For Beauty Alone By John Muehlhausen

For Beauty Alone

By John Muehlhausen

Who is this boy? What will he become? Will he be the pride of his sports team? Will he excel at his studies? Will he teach others the mysteries of his profession? Will he change the world with the next technological marvel? Will he fall in love? Will he help care for a family? Will he lead the nation someday?

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Will he, at least, be a productive member of society? Will he be of any USE?

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This is my son. I have big dreams for him, but he is facing a mountain. He has Phelan-McDermid Syndrome. His mind doesn’t seem to hold onto things. He cannot speak, and chances are he never will. His understanding seems extremely limited and inconsistent. His development is considered “scattered” — he retains behavioral aspects of a six-month old.

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He is a beautiful child though… at least, I have tried to show us his beauty in these photos taken over the past year. I do not focus on the occasional biting, or the hair-pulling and pinching, or the potty messes, or the nasty things that find their way to the mouth. I do not focus on the manic, sleepless nights, or the complaints of discomfort that he cannot explain or identify to us. I have passed over the seizures from poor body temperature regulation or from sleeplessness, which thankfully have subsided with management. I give little time to whether he will be “productive” someday. I do not focus on these things because there is a person, Jesse Roland, who is beautiful, and that is what we should see, and that is what we should believe when sight fails us. Jesse… “from the stump a shoot will spring up.”

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Jesse is a very physical and tactile person. He loves to climb, feel and explore. He has very little sense of danger, and he is fast! He will be faster than me soon, and I will mourn this for reason of his safety, but even more I will rejoice with him as I see him running and smiling.

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It is somewhat rare to make a solid connection, and I mean among people in general. Jesse is so real — he has no masks. He has nothing to hide, and this is beautiful. Beautiful people give their lives to work with people like him. These people are “best friends”… other children often do not have the patience for mental disability. This patience is rewarded with genuine connection: the art of loving.

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We live in a culture that values utility. We cringe when we see disability and we want to distance ourselves from it, and I believe this is because we have lost our sense of beauty. Perhaps Jesse can help ease us back to our senses. I am grateful to have begun my photographic journey with him and with his siblings, they are in a sense “easy subjects.” I am painfully aware that there are many disabled people who seem less photogenic at first, but who are no less beautiful for those who have trained the eye to see. Yes, the trained eye (of the soul?) can find beauty even within human suffering. During this past year I have wrestled with myself for believing that, but what other choice do we have but to learn this wisdom? At the end of our years, we will all be disabled and dependent, and still so beautiful. What is the meaning of life? To be beautiful, to be art and lovers of art, to be valued as ends, never as means to some other end. To be useless.

Let all of our uses of things (never people) work to showcase this art!

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Thanks to Steve for being willing to host this photo essay. Blessings to all. From Jesse through me, with love and for beauty.

Please consider making a generous contribution to the Phelan-McDermid Syndrome Foundation if you feel so moved. Let us help people like Jesse for their own sake! Please include a note that your contribution is “for beauty.” Thank you very much, I would be so grateful.

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29 Comments

  1. Very kind of you to care for those with special needs such as myself(autism adhd). Thank you!

  2. This is a touchingly beautiful photo essay. To learn that there is beauty in human suffering is difficult indeed, but so necessary. Love and blessings to you and your beautiful family.

  3. Beautiful story and pictures! In our sinful world, there are a lot of dishonesty, wickedness and greed, hatred discrimination, envy, murder, quarreling, deception, malicious behavior, and gossip. Only in your son’s world, you can find peace, love and purity. There may be some challenges in our life, but we can find love and
    and peace through God..

  4. I have worked with adults with Autism and have learned that we must value each human being as something beautiful with promise and possibilities -your photos are really wonderful and they really express that idea -so they are for me the most beautiful photos ever posted on this site!
    You have a wonderful beautiful child to love and care for . I know it’s not easy ! Thank you .

    Best wishes.

  5. A moving and touching story, accompanied by beautiful pictures, showing the love of a parent for his child, and a beautiful child it is.

    Thank you for sharing this.

  6. Good pictures. Go ahead and celebrate every good picture and every success.

    Society is obsessed with productivity, but it is an egotistic and selfish concept. Are used car salesmen (or stockbrokers, or whatever) being “productive” when they are profiting off other people’s losses?

    And what, exactly, do reality TV stars “produce”, anyway? Entertainment? Distraction?

    There are lawyers in New York who spend all day helping corporations avoid liability for their mistakes. “Productive” is not a term that I consider to be the highest compliment.

    Michael Vick is paid more than I am because he is better at football. That does not make him a better person. We are not judged by our gifts, we are judged by what we do with them.

    The prisons are full of people who were born with perfectly functioning 22q13 chromosomes. They are “nonproductive” by choice, mostly.

    Enjoy the time with your son, do the best you can for him, and keep taking good pictures.

  7. I am so glad that you have been able to find photography as a tool to capture and show the beauty in this child. A beauty that is pure because it has never been altered based on circumstances, never been faked, never been manufactured, a beauty that usually you can only find in much younger children and then it is lost.
    Your photographic skills either by training or naturally is the perfect tool to capture this purity, “BRAVO”.
    I hope that your photography also be a remedy to help you to deal with the obstacles of daily life in this situation.

  8. Thank you for sharing the photographs and your story which proves that there is always someone worse off than ourselves no matter how we are feeling. You are wonderful parents as you can see from Jesses face and the care you give him; and I am sure you will know that we all who read will this be thinking of you.

  9. Beautiful photos and a moving story. My step grandson was diagnosed with Autism and we had the tough journey and what ever problems he has is more than made up by his love, laughter and his joy of the world. I can see that you feel the same way about your son 🙂

  10. I’m crying. Watching your photos, reading your text, it’s very moving. Love and beauty, tranferred by photography. Thank you, John. Love and power to you and your family.

  11. Very beautiful and very moving: thank you for sharing the pictures and such an important life-experience.

  12. Wonderful stuff.

    Please remember it has been shown time and again
    first people to ruin a child are parents
    then school.

    When these are guarded against, then a child can reachfor the starts,
    then as an adult fulfil potential.

  13. Beautifull pictures and very well written! I am fortunate to have two sons as well, and stribe to get pictures like you have here, capturing the moment! Technically very good as well, but these would be just as good if they had not been, because they tell the story so well!

  14. Thanks, John, for a truly beautiful set of pictures and for a glimpse of both loving and loved souls. It would be trite to say that with such a thoughtful and caring father Jesse is bound to be alright: there will be enormous hurdles to climb over. But at least he’ll have a real chance of climbing them with you there to give him a leg up and share the journey, tough as it may be. Good luck.

  15. Awesome photo essay…you have truly captured the beauty of your son. The images stand on their own as wonderful compositions but knowing the story behind them magnifies their poignancy immeasurably. My heart goes out to you, your son and the rest of your family…

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