Tag Archives: disability

Boo Hoo Days

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I have talked to several people recently who are going through a rough time.  Some are reliving painful memories, some are just facing normal life struggles, and one is facing something scary that is still to come. I will add myself to this list because I had a pretty rough day one day this week too.

I watched Diane Sawyer’s 20/20 story of Congresswoman Gabby Gifford and her husband, Mark Kelly. Gabby was shot in the head at a rally and this story is a video diary that Mark made of her following her recovery. If you have not seen it, I would highly recommend that you take the time watch it.

There was one particular scene that has stayed in my mind so vividly. Gabby is in rehab and they are trying to teach her to say a word. She keeps failing at this and finally, instead of crying, she puts her head down and repeatedly kept saying, “Boo hoo, boo hoo, boo hoo.” The therapist asked her if she was frustrated and Gabby could not put the words to her feelings. She then began to sob in frustration. Her mouth could not speak what her heart was feeling.

I have thought about that scene over and over. Maybe it struck a personal chord because I have spent time in rehab and have felt the depths of that frustration when you cannot do what you want to do. But, even now, I think all of us have days that I am going to call “Boo Hoo” days.

Boo Hoo days just happen. They are planned or pre-meditated. Actually, they kind of hit like a surprise attack! Life just seems to suddenly smack you in the face and, as you sit in shock, it is hard to even express your innermost feelings. Sometimes it is hard to know the words to say and other times, you know exactly the words you are thinking, but it is hard to face them.

During my own Boo Hoo day this week, I reminded myself of this verse: “Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered.” Romans 8:26 

This verse was such a comfort to me! To know that I have such a friend like this that knows me, knows my name, knows my heart and even knows the things to say that I can only seem to groan about in my despair. What a friend! I can just grunt something and He knows exactly what it means. You know what else? He takes what I mean and He prays for me. Wow. Jesus Christ praying for me on a Boo Hoo day. If that can’t help your day, then I don’t know what will.

I am so thankful for my everlasting Friend, Who takes my struggles, my pain, my misunderstandings, my despair, my turmoil, my weariness, my crisis, my frustrations and when I can’t mutter anything my heart feels except for “Boo Hoo”, He knows exactly what I need and He prays for me.

Here is one of my favorite hymns because it puts my heart right where it needs to be on my own Boo Hoo days.

Jesus Is All the World To Me

  1. Jesus is all the world to me,
    My life, my joy, my all;
    He is my strength from day to day,
    Without Him I would fall.
    When I am sad, to Him I go,
    No other one can cheer me so;
    When I am sad, He makes me glad,
    He’s my Friend.
  2. Jesus is all the world to me,
    My Friend in trials sore;
    I go to Him for blessings, and
    He gives them o’er and o’er.
    He sends the sunshine and the rain,
    He sends the harvest’s golden grain;
    Sunshine and rain, harvest of grain,
    He’s my Friend.
  3. Jesus is all the world to me,
    And true to Him I’ll be;
    Oh, how could I this Friend deny,
    When He’s so true to me?
    Following Him I know I’m right,
    He watches o’er me day and night;
    Following Him by day and night,
    He’s my Friend.
  4. Jesus is all the world to me,
    I want no better Friend;
    I trust Him now, I’ll trust Him when
    Life’s fleeting days shall end.
    Beautiful life with such a Friend,
    Beautiful life that has no end;
    Eternal life, eternal joy,
    He’s my Friend.

 

 

 

 

Learning to Communicate

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I was home from church Wednesday night because of…well, let’s just say a paralysis kink that sometimes makes me have to stay home. Anyway, as my habit is, any time I have to miss one of our own amazing church services, I watch the live services of Temple Baptist Church in Powell, TN. The preacher that night was Tim Tomlinson – a dear friend from college days. He preached a wonderful sermon on getting much out of God’s Word but it was his illustration towards the end of his sermon that this post is about.

Tim and his dear wife have a most adorable little boy who is hearing impaired. Tim was giving an illustration of how he found their little guy in his room surrounded by many empty gum wrappers. Tim was telling the audience that he asked his son if he ate all that gum. What grasped my heart was that Tim used sign language as he was asking his son about the gum. And Tim used those same signs as he was sharing this story with us. It was obviously very natural for him and he didn’t hesitate at all in doing this in front of this large audience of people he was speaking too.

I went to college with Tim and his wife, Angie. They did not use sign language then. What changed? Obviously, a child was born that they desperately wanted to communicate with. They would go to any length to do what needs to be done for their children just as any loving parent would. Their was no embarrassment, no awkwardness, not even a slight hesitation as Tim talked about his son. I adore the Tomlinson’s for that. These things are so personal to me now. As I watched Tim giving his illustration, I was seeing another illustration. An example of a father’s love for his son. Of a Heavenly Father’s love for His children.

Oh how I pray my communication with God was so pure and sweet. That I would always realize my deep need for Him – to hear Him, to know what He is saying to me, and to learn to communicate back to Him because of this need. My prayer is to make it natural. No shame, no hesitancy, no embarrassment – just a devoted love between me and my Father. Will you join me?

 

 

For Better, For Worse

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“For better, for worse, in sickness and in health, to love and to cherish…” These are words that my Valentine and I spoke to each other in a covenant to God on December 4, 1998. We meant them that day as much as our hearts could mean them. He was my prince who had made all my dreams come true and I was his princess. Our home was established that romantic evening and our desire to stay faithful to one another and to God was burning in our hearts.

Life started and moved on. God called him away from the financial industry into the ministry. Children came and we even located away from our families where God called us to serve. We have had our ups and downs as every couple has as life gives you new adjustments. Some things we handled properly and some things we did not. All of those times were stepping stones in the path of married life that you learn from. Through all of that, our desire to be committed to one another and to our Lord stayed true.

The biggest challenge of our marriage came in March of 2009 when I became paralyzed. We are so thankful that our marriage was strong when that trial came into our lives because if it wasn’t, I just don’t know what may have happened. Everything that had been established as the “Reagan Home” was completely turned upside down. Suddenly becoming childlike and needing assistance in simple things like dressing, bath rooming, bathing and putting your shoes on to the simplest forms of romance – like no longer being able to hold hands as you walk together became so confusing and redefined our ideas of what our relationship was. No one wants a marriage to seem like parenting where one constantly takes care of the needs of others. But such is a marriage many times when one becomes disabled.

There were a few times that we both would just sit and cry. We were frustrated trying to understand all of these new things. Selfishness reared its ugly head as Jimmy and I both were trying to get a grip around our new roles in life. We discovered that although I am the one that became paralyzed and people notice me because I am sitting in that wheelchair, the disability belongs to both of us. His life changed as drastically as mine. His role in our disability doesn’t involve sitting in a wheelchair, living every day with pain, and not physically being able to be involved in things you once loved. However, his day involves not only the demands of the ministry, but also one of helping me all day long. Our marriage developed a new psychological and emotional layer that we had never before had to deal with. We both learned that there were new ways to meet each other’s needs, physically and emotionally, and we chose to dwell on the joy of discovery instead of the disappointment and frustration of what we had lost.

I love my Jimmy. He is my “gem” – a rare jewel above and beyond those who boast of their manhood. You want a man? Here you go. My man washes all the dishes in this house – I physically cannot reach my sink. My man washes all the laundry. I can’t even reach the knobs. He washes and dries and brings them to me and I fold. The children put away. My man brings me a cup of tea every morning. My man helps me cook meals and put things in and out of the oven. My man loads and unloads a wheelchair in the sunshine, the rain and the freezing cold. I have a lot of trouble regulating my temperature now so my man will sweat so that I won’t be cold. My man will physically put me to bed when I am too tired to make the transfer. Although I have now learned to be independent and do almost everything, he will do things for me anyway just to make my life a little easier.

Why would my Valentine do these things – knowing that this is it? For good. Permanent. No getting over the flu here and being normal again. Why? Why would we fight so hard to not only survive in our marriage but to desire it to thrive? Because this is love. A giving of yourself unselfishly as Christ did for us. This is keeping a promise that we made to God and to each other 12 years ago. “For better, for worse, in sickness and in health, to love and to cherish…”

The Battle of Independence

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“It is a good thing that I did not become paralyzed, I would enjoy it too much and lay around and do nothing.” These words, or some like them, have been echoed to me many different times since I became a paraplegic. I always give a smile and say, “No you wouldn’t” and think that I am right. Whether I am or not I don’t know. This battle for independence. I think some of it does depend on your personality but a lot of it comes from an inward drive where your body knows you can never be totally independent, but your heart says “watch me try!”

I was thinking about a man that I know. He has some mental handicaps and although he lives alone, he requires monitoring and assistance with daily challenges. His guardian was talking to me about how stubborn he can be. I know this man and I know she is right! He desires to make decisions and be in control but he just can’t quite do it. That must be frustrating.

For myself, I know how very hard I push to do everything by myself. I always tell my husband that he better let me do it all now because when I get old, someone else will probably have too! I don’t want “pushed”. I am capable of doing that myself! I don’t want you to get the door for me. I can open a door for you and get in myself! I don’t want you to help me get in a car. I can do it so please leave me alone! I don’t want you to carry me up the stairs. It must somehow be easier to get out, pull my body up step after step and arrive at the top justified that I did it all alone.

I may have accomplished those things by myself, but I was probably foolish doing it. I am all for being independent, but I would have thanked you for opening that door when I was walking so just what am I trying to prove? Before I sound vicious, I want you to understand that I don’t ever tell people to stop pushing me, get out of my way, or put me down. I smile graciously and thank them. It is just the thoughts inside my head that I am now confessing to!

I can get from the floor up into my chair by myself. I have swam a little excessively this week so my back and upper body are in quite a bit of pain and worn out so I couldn’t get in my chair last night. I had a friend nearby who I asked to give me a boost. It killed me to have to ask her! This was something I could do – and I had to have help!! The thought of being dependent, of needing help, was really hard on my independent spirit!

I find a fascinating correlation between this and my spiritual life. You know, there are some things that God requires of us – a sort of spiritual independence. He says to “choose you this day whom ye will serve.” Hey, that’s up to me! But then He offers His help saying “I will bless them that bless me.” He says to “Be strong…” – I can handle that because I think I am tough! Then it says “…in the Lord” – now that’s a different story. That puts my strength in being dependent on Him. We are told that the great King David of old “encouraged himself” – see, grab yourself by the bootstraps and get with the program! Then it says how he did that “…in the Lord.” That involved dependence again. Philippians 4:13 says “I can do all things…” – we like that don’t we? But then it finishes with “…through Christ which strengtheneth me.”

You see, my friend, this battle of independence goes beyond my physical challenges. It affects my relationship to God also. I am given an independent choice to serve God, to trust God, to stay faithful to God, to rejoice in the Lord, to surrender my life, my plans and my wishes to my Maker. Yet through all of those independent choices, there is a realization that I can do none of those things without depending on God and allowing His strength to compensate for my weaknesses.

I desire to be independent in my daily life. I desire to do everything I can without anyone else helping me. I desire to live as normally as I did before my wheelchair and I became partners. But I also realize that there are times that this just isn’t realistic and I will have to feel dependent and “less” as a person and I need to learn to be okay with that too.

So, it is in my spiritual life. I desire to trust God, to be strong, to have faith, to serve without question, to be okay with a less-than-perfect body and all the complications that go with that, and to keep on smiling without a quiver. But sometimes this isn’t realistic either and I find myself weary, fearful, questioning and grumbly! This is exactly the point that I am reminded that I am not spiritually independent for without Him I can do nothing!

May God help me to surrender in the battle for independence and depend on Him!

Snow!

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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!

Stand!

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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! 

Broken!

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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!

Be Still

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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.

I Pity The Puppets

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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.