hinder me - it allows me freedom!!

In fact, I have this recurring dream. I dream all the time that I am sitting on the couch, or on a church bench, or at a restaurant and everyone gets up to leave and I can't find my wheelchair. I am always panicked in my dream asking everyone "where is my chair?!" Even in my subconscious mind I know my chair and I should not be separated!

The Lesson:
So many times we look at the Word of God as an accessory. WE look at it as something necessary for old or weak people. We acknowledge that is is a helpful thing in our lives but we would rather sit on the bench of our lives feeling pathetic, then to humble ourselves and be helped.

Many times, it is at the point of our lives when we have nothing else to cling to that we finally turn to God's Word for answers. It takes something major for us to realize that God's Word and it's teachings are not there to hinder us in our lives but to lead us to freedom in Christ!

How much greater if our Bible was not something that we just "use" but something that is part of us. Something we depend on and cling to so much that we get some strong emotions about it and even in our subconscious minds we would dwell on. Something that becomes so real in our life, it is a part of us and defines who and what we are.

My prayer for you, my friends, and for me is that our relationship with the Word of God will change and deepen as we live a life using it every day!

Thursday, July 22, 2010

What The Future Looks Like

I received my new full leg braces a few weeks ago. They have taught me how to get up and down in them at the parallel bars and how to take steps and walk with them. Braces do not help you walk - they keep your legs from buckling and from falling down. Once you are up, you can just stand there (while hanging on because I have zero balance) or you can learn to try and get those legs to go forward. Here is how that works. You lean all your weight to one leg which allows you to raise your hip and kind of throw it forward. Your hip muscles are connected to your ab muscles so a lot of the hip throwing comes from my abs. I know because my stomach is always SO sore after I do this. I do have a little bit of hip strength but the majority comes from my abs.

After having used these braces at home for a couple weeks now with my own parallel bars, it has become VERY clear to me that my thoughts about them are not quite accurate. I really thought that once I got them, I could use them at my kitchen sink to stand or maybe go around the house some but maybe not in public or whatever. My parallel bars are about 8 feet long and by the time I go down them twice, I am done. Well, not me - I feel like I want to keep going and going, but my legs will just not go anymore. I tell them to go and lean and do everything I am supposed to do, but they just won't move.

Also, the parallel bars are very steady. A walker is NOT! It is tipsy and makes me feel like I am falling over all the time. I can't even breathe the wrong way or over I go! Also, the braces are very heavy and bulky. I cannot transfer out of my chair onto anything because they are too heavy and bulky. They pull me into the floor!

So.....I got my nerve up to ask them on Monday how realistic these braces are and will I be walking with them or not. I really already knew in my heart what I felt but thought I may be wrong.

They told me that, realistically, no, I would not be walking in them. They said that there are a few people who have mastered walking with them but they had more hip movement then I do. They also said that you have muscles for strength and muscles for endurance. They explained this by saying that they could go out and try to run a marathon without being trained for it, and within a few minutes their muscles would be saying "we are done, we cannot run any more!" However, they can walk around all day and be fine because their muscles have the endurance to walk because they are trained for that. Their goal with me is to push me past my endurance level at every session (which is why I come home so tired!). They hope that over time, my endurance level will come up even if the strength doesn't come up. If that were the case, then braces would be more effective for walking with them. They said I have come a long way in one year (when I first started therapy, I could do absolutely nothing in any muscle) and that a lot can still happen but it is a very long and slow process. They said when the spinal cord is damaged, it takes a very long time to heal and you really never know if it stops healing or not. You can only try to keep retraining those nerves and muscles and hope for results.

The reason I am sharing all of this with you? First of all, because every one of you has been so sweet and encouraging along the way and have shared that you want updated so I have tried to be faithful to do that for you. Secondly, because when the general population hears the words "I took steps at the parallel bars with my braces" or "I can move my toes" or "I feel pain deep in my legs", then they automatically assume that you will be up and about just like the old days in no time and it just isn't so. There is much involved and it is extremely complicated and part of how I want to use all this in my life, is to help explain in as simple terms as I can, the actual process and how it all works.

For the record, I am not upset about what I was told on Monday. I am at peace with living my life from this chair and long to reflect Christ in my life. I want to do my part in recovery, but whatever God does with the rest is up to Him. God is good!

Thank you for your faithfulness and interest in my life. Let's all keep serving Him!

Friday, June 25, 2010

Whew.....!!

I recently was alarmed by something. I thought I had gained weight!! I have no ability to weigh myself, so I have to depend on other clues. Just for the record, not being able to weigh myself would be a definite perk to paralysis!

My clothes seemed to be fitting me the same, my face really didn't look any puffier, my legs were only swelling in the evenings, so what was causing this problem that made me think I was getting fatter? I was having a VERY hard time pushing myself up any incline. My ramp out front, my driveway that slopes up, even just pushing across carpet was SO much harder!! I knew I have been faithfully working out my upper body and so my pushing should be easier - not harder! So, I concluded that I must be putting on weight somewhere and was getting heavier and did not know it.

I had just about decided to give up my ice cream for the summer (which is a MAJOR sacrifice for me) when I discovered something. I do "wheelchair push-ups" where you put your hands on the top of your tires and "push up" lifting your backside off the seat for a minute or two to give yourself pressure relief. It also helps relieve a tiny bit of pain for me in my hips. I do it quite often without even thinking about it. This day when I did it, I realized that the tires felt a tiny bit squishy under my hands. Nothing major, the tires didn't look low or anything, but I decided to ask a guy in my church who had an air compressor if he would add a little air to my tires.

My tires are supposed to hold between 85-110 pounds of pressure and they had about 45 in them!! He inflated them to the proper amount and I headed home. I could not believe the difference!! I whizzed up my driveway, whizzed up my sidewalk ramp, popped into the door of my house and right on in the living room. I suddenly felt 50 pounds lighter. I was ecstatic!! The ice cream could stay!!!

Over these last few days, it has amazed me how that loss of air could cause me such discomfort and trouble! Obviously, I know a flat tire is a problem (been there, done that) but I had no clue how a tire just low on air could hinder my productiveness in getting around.

Lesson? Here goes: how much in life do we go about trying to do in our own power? We struggle on, trying to do the same old things we have always done, but something is different. It is not as easy or enjoyable as it once was. We struggle to do the things we have always done well before. What is our problem? Have we gotten fat and lazy? Maybe. However, I would say that most of the time it is because we are trying to do it without the indwelling of the spirit of God in our everyday life. I am not talking about salvation here, but about letting Him fill our life and all the things that we try to do, doing it through Christ who strengthens me. How many times do we get the "I can do all things" part down, but we forget the "through Christ" part.

Don't get bogged down wheelin' your way through life all alone. Be filled with His presence, be filled with the joy of the Lord, be filled with the power from on high - and roll on!

Tuesday, June 15, 2010

Feeling Jumpy

Several years ago, I took a red oil lantern and wired it for electricity and turned it into a reading lamp for my boys. They had taken it downstairs to their new bedroom and wanted to use it. It kept flickering on and off, like it wasn't plugged in good, but it was. We have concluded that there must be a short in the wiring now, and it is not safe for them to use. I must repair that lamp before it will be able to be used again.

Yesterday at therapy, my therapist decided we were going to work on my hamstrings - the muscle that runs up the back of your leg above your knees. He laid me on my stomach, put a large pillow roll under my ankles and said "Try to pull your foot up towards your backside". Well, the most unusual things started happening! On my right leg (the stronger one), I would tell my foot to come up and it would move about an inch, then down it would go, again I would tell it and it would hop about 3 inches, back and forth I fought with it until it finally jumped so big I about kicked myself in the head! (okay, slight exaggeration but I want you to get the picture!)The actual hamstring muscle was jumping so bad under my skin that it looked someone had implanted Mexican jumping beans behind my knee! The therapist laid a rolled up rag behind my knee and the jumping hamstring muscle kept knocking it off!

Once I got the leg in the up position, I would tell it to go down and it would start to, then kick back up and then head back down, and the fight was on again. I had never yet experienced this during therapy!! I am used to commanding my body to do something and it does absolutely nothing. To have it do a little bit of what I said, and then jump around like crazy and do it's own thing the rest of the time was....confusing to me. I didn't know to laugh at it - because it is really, really unusual - or to get mad!

I asked my therapist why this was happening. He said "welcome to the world of spasms." He said he could take the rest of the session explaining it in detail, but the basic idea was that because of the messed up communication, my nerves were trying to get signals to my muscles, but they were confused and weren't getting simple commands. Some of my paralyzed friends I have met along this road, deal with this all the time and have to take medications to keep it under control. I have never had any major issues with it before though. He said that the ability to walk is based on quick responses from all kinds of your muscles (abdomen, glutes, quads, hip flexors, hamstrings, calves, ankle flexors) and that only my hips are responding pretty quickly to my command (at least until they get tired). So, we keep trying to train them to obey quickly and without confusion.

Wow. The application of this to our Christian life is very convicting to me. I think how many times, because my communication is not right with the Lord, I get "mixed signals" from God. The problem is not because He has not given a clear command or taught us in His Word. It is because my communication with Him (Bible reading, prayer, meditating on His Word, giving and singing praises to Him)is not right. We get mixed signals and we come out thinking and doing the wrong things.

We are such emotional people. We are up and down and up and down. We are so inconsistent in our spiritual lives. We keep working in our own strength, fighting and struggling to get things to go and work out like they are supposed to, but we have forgotten and missed the simple things we are commanded to do. Have I read my Bible today? Yesterday? This week? Have I talked to the Lord today - not just about my problems, but to fellowship with Him, thank Him for His blessings, rejoice that He is my Father? Have I been to church faithfully to be exhorted? We don't do these simple things and then we wonder why we struggle at times. We live with mixed signals and then we take it out on God for why things aren't working out right in my life.

I say this analogy is convicting because it is true in my life. How many times am I having a grumpy day and realize that the Lord did not get the "first fruits" of my morning? How many times have I ran to the Lord for comfort or help, but haven't come to Him to just have a wonderful chat? How many times have I wanted Him to help me, but what have I done in my service for Him? How many times have I sought the "deeper" meanings and answers to life, and have failed to obey the simple things - like love one another...encourage one another...judge not...be ye kind...submit yourselves one to another...preferring one another...be ye holy....and on and on? I am guilty of all of these things.

A "jumpy" Christian is not stable, and like that old lantern light and my legs, they can be unpredictable, dangerous, and not very functional to the body of Christ.

So...every time my legs get jumpy, I want it to be a physical reminder for me to check my heart and life and make sure they aren't jumpy too!

"A double minded man is unstable in all his ways." James 1:8

"Therefore, my beloved brethren, be ye stedfast, unmoveable, always abounding in the work of the Lord, forasmuch as ye know that your labour is not in vain in the Lord." I Corinthians 15:58

Sunday, May 30, 2010

The Butterfly...

The last few weeks I have been very emotional about a few things. I have questioned myself as to why I am revisiting some of these emotions that I thought I had already worked through.

Today, as I watched a butterfly flutter its way around my blooming flowers, I wondered if he ever missed being a caterpillar. Somehow, in that single silly thought, lay the answer to my wonderings.

Summer is in full swing at our house. There are projects that we are trying to do, cleaning out of winter clutter, and activities to plan. There are certain traditions that we have done every summer as a family - playing in the creek, hiking in state parks, riding bikes with the children, hours of fun at playgrounds - so many things that remind me of what life was before and the reality of how it is now. Last summer, I was very pregnant, having the baby, and recovering from surgery so somehow these things didn't bother me. This summer...I feel more like my old self and am ready to go!

I try to continue to do what I can and make the adjustments to doing it differently. But it is different - sometimes so very different that the memory of it is too painful to even want to continue trying. But I must keep trying - I don't want to give in and quit.

Anyone that is paralyzed can tell you that so many things are a struggle. Paralysis is not just that you can't walk. To be honest, without going into detail, there are other things that I would rather "get back" that would be higher on a list than walking.

There are, of course, the physical struggles of wheeling yourself from point A to B. The struggles of getting up, showering, getting dressed, doing your housework, cooking, trying to keep your body healthy and functioning as it should, circulation issues, trying to avoid pressure sores, and trying to stay limber so your joints don't freeze.

There are emotional struggles. Feeling like you are a burden to those who help you - from your closest family member who helps in ways that no one else sees, to you friends who put your chair up for you in the rain while you sit in the dry car. The struggle of living with pain every day but trying to stay cheerful so you have a happy atmosphere in the home. You know, "If momma ain't happy...."! The struggle when your children come to you crying because they can't remember anymore when you walked and you convince them that we are all together and alive and that is what matters. They walk away happy and satisfied and then you cry because you feel like you have been the cause of their little broken hearts. The struggle of hearing fun activities being planned and knowing that every little detail will have to involve if you can get around in your chair or not. If it is not accessible, you are out.

Yes, the spiritual struggles. Balancing a life of faith with a fleshly body. Balancing asking God questions without demanding answers. Balancing "leaning not to my own understanding" with wanting to figure it all out. These last paragraphs have not been written to evoke pity but to make a point.

That butterfly - that beautiful butterfly, freely flying through the air. So quickly it went, wherever it wanted. No barriers. No struggle in sight. Gracefully maneuvering and providing me with joy just to watch it. Then came the question if it ever missed being a caterpillar? I am confident that if it could communicate to me, it would say no.

That caterpillar - limited by the ground or only where his feet would allow him to go. Trudging slowly along wherever he went, he was prey to anything that could come along and stomp him underfoot.

That day - the day the change happened for him. He was thrown into a world he had known nothing about before. Changes took place in his little body that, had he human emotions, would have frightened and panicked him as he felt like all control had been lost.

The struggle - the process of coming out of the cocoon to be revealed as a butterfly. The story is told of a man who watched this process happening. He watched the butterfly struggling and struggling to break the cocoon away from himself so that he could be free. The man felt pity for the little butterfly and helped to break away the cocoon to free him. When the butterfly came out, his wings were crippled and he could not fly. The man asked an authority why this had happened and was told that the struggle of breaking out of the cocoon was what strengthened the wings and allowed the butterfly to fly.

I want to not be bound by the past, by fears, by unanswered questions, by the feelings of loss or sadness, or by my own lack of faith. I want to be free. I want to fly. I know that it is in and through these struggles that I am gaining the strength that I need to be free. I know, that as I come through these struggles, a stronger wife, mother, friend and Christian, I will look back and never desire to be a caterpillar. I can already see some things, but at times my vision gets blurry.

I am so thankful for my Creator and the reminder of the butterfly to clear things up for me. Let's fly!

Monday, April 26, 2010

Each step I take....

At therapy today, I set a new record of walking 39 feet with braces. I didn't really know what Jeremy (my therapist) had in mind. We have braced up (I sound like a horse getting saddled up!) many times before and practiced standing and some steps at the parallel bars and also in this harness thing where they take like 50% of your body weight off. However, today he said "Give me a minute to go get a spotter".

He came back with a rolling walker and another therapist and said we were going to the hallway. I wish I had a camera for the scene that followed - well, no I don't because it must have really looked silly. It gave me a good laugh. Imagine me sitting in the chair with my legs sticking straight out (because they are braced). I can't go forward myself because my shoes are touching the floor and my legs won't bend to put them on the footplate. I can't pick them up myself and push myself, so Jeremy just gets in front of me and picks up my feet and the other therapist pushed me and I just set there wondering where they were taking me and what were we about to attempt. You probably had to be there but we looked really funny!

Out in the hallway, Jeremy said that we were going to see how far we could go today without bars. I was able to get up (with a little assistance - rolling walkers on linoleum is not the most secure feeling in the world!) and we were ready to go.

This is the part of the story that has inspired this post. I can't feel my feet on the floor and can't really tell where my legs are in relation to the rest of my body so I have to watch to see what is happening. Since you can't tell where your feet are, it is very hard to ever feel balanced. With the balance issue and feeling very unsure of what your lower body is going to do, I cling on for dear life to that walker! Ever so slowly, one lurching micro-step at a time, you make progress. I was focusing so intently on each step that I didn't even notice where we were in the hallway. My arms were burning, every muscle from my neck to my waist felt strained, 3 fingers on each hand were numb from gripping the walker so tight, and Jeremy said "just a tiny bit more Alicia". It was then I looked up and we were about 5 feet from a doorway. I said, "I want to pass that door." He said "Okay."

After awhile, my legs just hardly won't go anymore. The muscles just decided they have had enough and they will not do anything else. When this has happened on the parallel bars, Jeremy always takes his hand and moves the leg/foot where it needs to go and moves it forward for you. By the time, I had looked up and decided to pass that door, I was already struggling. He kept reaching down and wanting to help and I said "Jeremy, I am going to pretend to be my 2 year old. I want to do it all by myself." So, he was patient with me and let me try.

I didn't think I would make it those last 3 feet - literally the width of that doorway. It took about 10 minutes, but I finally made it! I collapsed into my chair absolutely drenched and exhausted and Jeremy patted me on the back and said "Good job."

My mind has been thinking about this beautiful hymn and what it really means in our lives. Of course, music is a huge part of my life and always speaks to my heart. If only we would concentrate hard to make sure to guard each step we take. If only we would cling to our precious Savior as much as I clung on to that walker! Realizing that without it, I could do nothing! If only I tried so very hard, that every ounce of energy I had would go into a life of pleasing Christ because I have a goal in mind - not of reaching Heaven, that has been paid for by the blood of Jesus, but of hearing my Heavenly Father say to me "Good job. Well done thou good and faithful servant."

Each Step I Take


Each step I take my Saviour goes before me,
And with His loving hand He leads the way,
And with each breath I whisper "I adore Thee;"
Oh, what joy to walk with Him each day.

Ref:
Each step I take I know that He will guide me;
To higher ground He ever leads me on.
Until some day the last step will be taken.
Each step I take just leads me closer home.

At times I feel my faith begin to waver,
When up ahead I see a chasm wide.
It's then I turn and look up to my Saviour,
I am strong when He is by my side.

I trust in God, no matter come what may,
For life eternal in His hand,
He holds the key that opens up the way,
That will lead me to the promised land.

Thursday, April 22, 2010

Perspective...

I just got home from vacation. We went to Tennessee to visit our families. We love to do this every spring because my in-laws live on a farm and it is so relaxing to go and do nothing but hang out. I always get like a little girl and get all giddy before we go. I can hardly sleep the night before we are to leave because I am so anxious and excited. I always want to drive because my hubby actually goes the speed limit and I like to go 5 over because I think we get there quicker!:)

We were on the interstate and I got behind this big semi that was hauling this huge piece of machinery. He was going up a hill and so he had really slowed down. I was in a hurry to get around him but couldn't because of the stream of traffic coming around my left. I started to get really irritated that I had to wait a few minutes longer to be able to get around this annoyingly slow semi. As I was waiting, the thought hit me, that many years ago, we would not be on a 4 lane interstate but on one lane roads and then I really would have a long wait. I thought "Alicia, you better be thankful that you only have to wait a couple of minutes and then you can get around this big guy. Be thankful you have the extra lanes to safely do that." Well, that got me to thinking some more - about our perspective.

I get aggravated because of obstacles that get in my way. I get aggravated at building designers and such for not thinking about people in a chair. My own local pharmacy here in town has 2 steps to get in their door! I'm sorry but that doesn't take a rocket scientist to figure out that eventually someone in a wheelchair might need to go to the drugstore! I have said myself "Good grief. Don't they know this is 2010!" But if you compare it to where we were years ago with this stuff, we have come a long way. Many advances and improvements have been made for wheelchair users.

I don't like being in a wheelchair, but I am thankful for it. If I didn't have it, I would be stuck in bed all day long! So, no, "they" don't have it all figured out, but I am glad for all that we do have to help us, sports we can play, support groups we can join, public voices that can be heard for our sakes (Christopher Reeve), and the internet, blogs and Facebook (smile) to keep us all connected.

Not thrilled with getting behind slow semi's, but glad for the extra lane to pass him with. Just the way you look at it I guess.

Friday, March 12, 2010

Bittersweet....March 12, 2009

I love dark chocolate. I love the sweet taste with that subtle touch of bitter. It makes a most pleasant treat. That is sort of how I feel about this date. There have been so many things that have been sweet and precious to me this past year since becoming paralyzed, but it still has the slightly bitter side that can't be denied.

This week I have been reflecting on a lot of things in my mind and you will have to forgive me if I sound like I am rambling in this note. Jimmy asked me today "Does it seem like it has been one year?" My answer - "It depends on the day you ask me that!" Sometimes, it seems like this year has passed so quickly and so many changes! Other times though, like when I am frustrated because I can't quite reach that crumb I am trying to sweep up, it seems like it has been 100 years!

I have been thinking about where I was last year at this time. I was 5 months pregnant. I had already been seeing doctors and we were trying to figure out what in the world was going on with me. I became paralyzed overnight and we were so scared not knowing what it meant for me, for our baby, for our family's future, would the paralysis keep going up, would I die, how do you have a baby, how do you take care of a baby, how do you take care of my other children and be the wife and mother I need to be. There were so many unanswered questions and fears.

The questions and fears were on our minds, but then you had daily life to try to live. I had to relearn everything it seemed. Things like getting dressed, going to the restroom, getting in your chair, getting into a vehicle, maneuvering your home, your kitchen, and your chores. So many of these things that you learned in toddlerhood!! You feel so dependent - like you have become a baby all over again with everyone helping you on everything. I thought my driving days were over. I did not know people could drive and be paralyzed!! There was so much I didn't know! These were all bitter things and things like this still pop up and you have your "growling" moments but they are not as often as they used to be!

When I look back now, I see how much I have learned!! I remember when I first would go out, maybe to Wal-Mart or something, and it would be time for me to get out of the chair and into the van or vice versa. I would look all around and make sure nobody was watching. If someone was walking through the parking lot, I would just sit and wait. Jimmy would say "Get in" and I would say "Wait a minute". He would say "Why?" I would say, "BECAUSE!! There are people walking by - just wait a minute!!!!" Of course, he would wait patiently and never gripe while I sat and waited for the parking lot to clear. I was so self-conscious about it! Now, I am like yelling across the parking lot, "Hey, everybody!! Look what this cool crip can do!! Bet you never knew that we could get in and out of cars all by ourselves did you?":) I really don't yell that but it doesn't bother me at all and actually, I never even think about it. Well...there was a time a couple of weeks ago that the old man parked next to me in a handicap spot and I was putting my chair together to get out and go in the store. He got out of his truck, and wobbled very precariously over to me and said "Is there something I can do to help you?" I thought, "Yes, please go very carefully back to your vehicle and sit down before you fall and then we will have some real problems!!" I actually just smiled, thanked him and told him that I had it all under control. It was sweet to know that chivalry had not died! But, I did think about it that day that people do watch but I had forgotten that.

The daily part of life - getting ready every day, getting chores done, cooking and cleaning, taking care of the baby (who survived all of this just fine), taking care of the other children, still loving my hubby and trying every day to somehow compensate for all he does for me - this is all just our "normal" life now. We were at a park today with the children. The sidewalks did not go all the way to the play area and the whole area was covered in thick mulch (which is a major non-access substance for wheelers) and I was watching Jimmy push our children on the swing set. They were all squealing and giggling with joy while they yelled out "Watch Mommy!!" I had a twinge of sadness hit me, that I wanted to be out there playing with them. I wanted to push them again. But then I stopped, and thought, "Alicia, listen. That means life is normal. You children are happy. They are fine. You are fine. Life is good." And life is good.

I have met fabulous women who are in chairs and have been a wealth of information and encouragement to me. We have more answers about our future (well, as much as anyone else can know), the doctors don't think this will progress, they think I may recover some, therapy is going good, I have learned more about the human body and the spine and paralysis and trust me - it is complicated!! I feel much more educated and knowledge is powerful at times to controlling your fears.

So, on this date, a date that is a marker of something that has drastically changed my life, I hope that I will learn to savor this date - not dread it. To remember, that yes, life has changed but I have changed. I have grown, I have learned, and I have been enriched by those around me. My priorities have changed, new goals have been made, and I look forward to a bright and happy future. My heart has been reshaped for those with disabilities and new doors have opened for me because of mine.

God is good. He truly can take a catastrophe and use it in your life. I am looking forward to another year!!

Friday, February 26, 2010

Is Not Bound

In church the other day, a verse was referenced that jumped off the page to me. I underlined it in my Bible, wrote my little note beside of it like I have a habit of doing and moved on. I thought I moved on, but that verse has stayed on my mind and I catch myself thinking of it over and over.

Here is the verse: "Wherein I suffer trouble, as an evil doer, even unto bonds; but the word of God is not bound." II Timothy 2:9 Of course, we know that Paul was writing this and that at the time he penned this, he was a prisoner in Rome and shortly would lose his life for the cause of Christ. He was talking of the bonds of his prison. It is an obvious fact that since we can read that verse while holding the Word of God in our hands, that it is true - the Word of God was not bound.
I know the verse jumped off the page of my Bible to me because of what I view as my own personal bondage. Waking up in the morning and facing today in a wheelchair I can handle. Thinking about the next year or five or twenty, is at times overwhelming. Sometimes my "bond" is not only the wheelchair and the many unseen things that go with that chair, but the fears that can plague you. There is an anxiety at times that billows over you - out of nowhere - and you think "Okay, this nightmare can just stop now."

My bond, a disability, meaning that I am not able to do something like able people can. In my case, it is paralysis. For others, it could mean blindness, deafness, loss of a limb, cognitive issues, and the list could go on and on. It is so easy to develop a selfish attitude and feel sorry for your loss. It is easy to take your frustrations out on those you love. It is even easy to question "why"? It is easy for all of us to live selfishly anyway, but when you think you have a pretty good excuse and no one would blame you (they wouldn't like you either) for it, then it is even more tempting.

Maybe my thoughts on this have been exaggerated lately because our county has three elementary schools that have been re-built. The old buildings are going to be torn down and they have had an auction the last two weeks at the old school buildings. Jimmy went the first week and came home saying how ridiculous it was. The school had stairway after stairway and there was no way I could have gotten in. I thought "No problem, the next school will surely be better." So, the next week, we drove over to get a look and same problem again. Jimmy and the kids looked around and I sat in the van. Apparently, if any of the kids were in wheelchairs, they got to go to school in a modular, away from the school building and all the other kids. This steamed me up. I felt really mad for those kids. I felt really mad for me. I felt really mad!!

This is the type of scenario that can kick start the "oh-me-oh-my" mood. I do not like this mood and I know it is sinful and not pleasing to the Lord so I try to ask the Lord to help me focus on Him and change my attitude! This is when the Lord always pleasantly surprises me and thus, my verse jumping off the page at me.
This passage has spoken to my heart also. "Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you: But rejoice, inasmuch as ye are partakers of Christ's sufferings; that, when his glory shall be revealed, ye may be glad also with exceeding joy. II Peter 4:12-13 "Think it not strange"? "But rejoice"? Are you kidding me!!! No, He is not kidding. God knows that this "disability" is nothing new to Jesus Christ. He has suffered all that we ever will. This likens me to Him. Isn't that what we all say we want?

This convicts my heart so because I realize more and more how worthless my words are. I can't begin to tell you how many times in my life I have prayed to be more like Christ. And now I have this new way of life, that has the potential to make me a partaker with Him in His sufferings, and I don't want it? Did I really mean what I have prayed? It humbles me. I see my humanness and frailness and I realize again and again how much I desperately need Him.

You see, I don't have to be able. He is able. He is able to do more than I could ever ask or think. I may be bound, but He is not. I am encouraged and want to encourage anyone with any sort of disability that although we may live in bonds, the Word of God is not bound. If we will only trust the Lord to use us, through our bonds, we can be instruments of Jesus Christ sharing His precious Word.

Wednesday, February 17, 2010

If it's music you want to make...

Yesterday, I decided that I was going figure out how to play the piano. I haven't played because I can't do the foot pedal and anyone that plays, knows how it sounds to play without the foot pedal. I went to the music store and asked the manager if they made something for the sustaining pedal that would allow me to play. He put the foot pedal on the top of the keyboard (you know, the little black plug-in foot pedals) and said "Hey, you can hold the foot pedal with one hand while you play with the other!" I just looked at him and then said "O.....kay. Thank you very much." I am a little surprised that he made it to the manager position in a music store.
So....back to yesterday. I decided that I would play anyway without the pedal and practice my note reading/playing. I decided that I would play the Crown arrangement of My Father Planned It All.


Breakdown of the grand concert:
1. Lets move the piano bench. Problem, my knees are hitting the piano and won't go under. That's okay, let's sit too far back from the piano and lean over. Problem solved!
2. Bend fingers back and forth in dramatic flair to prepare for the grand concert.
3. Start playing the arrangement. Problem - it sounds like chopsticks. Let's hold the keys down longer while trying to maintain the flow of the arrangement. Still sounds like chopsticks.
4. Yell for Briley and ask her to pull up a chair and try to hold the foot pedal for me. Problem - she doesn't know when to go up or down. Tell her to count and lift her foot on the number 4. Uhmmm....now we have a combination of chopsticks and notes that are bunched together and sound awful.
5. Briley suggests that I nod my head at her every time she needs to lift her foot. Sounds simple enough - it's not. My brain is not that complex. I am trying to read these notes!!
6. Tell Briley thank you for her help and ask her to go into the other room with all the children.
7. Calmly take out my frustration by banging all the notes on the piano like a 2 year old and feel much better.
8. Close the piano lid and decided that the guitar is the instrument for me.
9. Get out the guitar and practice.
10. Aww....much better. Problem solved.

Moral of this story -
Life can throw you challenges. We all have them. Sometimes you can figure out a way to do things, and sometimes you can't. But don't stop trying. If it's music you want to make - then find a way to make it!!

Wednesday, January 6, 2010

New Therapy Goals

I had to cancel therapy yesterday morning because of the snow. I was really bummed about it. I had already missed a week and a half because of the holiday's and that was okay. I was just really ready to hit it again. So, when we awoke to snowy roads and salt trucks I was sad.

We are still going to therapy twice a week and Jeremy (my therapist) has given me LOTS of homework to do at home every day along with exercises I am to try to do with the E-Stim machine. From the time I wake up in the mornings, it is about an hour and a half before I come out of my room because of exercises. It is a lot of hard work but I am starting to see some pay-off especially since we have started the E-Stim machine at home every day.

For example, I have always been able to bend my toes down (since the beginning) but I can now lift them up on my right foot and I can lift them on my left foot if you tickle the bottom of my foot (I can't feel the tickle but they will lift only then - crazy I know!) If I am laying flat on my back and my knees are bent up, I can keep my right leg from flopping over on the bed and can almost lay it over slowly but I haven't quite got all the control on that once gravity is taking it down. The left leg is a different story - it is the wicked step-child! I can tell that my transfers seem easier. I don't really feel or know why but they just seem easier to me. I know I am stronger in my upper body but it seems like it is more than that so I think some muscles must be kicking in somewhere and helping although I don't know which ones. I may be dreaming on this one but it just seems like it to me. As of this week, I am able to move my legs a tiny bit (again the right one mostly) when I am sitting in my chair. This is a first because any movement I had before was only laying flat on my back where absolutely no gravity was on me. I am getting some feelings back though at this time they are not at all pleasant. If you touch my skin I cannot feel it but I feel like I can feel stuff deep in my bones. Like yesterday, about 6 inches of my left thigh bone hurt SO bad all day long and I don't have a clue why. But...it's feeling something which is more than it has been so I guess that's good. I could probably name a few more things that seem really minor but to me they are pretty major!

Having said all that, our course of therapy is changing. At the first, all of our exercises were really range of motion kind of stuff to stretch my muscles back out and stuff like that. But now, since the E-Stim machine has come into play, therapy has bloomed into a lot of trial and error kind of stuff. I think Jeremy's famous words are "Let's try this and see what happens!" I always say "Let's roll!" Every time I say that, I want to hear the theme song for Rawhide to come on in the background...."roll 'em, roll 'em, roll 'em". :) I think it would be a great dramatic effect!

So, Jeremy told me today that it was time for him to fill out his new goals for me. I asked him what they were and he said that his new goals for me were standing and walking with the parallel bars. Just hearing the words "walking with parallel bars" sent shivers down my spine! I told Jeremy that I have had some say to me "Oh! If you can move your feet, then you will be walking in no time!" and that I did not know how to reply to that. He said to say that we are working as hard as we can, and that we want to stay positive but that we also must stay realistic. He said that walking involves a LOT and that we are just not anywhere near that right now and may never be but that we are just taking one day at a time. I guess I needed to hear him say those things as much as I need to tell anyone else.

I have a lot of mixed emotions about it all. I told Jimmy I feel like my body is teasing me somewhat. Every little thing that I feel like might be coming back makes me want to panic or something and want it all back RIGHT NOW! It brings back a lot of memories of "how it used to be" and makes you crave it something awful. Even my dreams....they had all changed to me being in a wheelchair and now I am walking and standing in them again. I wake up so disappointed. I am trying very hard to balance all of this with "in whatsoever state I am therewith to be content". Because, truly I have been and still want to be. I feel like I am battling my mind with "I want it all or nothing" which is so selfish and petty. There are a lot of people who would give anything to just be able to move a toe and would think I am an idiot for agonizing over it and they would be right!

I am just going to take it all one day at a time, work as hard as I can, be thankful for every improvement and be thankful if no more improvements happen at all. I am happy that my Rock is unmoving and that He is always there for me to sort out my weird emotions and keep me on track!

If you have endured reading this to the end, thank you for your interest and prayers. I would post photos or something of progress but at this point I am too embarrassed! Maybe one day soon...:)