So Busy Fighting The Battle That I Missed I Am Succeeding

I have said before I started with health issues at the age of 32 and am now 63 and will be 64 in May. I am a fighter and I was determined that this would not take my life from me and have stayed in fight mode so long that I did not notice that I was succeeding.

Each day I get this side of the dirt is winning and I have managed to stay on this side of the dirt living life, enjoying my life and trying to help others during hard times for 32 years. At times I feel like I just started with all the sickness and then other times I feel like all my life I have battled. But, what I have missed is that I am succeeding in a huge way..32 years of succeeding.

I do not believe in holding on to the hard times in the past or the things that made us cry because if we are still crying a year, ten years, twenty years, thirty years later….we never dealt with it and all we are doing is holding our life back..and recreating the pain over and over and over again when we hold on to it like that.

On the days I feel like I am too tired to keep going, I look back and see how far my fighting has brought me and how I am still living life even if I am fighting chronic pain and chronic illness. And to be honest, I never thought I would be here at the age of 63. I figured my health would take me much earlier.

Some have asked me was all the fighting, determination, grit and refusing to give up worth it. Not only is the answer to that yes but “oh hell yes” it has been worth it. I have gotten to enjoy my sons and my grand baby and my loved ones and family all these years. I have gotten to experience things like Italy…even on crutches..and coming to Colorado and fulfilling one dream…to live in the mountains. So, yes, it has been worth it.

When your battle..no matter what it is, starts to wane on you…look back and see how long you have battled it and how far you have come in spite of what you have battled.  And rejoice in the succeeding at keeping going through the hard times. No one said life would be easy but it sure is worth it.

Headed to Surgery Center

We are headed out to the Surgery Center. My cataract surgery is at seven-thirty.  They said I would be there a little over two hours.

Also reminder, please help us by voting. We really need that van. It would make life so much safer and easier for us and make these trips less painful for me. Thanks to all voting.

MOBILITY AWARENESS CONTEST FOR MOBILITY VAN

 You can vote every day until May 3 by going to this link  http://www.mobilityawarenessmonth.com/entrant/deb-oliver-walsenburg-co/

Thank you ….love Deb and son

Me as you know me with MOJO on

Do You See Past The Cover?

I was reading a blog this morning that sparked this blog. It always amazes me how I can read something and instantly my words start to form in my head. This story is especially good and I hope you will go and read it. It is about helping a friend and wishing a friend for us all.

http://cauldronsandcupcakes.com/2013/03/07/fear-of-crossing-roads/

This blog made me think of how I am always saying I am Deb…I am not my diseases. And yet, many will look at me and see nothing but my disabilities or my chronic illness.  And I am sure many that are chronically ill can identify with this.

I have to wonder though how often we do that in general and not just to the disabled or chronically ill. Do we look at the homeless and only see that they are poor or dirty or wearing ragged clothes and never see the person inside all of that? Do we look at the blind and not see what is inside that face and mind that holds so many treasures to tell? In general, do we look at the exterior and never take the time to see what is going on or what is the real story?

I have become fascinated with the documentary “Grey Gardens” and what has fascinated me is that so many have watched this documentary and very few come away with the true story. They only see the dielapidated and dirty house and all the cats and raccoons messing it up and do not see these two strong and talented women who are survivors. They come away making comments about how filthy they are and how dumb to watch the documentary and miss the whole point of the show. It is sort of like the person you ask to read something you wrote and they start correcting your grammar and punctuation instead of reading the content and miss the whole story.

I have watched these documentaries over and over and come away with something new each time. I see a mother and daughter dynamics and their ability to adapt and entertain each other to survive all those years on very little money in the middle of the Hamptons with all the rich family around and no one comes to help.

I see a daughter who kept her dream alive by putting on performances day after day for thirty to forty years…can you imagine? And she finally got her dream to perform in New York.  Was she a famous singer then? No, but she finally after all those years of living in squalor was able to say she got to perform. And a mother who kept her daughter by her side by continually encouraging her to do these matinee performances in the house where they were recluses. The mother was almost 81 when she died and after she died, Little Edie left that house and moved to New York where she did get to do her  singing and dancing.

And yet, many people could not see that they were survivors, could not see their sense of humor, could not see their ability to adapt to some horrible conditions, .could not see that this was two women who came from times where servants did all the work and they were never taught to clean or take care of a home so did not have any comprehension on how to do it, could not see Little Edie’s unique sense of style that she created herself…they never looked past the first clips and saw the news reports and the pictures of a dilapidated house and trash. And they judged these two women and the documentary on that.

And so, I wonder-how often do we walk down the street and pass judgment and never look to see the real person. How many people on the street do you glance and walk past thinking they are strange or dirty and never look into their eyes and really see them. If we never take the time to look at people, we will not see anything but what is on the outside. We will not know that this person who seems so rude just lost a family member, or that person who rushes by really has lost their home. Or that this woman who recoils from you has been raped and is terrified, or another person is afraid to be alone. All these things make us who we are and yet we do not take the time to look for the person behind the facade and see that in others.

video by Adamfulgence

How often do you speak to those you see? How often do you jump to judgment without even knowing why a person is behaving the way they are?  And if you say never….better go take stock again because we all have. We have all at some time in our lives looked at people and said “boy they are crazy” and the truth may be like the blog by my friend above…they are not. They just need a friend.

I have a friend that did that. I could be so sick that I could barely even lift my head or read on the computer laying here but would not tell those around me via internet, etc how sick I was and she would know. She would instinctively know by how I typed. She listened and she really cared. It was not fake concern. It was real listening and really caring about another person. It was truly wanting to know how they were.

And today people are so caught up in the busy busy world and never take the time to look at the people around them. I have had strangers when I reached out and touched their shoulder and said “I am so sorry you are hurting so. I am so sorry for your loss” and they asked me how I knew and my response was  “because I have been there.

We have to reach past ourselves and our troubles..that is how we get through them each day. If we reach out and help someone else, our troubles seem to dim and life seems a little brighter. But, if we focus only on “me, me, me” and portray ourselves constantly in a pitiful light, life seems so hopeless. It is a choice on what we choose to focus on.

If I want to inspire someone, I try to let them see me overcoming….not succumbing to my hurdles. I show them me fighting to keep going and crossing hurdles not me slumped in my power chair. I let them see me doing things I have not been able to do before I got the power chair, not all the things I can not do because I am in a power chair. And because of all these things I have been through…I pay attention to those around me and I notice the hurt and the pain others have and their joys and triumphs and I try to reach out to them because most of us know what those things feel like.

The Ramifications of Helplessness in The Chronically Ill

The ramifications of helplessness in the chronically ill is a very sensitive topic and one that I hope I can do justice to. I have many times talked about how the chronically ill must grieve every time a part of their ability to do something on their own is lost and then comes the need for acceptance of where they are in life. Probably the hardest thing to accept is helplessness.

Helplessness comes in many forms and we give up personally when we are helpless to do whatever task it is that we want done…whether it be something like tending to one’s own personal needs or trying to plant a few seeds in a pot or fix your own dinner plate or even wash your own hair, or we feel helpless to deal emotionally with some event in life. No matter what it is, unless one is in the exact same place, it is hard to understand what it does emotionally to the person that is helpless.

image from www.lushquotes.com

I have lost the ability to do many things. I tend to focus on the positive and to try not to dwell on what I have lost but there are moments where we feel such a sense of frustration and loss that it can bring us to tears. I have tried to work on something lately and can not do it alone and yet can not get anyone to help me. It makes me feel impotent to carry out this task and leaves me feeling defeated. I have to fight these feelings for they can take over if we are not careful.

The ramifications of helplessness in the chronically ill are the person losing the desire to keep trying, the person becoming filled with despair, and  the person feeling  frustration and loss that is as big and black as looking into a big empty volcano hole and the one that is feeling helpless feels like they are falling head first into that black hole.

“To my mind….. the more helpless the individual, the more it is entitled to protection by man from the cruelty of man.”  

Gandhi

I have had people tell me that they would do this or that  for me and they mean well and it is nice to have the help but most people are totally clueless about the devastation that comes with becoming helpless. They are cavalier about what is happening to us, which makes us feel minimized or diminished.

As I normally do, I am going to use myself to explain and to paint a picture that I hope helps others to get a glimpse into what it means. I am helpless when it comes to putting my shoes on. I can no longer bend my legs up close enough that I can put my socks or shoes on. My son has to do it for me. I can not wash my back sitting in my shower chair and so my son, after I get wrapped in a towel, will reach in and scrub my back.

When I had the radio frequency ablation, I was helpless to change the bandages that were on my back  which was extremely embarrassing because the lower spine ones are down below the waist of my pajamas. But I must have it done and son is my caretaker and so he does it. I handled well losing the ability to cook and having someone else fix my food for me because I still have the ability to feed myself.

Helplessness equates with dependency on another and none of us really like to be dependent on another person for our most basic needs. There are so many things I want to do and dream of doing. I want to take my photographs of the clouds and put them in a book and yet I am helpless to do it alone. I want to put my blog posts in a book but the helplessness comes from the exhaustion of trying to cut and paste and get it just like I want it. And I fight the urge to just give up.

Image from www.care2.com

Yes, you all know me well and I wear my mojo and I refuse to give up but I want to use myself so people can maybe get just a small look…a flickering of understanding of what helplessness is like even for strong people like me. And some have told me “oh I know. When I broke my leg, I was totally helpless”.  Yes, that is true that a person with a broken leg is helpless to do many things. But the difference in someone with an injury like a broken leg and someone with an incurable chronic illness is that the broken leg will heal and the ability to do will return whereas a person chronically ill will continue to lose the ability to do things.

I am writing this because I want others that are not chronically ill to maybe get where they can look at us and see we are not just lazy or just do not want to do anything. We are really ill and in many aspects of our lives, we are helpless. We fight to keep going and to not lose the ability but it happens. I am also writing this because I want those that are around us to look and not take things out of our hands if we are taking too long to do it but to look at us and say “can I do anything to help?”   And if we are at the point we can accept help we will tell you yes.

I remember someone who is a reader of my blog telling me how she was trying to get the snow off her car and she just could not do it and was standing there crying in despair and frustration at the feeling of being so helpless. Helplessness has many ramifications. It can strip us of our dignity. It can strip us of our fight and determination. It can throw us into the pit of despair and make us quit fighting to keep going.

And when those around us look at us like we are just not trying or we are just lazy, then it causes us to pull into ourselves and we become isolated because we just can not take the judgment. One of the most important things for a person chronically ill or disabled is to be able to accomplish for our own self-pride and to do things for ourselves as best we can. This may mean we do not do the kind of job you would but just doing the job can make us feel pride in ourselves. We have to learn to praise ourselves and be proud for ourselves when we accomplish something and we do not depend on the words “I am so proud of you” coming from others. For what happens when that person is no longer there?  We are always with ourselves..

Please stop and look at us sometime and see our grit and determination but also see the tears that helplessness brings and step up and gently say “can I give you some help”.  That would mean the world to us. My aunt that I call “Mama” fell in a parking lot one time when it was summer and the black top was boiling hot. Not one person came over and asked her could they help her as she struggled to get back on her feet. She walks with a cane and has spinal problems like me. She had tears streaming down her face as the helplessness set in and her hands burned every time she put them on the black top to try to stand. Looking around she could see people just watching but no one…no one offered to help. She finally managed to get herself up by hanging on to a hot bumper until she could pull herself up and slowly walk until she got into her car where she sat crying from the helpless feeling and burnt hands and knee. And that memory seared deep into her heart and the fear of being helpless has really set in.

We are not contagious. We are not lazy or just faking. We are people with chronic illnesses…some that you can not see if you look at us but that are slowly taking our bodies and as we lose more and more of the ability to do, that feeling of being helpless…of being dependent on another begins to hover over us and we have to learn how to accept the reality of what is happening to us and know that our lives are changing in ways we never dreamed would happen. And when we need help and keep asking and no one is willing, the ramifications of that helplessness are staggering especially as it grows and we become more and more helpless in other areas of our lives.

People ask me how I handle this. I have my moments where I cry in frustration. It is not bad to feel frustrated or down about it….it is how you allow those feelings to dominate your life that matter.  I might cry and then I shake my fist at it and say “you are not going to win” and sometimes beating that helplessness involves asking for help.  We have to be willing to ask. Life is full of things that batter us and we may cry in frustration or pain but then we have to pick ourselves up and say we choose to not let the loss destroy us. It is our choice to decide how we are going to feel about our lives no matter how they are.

If You Are Willing To Die For…Then Be Willing To Live For

“If you would lay down and die for someone or something, then why won’t you live for them?”

Dr. Phil

Wow, what a powerful statement. All of us have someone or something that we would lay down and die to protect and take care of and yet at the same time, some of us do not live for that person or that passion. We are emotionally absent from their lives. We are willing to lay down and die for others but not willing to fight for ourselves to live to be there for them.  I am going to talk in terms of Chronic illness or being disabled but I think you can apply it to any life.

I have fought health problems for so long. When I first started getting sick, my fight was to make it until my kids could take care of themselves. And then after that, I seemed to lose that fight for my health. I would still fight to protect and defend those I love but I was not fighting to survive my health issues and disabilities because I felt like I was not important enough to fight for. And a person chronically ill should be their first defender.

It takes a purpose in life to keep fighting…a hope…a dream.  At the time my boys left home, I felt like I had lost that purpose and so just succumbed to being sick.  And it took me a long time to realize that if I was willing to continue defending and fighting and supporting my sons and those I love, I had to live for them too. I had to embrace my life and be accountable for what I do and did. I had to be there physically and emotionally and live life so that they were part of my life.

We can not control many things in life but we can control what we do…how we handle them and how we accept responsibility for what we do and do not do in life. I realized one day that I was worth fighting for too. What a revelation that was to me because I did not think I was worth fighting for. I also realized that if I did not fight for myself , neither would anyone else.

I realized that I have to live..for myself and for those that I would fight for and defend and protect. If I am living my life to the fullest possible for me, then I am giving those I love and care about and that love me…the best gift possible and that is me living to my fullest potential and happiest in their lives.  I am giving them me present in their lives not just physically but emotionally.

Ask yourself sometime…do I give others my best behavior and not those closest to me..those that I love so dearly?  Am I allowing my life to be less than it could be? Am I hindering myself from actually living life instead of just existing. Have I put a cocoon around me to keep from being hurt and without realizing it I have shut those I love out?

Living life means being involved in what is around us, interacting and enjoying those around us, accepting what has happened to us in the past and letting go.  It means being present in life, not just a shell that floats through doing nothing, giving nothing and more or less a shadow. It is easy to retreat when we are chronically ill, disabled, emotionally spend, tired…etc.  And we are just a shadow in our personal world and in the world of those we love.

If you are willing to fight, die for someone or something, then be willing to live for them too. Be willing to take life with all the mixed bag of things that come. Yes, there will be bad times and we just have to tolerate them. Living life means letting ourselves feel all ..good or bad…and being present and active in what is going on.

YES, that is hard sometimes. Sometimes we just want to hide in our rooms, pull the covers over our head and drown out any sound of those around us. But, that is not living life. I have learned that even though most of my time is spent on this hospital bed in pain, that I can still be accountable and present in the lives of those I love. I can try to hide from anything negative or sad and even hide from how sick I am but what happens when we do that is we put a paper shell around us that is easily fractured.

Being present in our loved one’s lives, fighting for ourselves can be done even if we are laying on a bed, laying on the couch, not feeling well, unable to get up and do the things others can, being home bound, etc. It can be done emotionally and allowing others in and fighting to stay here for them. It means fighting to live so that we can still be here for those we love. Yes, we might not can go to all their events. We might not can go out all the time. We might can never go out. But, they can come to us and we can lay on the couch and we can enjoy them when they are here.

So, my question today is…are you willing to fight to live ..for the things or the people who you are willing to fight and even die for?

You May Be….

“You May Be [Chronically ill, disabled, blind, deaf, poor, jobless, homeless, etc}..

But It Is Your Choice To Be Useless"

I heard this quote last nite on television and it actually said "you may be blind but it is your choice to be useless" and I was blown away by it. I know, I know...there I go again with the choice word but life is full of choices and sometimes we make bad ones and sometimes we make good ones and thank God, we can still make choices. But, when we choose to label ourselves as useless and quit trying, we are sealing our fate.

image from quotes-lover.com

I have heard disabled, chronically ill, homeless, etc people say that about themselves and it simply does not have to be true. I have met the most honorable people, the most talented people and caring people who were homeless or poor or disabled...whatever. Those are situations or things that happen to us but have nothing to do with what is in our hearts and mind...our souls.

I believe this quote fits  life in general. We may be poor, without a job, homeless, arrested, chronically ill, disabled, blind, deaf and the list could go on...that may be out of our control, but it is our choice in deciding we are useless or pathetic or whatever.  And when we opt to choose to label ourselves useless, pathetic or any other adjective, we are making a choice that not only affects us but those around us.  And choices go both way. We also have the choice to decide that we are here for a reason and have a use in life.

When things happen to us in life, they do not just happen to us but to those that love us and care about us. When someone loves that means they care about what happens to the one they love...they are invested in them.  And when we choose to place a label on ourselves that diminishes our very being such as useless and pathetic, those around us are affected. We teach people how to treat us by how we treat and think of ourselves. If we think we are useless...so will other people.

Those labels are placing new dimensions on our character and our soul and can become self-prophesying. No matter what happens to us, we are here for a reason. We do have a purpose. Life may have changed  but that does not mean it ends.

image from thetrevorproject.tumblr.com

Allow the mantra..."I may be [insert word that fits you] but it is my choice to be useless” to run through your head. As long as we are alive, we can think, we can smile, laugh, cry and communicate with others, we have a use. No matter our situation in life, we do have choices. They may not be the choices we planned for ourselves but they are choices.  Life is a choice and our choices can mold what our life is like.

Using Things To Make Life Easier

POSTED BY SON:

I am always amazed when I get out of my house and things are not handicapped accessible like I am used to and I find that these things make our lives so much easier and yet people will not use them because they think it makes them look old or whatever.

My parents would not use handicap things like the handicap seat for the toilet and hated the walkers they were supposed to use. My mother wanted them kept in the other room. When asked why? Their response was “it makes us look old”.   They were 83 and thought the people in the assisted living were old people, not them. And so, both my parents fell, broke a hip, had surgery, developed MRSA and died. All because of pride.

Maybe because I was disabled at such a young age…in my early forties and really disabled in my thirties but did not get on disability until my early forties…that I handled having handicap things better. Having the handicap toilet, the grab bars, the utensils with bigger handles, higher hospital bed bed, power chair, forearm crutches, remote control lights, etc all make my life easier. And when we go to the doctor or have to stay in a motel to be there for medical things at the hospital, I realize just how much easier that these things make my life.  They help me save my energy so that I have the energy to do things I enjoy and to be with my loved ones and enjoy them.

Son is so awesome at handicap stuff and is always making or fixing things to make it safer for me or to make it easier. For example, on the door frames going out of the house is a grab bar so that I can hold on to it to answer the door. There was a grab bar right beside where the coffee pot was on the old cabinets that son just pulled out so that I could hold on to make my coffee. The little shelf was a telephone nook and low so you could sit on a stool but because I was standing to get my coffee, he raised the little shelf up.  He removed those big bulky cabinets to make it easier for me to get around in my power chair that I am having to use right now and will probably have to use more and more as time goes on.

Having a chair in the shower and a handheld shower nozzle is probably the most wonderful thing in the world because it does not wear me out to take a shower as bad. Before, just taking a shower meant a nap after I got out and dressed because it took all my energy. Son helped me shampoo my hair at the kitchen sing..and another nap before I could dry it and I never did both on the same day. And yet here I can with my new shower chair with arms on the side.

But, the hardest thing for people to accept is help when they start getting limited mobility. It does not have to mean you are totally disabled. It can mean that you get exhausted easily like from CFS or Fibro. It can be all sorts of things and there is no shame in using these things. It took me a while to use the scooters in the stores when I first became disabled because I was afraid of what people would say. Before I got a hospital bed, son put two mattresses stacked so that I did not have to sit so low to get up and down. And then I learned that it did not matter what people said. Those that loved me and knew I had problems would understand and those that were not willing to really see the real me really did not matter. What mattered is taking care of me.

I learned to keep things in every room to save me energy of which I have precious little. I had notepads, ink pens, lotion, reading glasses, a fleece cover, even a brush in case someone showed up…all by every place I would use in each room. Why?  Because it saved me a trip to get them. People who live on two floors should do the same on each floor to cut down the trips up and down the stairs.

I have had people tell me that they could no longer get on the computer because it hurt too much to sit at the desk and yet when I would suggest moving the computer to the table by their recliner or by their bed, you would have thought I was crazy and they would say “I am not ready for that yet”.  What are they waiting on? To be so bad that by the time they are “ready” they will not even be able to enjoy that?  Think of the joy they could have now if they conserved their spoons now and used ways to conserve their precious energy.

Look on the side of my page here and you will see my hospital bed with my computer monitor and flat screen tv. I type laying on my  back with the keyboard on a pillow on my stomach. It allows me to continue having online friends and social interaction plus doing something I enjoy BUT had I not been willing to use an easier method…I would not be doing this. Assistive methods mean just that…ways to assist us and to make things easier. They are not something to be ashamed of. They do not make us old or look old. It is making our lives where we can enjoy more in spite of the things we have wrong whether it be limited ability or totally disabled.

And it comes back to that word I preach so much…choice. It is our choice. We can choose to use things to make life easier so that we do not use what little energy we have or we can choose to let pride rule us and we make life harder and that in turn takes life away from us. I realize how much it helps me to use the things available, to change my home to help me no matter if it no longer looks like a Good Housekeeping Home or like everyone else’s home.

And I have learned that it is important for me to do the things I can do for me and if people do not understand, that is ok. That is their problem, not mine. My problem is to take care of me, to make life easier for me which in turn makes life’s good moments more frequent.

Update on Renovation

 

The contractor came and made a list and measured so he could order all the handicap stuff, the shower, pedistal  sink and handicap commode and measured the storm door to get ready for the ramp. He said it takes about a week for the handicap stuff to come in and that he should be starting the next week. All I can say is thank you Lord and thank you for the prayers.

It was hard to explain to someone who is not disabled or chronically ill why this hurt me so. It was treating disabled, chronically ill, and seniors as if they were not important. It was an attitude of making it where I could take a shower or helping another senior have a new porch and ramp because theirs was so rickety it was like it might fall in and other jobs for the disabled and chronically ill…were just not important. It diminished me and diminishes others like me and made me feel unworthy and I had to fight hard to not let it do that to me.

Those that are disabled and chronically ill can tell you that it is hard enough losing part of the control in your life and depending on others and not being able to do for yourself a lot of things. But, then to be treated like second class people is devastating.  I have had people tell me in the past that we disabled and chronically ill should just get over losing control in our lives. And my experience has been that those are the very people that will have the hardest time when they get where they can not do because they think that is so easy to do. It is a pervasive attitude with some people concerning the disabled, chronically ill or seniors and it is sad that people do not take the time to try to understand.

And it showed me how much the prayers affected this situation when the man told my son that he was lucky because the job he was doing now…not a COG job for the disabled…just a regular construction job…when he told them that COG wanted him to start now and explained what the job was, the person the work was being done for told him to go ahead and take off and knock this job out at my house. It says to me that the power of prayer is very strong and it also says that the man the work is being done for has a heart and cares about disabled and chronically ill and seniors and is willing to let them be taken care of first. I know God will bless him for that too.

 

Related articles

• Through The Eyes Of The Chronically Ill or Disabled (workthedream.wordpress.com)
• Chronic Illness Is A Roller Coaster Ride (workthedream.wordpress.com)
• Chronic Illness Tip: Pick your support system carefully (theadventuresofarthritisnfibromyalgia.wordpress.com)

 

I Wonder…..

Do people stop and think before they say things and when they are talking ugly about children especially…with disabilities or deformities ….that they are talking about someone’s child. They are talking about a child that the parents love dearly in spite of the deformities. They are talking about a child that could have been any of us.

I remember when Juliana Wetmore was born. Her birth hit the news…the child born with no face. She was the worst case of Treacher Collins Syndrome ever. She had no face at all. And yet her parents took this baby from day one and loved her and told her how beautiful she was and they never stopped to even think maybe she should not have been born…..not once. And yet people are so cruel as to suggest that this child whose only “fault” lies in the fact she was born with no face should have been terminated before birth.

The parents and surgeons have done everything possible to help make her face more normal. She has had surgery after surgery and this child is one resilient child. She is just like every other child inside. She wears a ballerina suit and dances, she goes to ball games, she goes to school and nothing seems to stop her. I so admire her parents. They have tried to be the best parents possible for her and to let her know just how loved she is.

So, why is it then that some people must make such ugly comments?  Why is it people can not change their mental image and see that this is a child just like your child and mine. The only difference is…she was born with no face.  She is growing up and they are still doing surgery on her and she is a happy child…thanks to some unbelievable parents. I can not imagine what this child has endured to have her face worked on and yet look at her…happy and a child.  Isn’t it amazing how much more accepting children are than adults. They have put balloons in to stretch her skin so that they could make her jaws. She has worn these horrible looking metal braces on her face and jaw and yet…she goes on being a child who plays with toys and friends and who laughs and just lives her life as a child.

So, I wonder…do the people who point and stare…who make ugly comments…or who say she should have been aborted and other comments…do they even stop to think that they are talking about someone’s child…a child who is loved dearly?   Would they want someone to talk about their child like that. And I have to wonder…how can they not see the beauty in this child with all she has endured and she is still smiling and happy? Her beauty just radiates from the inside out.

We are a world obsessed with outer beauty and yet most people fail to see the inner beauty. I look at this child and I see her strength, her love, her child like joy and her determination. I see such a beautiful child.  Many children would have suffered drastically from the way others react but her parents and family have made sure to counter that with all the love they can give.

The world focuses on looking young, on having Botox and plastic surgery, on trying to retain your youth and yet how much work do most people do on making their inner being beautiful?  How much money do they spend on learning how to be a person of character, virtue, integrity, honesty, love, compassion, etc?

The following is a video about Juliana. It is graphic for it shows her from birth on up. They are doing wonders to create a face for her and she has come a long way. And she has a way to go. But whether her face is operated on anymore or not….to me…this child is beautiful and has taught me much about acceptance and about what is important in life.

video by izzybella50

and one more:

video by tipookhan

When I look at all this and see the ugly comments, it reminds me of not too long ago of the hateful person who asked me since I was so sick had I ever considered euthanasia.  My reply to her was “no, not once and evidentally my life was a lot happier than hers in spite of my health for that thought has never entered my  mind and it has hers.”  And I say…happiness is within us. It is not in what we own, who we are with, what we look like…it is in our hearts and Juliana Wetmore is the best example of that I have ever seen.

Sometimes Winning Is Not The Most Important Thing

This was an email story sent to me by a friend but I loved it for it demonstrated a wonderful point. That sometimes, doing what is right is much better then winning. I do not know if this is a true story or not but the message makes it worth reading. People ….children…decided that helping someone was more important than winning and because of what they did….they were the biggest winners of all by their actions. I loved this because in a world that seems filled with so much greed, hate and ugliness, the actions in this story were so beautiful. I found myself tearing up at the part where they started cheering this young boy on.

At a  fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: ‘When not interfered with by outside influences, everything nature does, is done with perfection.

Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?’ The audience was stilled by the query.

The father continued. ‘I believe that when a child like Shay , who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.’

Then he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, ‘Do you think they’ll let me play?’ I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, ‘We’re losing by six runs and the game is in the eighth inning. I guess he can be on our team and we’ll try to put him in to bat in the ninth inning! .’

Shay struggled over to the team’s bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted. In the bottom of the eighth inning, Shay’s team scored a few runs but was still behind by three.

In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands.

In the bottom of the ninth inning, Shay’s team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat. At this juncture, do they let Shay bat and give away their chance to win the game?

Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn’t even know how to! h old the bat properly, much less connect with the ball. However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay’s life, moved in a few steps to lob the ball in softly so Shay could at least make contact.

The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher. The game would now be over.

The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game. Instead, the pitcher threw the ball right over the first baseman’s head, out of reach of all team mates. Everyone from the stands and both teams started yelling, ‘Shay, run to first! Run to first!’ Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.

Everyone yelled, ‘Run to second, run to second!’ Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball . the smallest guy on their team who now had his first chance to be the hero for his team.

He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher’s intentions so he, too, intentionally threw the ball high and far over the third-baseman’s head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, ‘Shay, Shay, Shay, all the Way Shay’

Shay reached third base because the opposing shortstop ran to help him ! by turning him in the direction of third base, and shouted, ‘Run to third! Shay, run to third!’ As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, ‘Shay, run home! Run home!’ Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team

‘That day’, said the father softly with tears now rolling down his face, ‘the boys from both teams helped bring a piece of true love and humanity into this world’. Shay didn’t make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

It is all about choice. I say this a lot. We can choose to be people of honesty and integrity and compassion or we can choose to be people who think only of themselves and winning.  I prefer the first choice. How about you?