Through Jesse’s Eyes

My name is Jesse.  I was floating around in the cemetery earlier today.  I should do that more often.  It’s fun to bounce from stone to stone, seeing where some of my friends are buried.

I laughed and laughed at the dreadful things that were written on their stones.  I am absolutely sure that they were never consulted about what would be written on their grave markers.  Rest in Peace; Loving father, brother, husband, son.  Blah, Blah, Blah, Blah.  Decorated with pretty little angles and crap.

I didn’t laugh with my angelic celestial laugh. I freaking bellowed!   When I return home my departed friends will go crazy with laughter when they learn of this. You would not believe the rowdiness that goes on up here.  There was so much more to us than those lame epitaphs.

Anyway, I finally came across my stone.  I am looking at it now. OMG!  My parents got it right.  There’s an etching of me, stretching my arms into the air, shouting FREE AT LAST! I struggled for twenty five years on this earth.  Few people can relate, but now I am free.

Only my brothers and sisters with Cerebral Palsy can know what that means.  My body was so broken.  My family did all that they could for me.  My legs wouldn’t work right.  I struggled to bring my hand to my face.  My mouth didn’t work correctly.  It was so hard to swallow.  I couldn’t talk.  All I could do was moan with sounds that no one could understand.  I was blind.  I had surgeries to cut my muscles and stuff so I wouldn’t be in so much pain.

For 25 years this was how I lived.  I caught pneumonia every year because my immune system was weak from inactivity.  Every year I was in the intensive care unit, fighting for each breath.

I lived in my own world, trapped within a body that wouldn’t work, and few could understand.  My brothers and sisters who read this know how it is, don’t you?

I was blessed because I had a family who loved and cared for me.  I know it was difficult for them.  Dad, it’s ok that you didn’t come to visit me as much as some thought you should.  I know it was because it was hard for you to see me like that.  You felt such sadness.  I forgive you.  I am so excited for the day that you will fall into my arms and cry, knowing me for who I am, not how I looked.

Seth and Wesley, my dear brothers, cry for me no longer.  I am like you now.  There was a purpose why I was asked by my creator to live as I did.  I can see it now.  I can see all the people who were touched by my life, who grew to appreciate the bodies and lives that they had.

My caretakers learned to love in a way they would have never known.  I loved them.  I tried to smile when I heard their voices.  I caused people to think about their lives and how blessed they were.  There is purpose of which I cannot even speak.  You have purpose too.

My life was worth living.  I had significance.  I was loved.  I was needed.  With my spirits eye I saw his tears when dad made the decision to pull the plug and let me pass from that world to this.  You still have nightmares of that day, but I love you, dad, for letting me go.  It was time.  I am alive in the memories of those who know me.  I walk with you.

Now, I am free.  Free at last!

Jesse Bauer

20 thoughts on “Through Jesse’s Eyes

  1. Wow! Seeing that in print just flooded me with emotion. I cared for Jesse for 25 years. I love you. I miss you, son.

    1. Yes, he misses what he had with you Terry. He’s around you now all the time and although he’s not with you, he is free from pain.

  2. Thank you, Jesse. Your words have left a deep imprint in my soul. Sad yet joyed for you. May you soar the ether.

  3. I didn’t know Jesse, though I truly wish I had. I have no doubt he was a beautiful soul who was thankful to be given the gift to love and be loved here on this earth.

    The joy as well as the suffering he experienced in this world is not without meaning and purpose. Jesse now knows and understands his role in the Lord’s master plan.

    May Jessie’s family find peace in knowing one day, they too will know and understand the meaning and purpose for Jessie’s suffering.

    “Free at Last”… yeah, that is about right.

  4. What a testament to the human spirit, soul and heart. This story touched my heart.

    Terry I just love the way you accepted that your son was going to a better place, you must have tremendous faith and strength. I have experience in losing my son at the age of 24 and it’s an anguish I wouldn’t wish on anyone.

    Reading Jessie’s story is making me re- think and consider where and how happy my son is now and for that I am thankful. Brian.

  5. Thanks Brian. Very few people can relate to losing a son. I can, and my heart goes out to you.

    I am so saddened and angry with people’s responses sometimes. Sometimes, when people hear of the death of my son they are shocked and sympathetic. Then, when I tell them that he had CP, to some of them it is almost as if it makes his death more acceptable. They lighten up a bit. You know, “you must be so happy he is in a better place since he had this illness.”

    Fact is, yes, I am accepting of his absence. I know he is free now, but they need to understand something. His death was no less traumatic than any other persons death. I hurt no less because he had CP.

    His life was just as significant on this earth as is anyone’s life, and he is missed just as much as anyone, if not more so because of his unique touch upon this world.

    1. Many people struggle to find the right words when faced with consoling someone who has experienced the death of a loved one.

      Have you ever had to sign one of those cards that circulate around the office for everyone to sign? I must admit, I always read the blurbs everyone has written and end up shaking my head. Such canned phrases are used.

      I close my eyes and try to clear my head and write what comes to me. I know that words really don’t “comfort” someone, but I try to plant a thought in them that cause them for just a moment to think from a different angle.

      What I really want to do is just wrap my arms around them and let them fall into me and cry.

    2. Thank you so very much Terry for sharing your story about your son, from his perspective.

      It touched my heart more than you know. My son has a pretty severe case of CP as well. He’s 8 years old and in good health, thank the good Lord for that.

      But I totally understand when you talk about how he affected this world while he was in it, how he touched people. My son has that effect on every person he meets. He is just so pure and innocent. He is my whole world. I am dedicated to his happiness and well-being.

      Luckily, he hasn’t needed any major surgeries (except when they had to place a g-tube to help him gain weight), but he does have seizures and every time he has one it scares me to death because I never know if he’s going to be the same after that. I know you will understand.

      1. Although I have cerebral palsy and don’t have seizures, it’s the emotional ties that bind us together. I feel as though I know you and your son personally.

        Heather, with you by your son’s side I know he will thrive.

  6. Oh my dear Jesse, what’s it like to be free? Free to dance and soar in the ether, looking down on all who cared…? I’m still trapped in this broken body Jesse, living my sentence for life, oh to be free…

    So what’s it like to run and clap your hands dear Jesse, is it worth our sentence, and then to be free..? No more pain or embarrassment Jesse, oh what’s it like… what’s it like to be free…?

  7. Jesse, l think that you’re blessed not to be a prisoner in your body anymore.

    You have left resentment and bitterness behind and embraced forgiveness now. l hope to be like you when l also get out of my body. God Bless

  8. I’ve read this everyday since my son Billy was born on the 7th of June 2010 and it makes me so emotional. I’m happy and sad and everything in between.

    Billy has cerebral palsy and has not been given a long life expectancy. He is such a wonderful little boy and I can’t imagine life without him.

    I hope when he has to go that you are waiting for him and I hope he knows like you, how many lives he has changed and how much me and his big sisters love him.

    1. Thanks Sandra. Yes, I believe Billy is all of these things. I also believe that your son knows how much he has changed other people’s lives, just through what he goes through to live his own life, although he may not be able to tell you, he knows.

      Those who are in his life will have learned different values without taking their own lives for granted. I believe that Billy will have lots of friends and relatives waiting for him on the other side when it’s his turn to pass.

      He sounds a very special little boy and having you as his mother I know has contributed to that.

  9. Wow, this story really made me cry. I’m so sorry about the loss of your son.

    It is a huge loss and I can tell how much you are hurting and how unique and special he is to so many people and loved ones. I can tell how he changed other people’s lives for the better and enriched their lives everyday just by being alive.

    I hope you know that I think his life was very important and valuable, just as much as anyone’s, if not more.

  10. Jesse wherever you are now. I’m sorry you suffered while you were and hope you are happier and free of pain and difficulty now.

    This was beautiful and touching.

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