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!

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.

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.

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!!

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.

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!!

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...:)