beautiful boy
K__. He is 24. He weighs 85 pounds. His case is severe. A pump runs through his body- it relaxes his muscles. Muscles that would otherwise be permanently flexing and twitching. He also has a metal rod running up his back to keep him from curling up. He is completely mentally functional. He comprehends everything. But he is unable to control his mouth, throat, and tongue- rendering him completely incapable of speech.
His face is perfect. Classic Greek male beauty. Strong looking. Perfect nose. Skin. Eyes. Lips. Jaw. Chin. He even has thick neck... Its the largest muscle on his body. My favorite is his smile. Its glorious.
He's 24. I'm 23. He humors me. I sing to him. Do accents. Dance. Goof off. I love to suck up to him, kiss his cheeks, and tell him stories. And he's right there with me. Soaks it up. Laughing loudly at my idiotic notions and stupid jokes and listening sweetly to my stories.
I shower/bathe him. I usually end up soaked. So I guess we bathe together. Usually for 30-45 minutes. Its one of the only times in the day when he can relax (well, except for one part of him that is doesn't always care to relax... Its understandable).
Last time was different. His (handsome n' single) older brother dropped by. K__ and I were in kitchen going about our usual greetings. I was about to take him to his bedroom. His brother was anxious and excited to talk with me. I didn't think much of it. I tried to keep it short and proceeded to take K__ to bathe.
He'd completely changed. He was ignoring me. I didn't know what was up. He'd never been like this. I quickly undressed him. I knew the shower would cheer him right up.
I turned the water on and put my hand beneath the detachable shower head. I ran the warm water over his body. His muscles flexed. He turned his head as far as his muscular neck would allow it to turn... then with all his strength and concentration, he tried to cover his nakedness. With the other arm he tried to push me away. He'd never acted humiliated like this. In my baffled state I checked everything... The water, his position, what the heck?
"Whats wrong Hun? Hey, relax gorgeous boy.... I'm here." I said in my soothingest voice. I kissed his cheek as sweetly as I could.
He tensed even more.
That's when it came. Whimper. He tried to hold it in, but it was welling up inside of him. I knew he wouldn't be able to hold it in.
"Ahhh, ah, ah, ahhhh...." His deep voice sobbed and shook his frail body. It was as if I could hear his heart bleeding.
My throat had an enormous lump in it. Tears began falling down my cheeks. I was trying not to break down. "Honey, please, please, please don't cry...." I'm desperate now and kissing his cheeks.
I try to attain eye contact. "I love you. And I don't care. I don't care what you think. I know you. You are absolutely perfect and absolutely beautiful to me. " I stared at him in the eye.
"Now I'm crying... please don't cry... you have no idea how beautiful you are to me... well maybe you do... I mean we do shower together... sgotta mean something." I giggle a little.
He moves his eyes onto me and sees me crying. The tips of his mouth go up and he gives me a forced half smile. He's trying.
He turns his head again. Tries to hold it in, but his cries break through. Its more than I can bear. I hurriedly run the soap over him and dry him off... hoping that maybe he just wasn't in the mood to shower.
I procede to massage his body with lotion. He usually loves this.
He turns his neck as he tries to hide his face from me. His nostrils are flaring. His face is changing color. I've never seen him close his jaw and mouth this way. His chin his so tight that its dimpled and quivering. Then I watch as silent tears make their way out of his beautiful green eyes and roll down his perfect skin and chiseled cheek bones. He doesn't make a sound.
I look at him. This perfect mind trapped in this crippled body. He is lying in the bed in front of me. His face solid rock. Eyes open. Tears pour down his cheeks. His body silently shaking with grief.
I wanted to break down. To just hold him and cry. I love this beautiful man more than I ever thought possible. He is my inspiration. He truly is beautiful. He can say more without speaking than anyone I've ever known.
And I leave him every time, hoping that someday I will see him whole. Because I honestly want nothing more and than to hear him speak or to see him walk or run. I can't imagine anything more beautiful.
He deserves it more than anyone. More than you, or me. More than you who are too proud and too lazy to know happiness. Too proud to do something with yourself.
Be grateful for what you have. Do something. Stop sitting there wishing things were different. Stop thinking about yourself and live (i'm talking to myself here).
Kenny is grateful for what he has. He'll never be able to talk, eat, make love, run, dance, or create a blog. haha. sorry. Yet he knows everything of it. I've seen him cry once. He smiles more brightly and more beautifully than anyone I know. If he's grateful, God knows you and I should be too.
I'll see him whole one day. We'll go somewhere beautiful. He'll tell me everything he's ever wanted to tell me. He'll be stronger than me. He'll take me in his arms and we'll dance like no two people have ever danced before!
posted by Sealegs at 4:09 PM
18 Comments:
That was the saddest, most beautiful thing I've read in a long time.
thanks for reading it ;)
Might be time to sign up word verification, huh? As dreaded as that might be- hate to see the mood of a wonderful post like that tainted by those spucking fammers!
Emily this was amazing. Your writing skills are incredible. The whole situation almost made me cry. What a beautiful tribute. I could feel his pain. You captured the moment beautifully.
Please give Kenny a warm hug for me. You are so full of kindness and love. I admire you.
thanks hun! seriously, if you could see kenny... he's gorgeous...
I had to revisit this post after thinking about it today, and comment on the actual post instead of just your spam situation.
Are you still puzzled at K's behavior? An opinion from a male perspective may help..
He's a normal guy, just like me and almost any other guy out there. He just happens to be saddled with some pretty severe physical limitations but inside he thinks just like any of us do, and I guarantee he thinks you're a beautiful, sweet, wonderful and desirable woman, who is of the perfect age for him and most importantly, shows him a great deal of friendship, love and respect.
You don't treat him as a freak and you don't patronize him- instead, you make him feel whole, and he loves you for it. I'd bet a whole bunch of money that you're the one he thinks about as he drifts off to sleep at night, and in his yearning for normalcy, he yearns to be with you. Would that be so preposterous? You already bathe and feed him in the course of your duties, would you not happily do so as a devoted girlfriend or wife? He asks this to himself everytime he's around you. He hopes more than anything that your devotion to him goes beyond his physical state, and that you're perhaps really interested in him AS A MAN.
Enter big brother- the handsome, whole one with the charming personality, who has had a parade of beautiful girlfriends over the years, which K has seen and can only imagine. No matter how nice they are to him, he knows that they are only there for his brother- and he feels a little repulsive by comparison. He has little to nothing to offer them, and there's a degree of frustration that goes with that.
You have called him "beautiful man", and kissed his cheeks. If you did that with me, I'd think you're really into me! He thinks you're really into him- until you meet big brother. At that moment, he knew that he'd lost you. You became just another one of the caregivers over the years and worse than that, you were one of his hopes that has now again been laid to rest by his brother's charm.
I realize you didn't show interest in his brother beyond just being friendly, but I'm just coming from his perspective- it'd happened before and now here we go again. It's difficult to enjoy the warm water of the shower and the company of a beautiful girl that one had longed for only moments earlier, when all of that longing has suddenly become futile and one is overcome by despair.
He didn't want you to touch him because of the conflict inside, and he certainly didn't want you to see the despair, but he couldn't exactly jump in the car and go for a drive to gather his thoughts. He was forced to contend with you drying him off and dressing him, but dammit you were NOT going to see him cry.
I've read some of your other blog entries and I've seen your profile picture, and you know what? You'd be pretty easy to fall in love with! You are seriously lacking in contemptible character and you're quite nice to look at.
Over the years, K has had young ladies kiss him on the cheek and tell him how wonderful he is, knowing full well that none would deign to commit to him in a romantic and sexual relationship, but maybe.. THIS one.. well, she's special! I hope my brother stays away this time.
Of course I could be wrong about this whole thing, but it's an educated guess- for years I worked as a caregiver to people with similar disabilities, mostly CP as in K's case. Trust me, they long for love, commitment, affection, romance AND SEX every bit as much as the rest of us. You said that K has his full mental capabilities, well- everything I've said goes right along with that.
It'd help to know if he communicates in any manner- a liberator? an eyeboard? does he just have signals for yes and no? Even if that's the case, if you see him again it'd be best to get everything out in the open and try to determine how he feels. It's also important to be perfectly clear and honest about your feelings. Don't be afraid of hurting him, he wants to be treated like any other guy you've ever known. I'm sure there are more than a few that you've had to give the "let's just be friends" speech to.
On the other hand, if you'd be open to it, I'm sure he'd love to go on a few dates with you! Show him that for once he gets to trump his bro! Seriously, there's a guy who'd never cheat on you and who'd be so hopelessly in love with you and devoted to you that the world just may stop spinning if things got any better.
Okay, I'm getting kind of silly now, but those are my thoughts on the whole thing. If you have any questions or comments for me, or just want to tell me I'm a lunatic, but want to do so privately, my email is daverhodester@gmail.com
Love your blog- you really are something! I'll be checking in on a regular basis :-)
PS- I see you enabled the word verification- such a shame, but you sorely need it :-(
Rhodester,
Thank you so much for your input. It seriously means a great deal to me. I haven't seen Kenny since he did this- about a week ago. I'm going to be seing him today.
It is very difficult. I love Kenny. I do. And so when I'm around him, I love to tell him about us and what we'll do someday. Stuff like that. I'm overly imaginative I guess.
I wish that I could be more to him, but I know it isn't possible. I know I couldn't devote myself entirely to him... at least not in this life..and perhaps this is what pains him so much the last time I was with him.
What should I do? Should I stop sharing my somewhat unrealistic dreams with him? Should I not kiss his cheeks?
Somehow I really do believe that I'll see him whole someday. In another life I guess. and its this belief that makes me dream about him in this way.
I'm really torn and slightly nervous to see him today.
Thanks for your insight and advice. It is greatly appreciated.
:)
and yes, i turned on 'word verification'
I guess I missed you for today's visit- I'd love to know how it went!
Here's the thing- the key word is NORMALCY. He wants to be as much like you and I as possible. Of course someone needs to feed him or he'd starve to death. Someone needs to bathe him or he'd be a stinky mess. The same with clothes- he doesn't want to go around nude all of the time, so someone needs to get him dressed.
BUT, in the way that he's treated, he wants to be treated as we all treat each other. If you were a friend of mine, and came over to see ME once a week (let's pretend I'm single.. and, younger.. haha!) would you kiss me on the cheeks a lot and call me a beautiful man? Probably not, even if we were really good friends. You might do it once in awhile, when I said something really profound or flattering to you, but probably not all the time.
There would also be a time that you and I would need to talk, just for clarification. Do we remain just friends? Do we take this to a romantic level? Kenny is entitled to the same thing.
In the 80's I was visiting Children's Hospital of San Diego on a regular basis, and taking a friend of mine, Rhonda, along with me. The residential ward is full of these kids and young adults who need fulltime care. Rhonda and I got to know this one young woman who was about my age named Karen. She had severe spastic CP and couldn't sit up- she was always prone on her back. They used a gurney to transport her, but mostly she was in her room on her bed.
She became our favorite person to visit because, like you with Kenny, she'd laugh at our jokes and she totally soaked in all of the stories we'd tell her. We all three loved our time spent together.
At a certain point, when Karen determined that Rhonda and I were not a couple (Rhonda was actually married to Mark, a friend of mine), she started dropping hints about she and I. Long story short- at a certain point she just came out and said she wanted to marry me. She could talk a little, although it was a struggle to understand what she was trying to say. But THAT day it was pretty clear- "DAAAAVE YOU AN I MARRRREEEEE"
Boy, I didn't see THAT coming!
I told her that we were friends and I wasn't looking for someone to marry right then. She cried, and it killed me. Then I did something that I've regretted for many years..
I never went back.
Rhonda continued to see her and would report to me on how she was doing. She had a surgery coming up that would enable her to sit up in a wheelchair, and although scared of the surgery (her 24th or something), she was excited at the prospect of sitting up.
Rhonda called me at one in the morning to tell me that Karen didn't survive the surgery.
This was 1984, and I've carried it with me all of these years, regretting my stupid desicion to stay away. I don't regret telling her I couldn't marry her and that we should be friends- I believe in being honest with EVERYONE- but I regret not actually being a friend after that.
I hope this helps you, because it's damn hard for me to talk about.
Tell Kenny exactly the way things are and how you feel, because he deserves that much. And since you love him so much, don't make my mistake and avoid him- just hang out and be a friend. But don't let him think for a second that you're anything more than that if that's the case, because it's not fair to him. He may be pretty upset over it at first (I know I would) but he'll settle in to being friends with you given time.
As far as telling him you'll be together someday- he wants to know "why not NOW?" Kissing him on the cheeks is up to you. I bet he loves it, but at the same time feels you're only behaving that way because he's severly disabled. You just need to think that over.
Remember to never treat him like a five year old- he's a grown man.
I'd love to hear an update on this if you find the time. I wish you well!
Wow... that is so sad. I'm so sorry.
The woman who trained me on how to care for Kenny, fell in love with him. She cares for him for free now even though she's an LPN. She's about 50. Sweet woman.. not so attractive. But she told me that he's her reason for living. So... Kenny has a weird effect on people i guess.
I just got back from Kenny's. It was soo... nice to see him.
His mother told me he was grumpy today and wouldn't smile for anyone. But when he saw me and when I took him to his room he completely lit up. huge smile. It made my entire day. I really do adore him.
When I'm with him I treat him like a friend. It comes naturally to me. I'm don't baby him. I did last time.. but only because he was crying. I've been trained. I know how I'm supposed to act toward my patients.
Its different with Kenny. It might sound weird, but I'm seriously attracted to him. Like, he has the sexiest face. seriously. its sexy. I honestly think he'd LOVE me to kiss his lips and neck and all that. And oddly enough, it doesn't sound all that bad to me. he's gorgeous. i'd like to kiss him. But I'd never do anything like that to him. In my position, anything I do out of the norm would be sexual abuse. I could get in serious trouble.
So on top of that.. I'm showering him and lotioning him. So he has an erection throughout my visit with him. And he looovves being touched sweetly and all. So its difficult for me to not want to satiate his desire. I see how much he loves my touch and affection.
The other thing that makes it difficult is that Kenny is completely incapable of communication. He responds only with smiles and with his eyes.
For example. Today, he was doing his own thing-making me feel like I'm talking to myself. So I'm like,
me: teasingly, "Hey, stop pretending that I'm not here. That you can't tell what I'm saying. I know you're listening to me..."
kenny: slowly begins to smile. his way off saying, 'yeah... you're right, i'm listening.'
me: "Seee....??"
kenny: big smile
me: laugh and shake my head
kenny: laugh
Sometimes he acts like he's ignorant to what I'm saying in order for him to feel comfortable with what I do.
Its complicated. He can be very expressive and listening one day and then not so much the next.
The only constant I have with him is him having an erection and he always stares at me when he thinks i'm not looking. its adorable... ahh.... which is why the time before last was absolutely crazy... he was totally trying to cover himself. he was embarrased. wouldn't look at me. he wasn't at all excited. it was madness.
I just wish I knew what he was thinking...
And then before I left today, I took him into the kitchen and was about to leave, when his kenny's older brother stopped me to talk and this and that. wanting to know if he can help me with this and that- stuff pertaining to my mission. and he's so attractive that its hard for me to not want to be reciprical toward him.
anyway... i don't know. and i'm blabbing here. but i'm so so grateful for your advice.
should i talk to his mother about it? he was fine today... maybe i just need to see how things pan out...
sorry this is so incredibly long. I appreciate all the input!
ps. i don't always give kenny kisses. i like to just put my face close to his, my cheek against his, my lips softly on his fact somehow. kinda sexy like... he LOVES it. he becomes crazy happy...
but is that bad? am i leading him on? i just wanna love him... can't i just give the guy a little love???
Well, OF COURSE he loves it! I mean, look at you!! :-0
All I'm saying is, be clear with him and don't leave him festering in a puddle of unrealized hope and dashed dreams. Just tell him that's as far as it goes. There's got to be a way he expresses yes or no, right? Ask him if he minds that you do that even though it won't go any further. You're leading him on if you LET HIM hope for more. You can give him kisses, which I'm sure he loves **sigh** as long as you don't lead him on.
Kisses- nice!
Leading on- cruel!!
That's all :-)
silly me- I just responded to your PS and not the whole report above it, which I didn't see until posting my brief little blurb. I'm at work tonight and have some duties to take care of- I'll respond more in depth later.
I'd really rather do it via email, since your getting personal about the physical attraction (which I have some insight on, but I don't know if you want me telling all of your readers about it too!) but if you'd rather keep it in this comment thread, I understand.
If you don't mind email, mine is daverhodester@gmail.com
I'm not a stalker or a perv- just a regular guy who's been married 15 years and has a lot of insight, particularly in Kenny's situation! Of course, I guess the first thing a stalker or a perv would say is, "I'm not a stalker or a perv.." heh heh!
I have to go do some actual work.. be back later
i'll email you so that you have my address.. i don't want my email address on this.
This comment has been removed by a blog administrator.
Thanks- mainly I want to point out some things about the sexual implications but it's not fair to Kenny to discuss this in a public forum, since we're talking about him in particular. Of course, he probably wouldn't even know about it, but that doesn't make it right.
One thing I CAN mention here is that I can't believe somebody hasn't pursued a way for him to communicate! There are so many options for disabled people these days, and you said that he has neck control- a DynaVox with a head switch would be fantastic- check out this young lady's website..
The biggest and most important thing for him is to communicate. If he could express his thoughts to you, his Mom, his Brother, the older lady caregiver- it would literally change his LIFE. Isn't there a local chapter of UCP or something that can help with this? As his friend, maybe you could be a catalyst for it! The young woman who's website I pointed you to is pretty much like Kenny, yet she's going to college and getting a degree.
I look forward to your email :-)
she's beautiful! this has me all hopeful. kenny would never be able to use this though... his hands are severely crippled.
this is what makes working with kenny so difficult. he is living far past what was expected for the severity of his condition.
the only thing he seems to be able to control without much effort is his smile. he can move his neck and arms with extreme concentration... and even with this concentration his movements are very spastic and unpredictable.
Sara doesn't use her hands, darlin'. She uses her head to trip a switch in the headrest of her chair. You may have a point that he may not be able to do that. I guess in 24 years the people around him must have tried SOMETHING, I would think.
It seems an eyeboard would work. Picture a clear acrylic board that you can see through and it has all of the letters of the alphabet on it, along with some commonly used words and phrases.
You hold it up in front of you so that it's facing him, and the letters and words can be read by him. They are backward to you, but you can see his eyes and his gaze, as he spells out a word, or looks at one of the common words. He only has to LOOK at it and you can see what he's looking at, so you call it outloud. Of course, maybe he's never even learned to spell? Hmmm.. in that case the eyeboard has symbols on it.
You said you often catch him looking at you. If he can do that, he can look at a letter, word or symbol on a clear board like this. You'll see what he's looking at and know what he wants to say. Best of all, this isn't something that would cost a fortune and have to be donated- you can put it together from parts obtained in a craft store and try it out for minimal cost. If it flops, no big deal.
Em, this is the most beautiful story. I would marry this man. I wouldn't care about any physical problems. I saw the most beautiful young man ont he Metro the other day, and he had CP, but he was gorgous. Had I not been married I would have asked him out on a date.
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