Sunday, June 2, 2013

A Taste of Immortality


 For the past couple of months now, I've been trying in vain to sell several items on Craigslist. Aside from an unused inflatable queen-sized air mattress ($100) and my old gold and diamond wedding band ($175), I have an ad for four "funky-cool, nearly new chartreuse metal barstools," and though I've had a couple of bites from legitimate purchasers, most of the responses I've received have been lame efforts at phishing. When I originally posted the items, I made the mistake of including my numeric phone number. That resulted in me receiving a polite text message from someone inquiring about the price of the stools in plain English, someone who really sounded interested. I texted back and we agreed upon the price; no haggling involved. Yay for me. 

When I specified  that I was to be paid in cash, though, the transaction quickly revealed itself to be nothing more than a thinly-disguised scamming attempt. First, I'm asked if I'm familiar with PayPal. Then, I get this lengthy explanation about a shipping agent needing to come pick the items up...blah, blah, blah. Restraining myself from what I really wanted to say, I TM'd that asshole back, saying, "No thanks, I wasn't born yesterday."

When I told my son, Rory, about this interaction, he informed me that I needed to spell out my phone number in the ad, instead of listing it numerically. Apparently, numbers attract scam artists and bots. I've since changed my "404" to "four-zero-four" and dropped the price from $225 to $200 on the barstools, but all I've gotten is a few redonkulously low ball offers. Rory tells me I just have to be patient and keep renewing the ad. Yesterday, I did receive a reasonable offer on the inflatable mattress from someone named Sylvia who lives just down the road in Grant Park, so I guess Rory was right about being patient. It took a minute, but in the end, every minute counts, n'est-ce pas? Unless, of course, you're someone who believes in the concept of wasted time.

   
BearKnuckle (L to R): Nick, Donny, Willie, & Rory
For those of you who don't know, my 22 year old identical twin sons, Rory and Nick, are musicians in a local Atlanta rock band. BearKnuckle's original music is probably best described as metal and blues-infused psychedelic grunge. I really love their sound; so raw and energetic. Spartacus and I try to attend every local show, not an easy task for us 50-plussers, unless they're the opening act. When BearKnuckle headlines, the guys rarely go onstage before midnight! The band is comprised of Rory, who plays bass and sings backup vocals, Nick, guitarist extraordinaire, their best friend from high school, my son-from-another-mother and supplier of lead vocals, Willie aka Fune Williams, and remix-entrepreneur, Donny Dey, on drums. When Rory, Nick, and Willie initially decided to form the band, they didn't have a drummer. Craigslist to the rescue!  Fortunately for my boyz, Craigslist proved itself instrumental in drumming up a percussionist; no pun intended. Donny responded to their "drummer wanted" ad, and BearKnuckle made its debut in the summer of 2011. 

   
On the road, livin' the dream....
Rory writes a pretty cool blog for BearKnuckle. His posts range from band-related updates, such as songs they're working on or a glowing local review of its newly released EP (Lost Woods), to music-theory driven rants about no-talent techno pop and the declining quality of music to Rory's personal insights on how and why he came to love music. Last night, I was checking Facebook on my iPhone on the way home from a nice dinner out, and noticed that BearKnuckle had new post. When I saw the title, "Black Lungs," my heart felt heavy as a brick. I knew Rory had written a song about having cystic fibrosis (CF).

Whereas I've written extensively about Nick and Rory's life with CF, this was the first time I'd seen it addressed publicly by him. Contrary to popular misunderstanding, cystic fibrosis is NOT cerebral palsy. People with CF are not mentally handicapped or neurologically impaired. Cystic fibrosis is an inherited genetic disease of the lungs and pancreas. A defective cellular ion pump causes an imbalance of salt and water in the body's mucus-producing glands, resulting in thick, sticky secretions that clog up the lungs and pancreas, creating a susceptibility to chronic, debilitating pulmonary infections, an inability to properly digest essential nutrients, and infertility. Some kids with CF spend most of their lives inside the hospital, receiving intravenous antibiotics and tube feedings. CF is one of the major indications for lung transplantation. The survival curve for CF is still measured in median age at death, which is somewhere around 40. Even with major advances in therapy over the last 20 years, the disease is still considered terminal. Parents unknowingly give their children this disease. In our case, there was no family history, and prenatal screening wasn't available; the gene for the CF mutation hadn't yet been discovered. One in 25 individuals is a CF carrier, and two carriers have a 25% chance of having an affected child.  

Nick, breathing easy on tour
For people with CF, every breath counts. Most of us never think about breathing; it's largely effortless and involuntary. Imagine what it'd be like to cough constantly, sometimes so violently that it brings up blood, to struggle for your breath. Not only is breathing itself labored, it's an effort that's accompanied by an unrelenting awareness of one's own mortality, perhaps the heaviest of all realizations. In his blogpost, Rory wrote about his inspiration for the song:

"This is the first song I’ve ever written about having cystic fibrosis. Most of the time, my writing deals with overall depression and dealing with talking to my subconscious. In most of my lyrics I am just talking to the voice inside my head. Telling it the things I don’t like about it. The deepest meaning that came out of me in writing this song is how long it took me to really embrace having CF. For many years of my earlier life I really didn’t take my health seriously enough. I can easily allow
Rory, doing his respiratory therapy in a hotel room
myself to become distracted and really overlook asking myself, “Do I feel healthy?” This awareness really came from having multiple hospitalizations for lung infections in a short period of time. It showed me how much I need to love myself and embrace myself and this disease. So this song is not a song about wishing I didn’t have an illness. It is a song about embracing the illness and becoming okay with it. Music is my drive behind my life, if there wasn’t music I don’t know what would bring me the same amount of joy in life. I feel like music does heal me. If your soul isn’t intact….how can your body be?" Gulp. The lyrics for "Black Lungs" are compelling...it's Rory talking to himself out loud:

  A better way
I see a better way
A better way
Please just look this way
At me

Better days
I’ll bring you better days
Better days
Won’t you leave this way?
Follow me

The words I say
Won’t cause you any pain
If I should stay
Would you ever change?
Lay with me

When your life’s gray
Find me at the place
I’ll be the same
This is to remind
Breathe with me

A shallow pain
At first it felt okay
Turning away
Nothing ever changed
Die with me

Rearranged
My life slipping away
A new face
Lends a helping hand
Fight with me

Taming my heart
To change what I see
Play my cards right
To help set me free

Finding my place
Brings new confidence
Building a start
Live to see the end

It won’t be long
My mind is gone
We’re going to fall
I’m breaking down

From what I saw
I’ll walk the halls
With one last call
I’m breaking down

Gasping for life
Fearing your every worry
I’ll try to fight
Holding my memories closely

This time it’s right
Learning to live with your face
Turning the page
Willing to clean off my black lungs

   
Rory & Nick, channeling Kurt Cobain
I fell asleep after reading his post, wishing I could hear him sing the song. I had a strange dream about traveling through the midwest, doing something medically related, and being gone for a very long time. The last place I visited in the dream was St. Paul, Minnesota, which is where my mom was born. I've never been to St. Paul before, and I woke up just as I was arriving there. I got up, fixed myself some coffee, and opened up my laptop. Sometime during the night, Rory had sent me a message saying that BearKnuckle was contacted by a guy named Josh who hosts a cystic fibrosis podcast, JoshLand Unfiltered. He wants to promote their music. Through the wonders of social networking, Josh came across Rory's "Black Lungs" blogpost on BearKnuckle's site. I'm guessing this transpired as the result of my friend and former anesthesia colleague, Lou, sending me a link to Emily's Entourage, a non-profit organization dedicated to raising CF awareness. One of the site's featured CF "warriors" was an 18 year old female drummer, also named Emily. I congratulated Emily on her fund-raising efforts (May was Cystic Fibrosis Awareness month), and told her about Nick and Rory and their band. She wrote back, saying she was going to check out BearKnuckle, and I believe she is the one who contacted Josh. Here's where my weird dream comes in. Get this. Josh's podcast is based in St. Paul! Crazy coincidence or synchronicity? You be the judge.
     
     
The ring that popped my Craigslist cherry
As I was sitting outside with my dogs, I received a phone call from a guy named Stan who told me he was interested in buying my ring. He offered $125 cash, and said he'd be over in an hour to pick it up. In the meantime, I chatted with Rory via messaging about his plans for the day--he's going to the zoo with some friends--and about his blogpost. He sent me the mp3 for "Black Lungs," which I promptly downloaded and listened to. Hearing Rory sing this song was ironic and beautiful. The music is old-school grunge, Nirvana-esque with a haunting dissonance that comes from Rory's use of E flat minor 9 and 12 chords. "That's very jazzy of me," he boasted, jokingly. Show off. He's a freakin' genius when it comes to music theory. Jazzy, grungy,  or whatever genre it falls into, it's the perfect backdrop for such heartfelt lyrics. 

An hour went by, and sure enough, Stan called to say he was en route to pick up the ring. I'm pleased to say that my maiden Craigslist transaction went very smoothly. I never would've gotten $125 at a pawn shop, plus I'm allergic to yellow gold, something I discovered shortly after I started wearing this ring. Now, I'm waiting patiently to see if Sylvia will still be coming by after her 10-5 pm class to pick up the inflatable mattress for $75.

Patience hasn't always been one of my virtues. I used to hate it when my ex-husband, Nick and Rory's dad, injected "Let's wait and see" into a discussion. My impatience rivaled that of Veruca Salt...But, I want it NOW!!!!! In a sense, I wasn't too far off the mark because now is all we've really got. Back then, my now was material: things I wanted, things I had to have, things I thought I couldn't live without. Having kids with CF changed all that. Nothing's more precious than the immaterial now, and I guard it selfishly. Resentments? Expectations? Pffft. Talk about  a waste of time! I thought back to my earlier chat with Rory:


Why should adulthood be any less carefree?
How unfair is it that 22 year olds like Rory and Nick, who through no fault of their own happen to be sick, have to spend ANY of their precious now, worrying about access to healthcare in our so-called civilized American society? It's absolutely scandalous. Lots of young people today, regardless of their current state of health, are choosing careers based upon the availability of an affordable insurance plan. How insane, no, how uncivilized is that?! The solution is simple: a publicly-funded single payer system with universal health care coverage for every American citizen. As you might have guessed, my views on this matter don't make me very popular with my peers in medicine as well as some of my friends, but as far as I'm concerned, they've got their heads up their asses. I'm impervious to and intolerant of their silly fear-based arguments about the "horrors" of socialized medicine. But, I suppose it's precisely the kind of attitude one should expect from a nation of profiteers and impatient patients, from people who aren't willing to think for themselves. We've definitely created a monster here, a real Veruca Salt so to speak. I find it interesting that none of my Canadian family members or American-trained physician friends who practice there has EVER complained about Canada's publicly funded health care system. In fact, they feel sorry for us! Ok, enough ranting. It sure feels good to get that off my chest.

Rory & his upright bass, Ruby.
It's now 6 pm. Sylvia came to pick up the air mattress, and we stood outside for awhile, having a friendly conversation. All in all, a very good day. I'm quite satisfied with my Craigslist experience, despite the false alarms and phishing, but it's not because I just sold a ring I haven't worn in over eight years or an air mattress I've never used or because it's been some kind of insight-arousing exercise in patience. My satisfaction actually has nothing to do with me at all. It comes from seeing my sons so happy, playing in a kickass band born of a shared passion for music, long-standing brotherly love, and a healthy dose of ingenuity, the randomness of which was moderated by Craigslist. I'm ecstatic that Rory is distracted by his music. As far as I'm concerned, he's right where he should be, livin' the dream, following his heart, rocking out in the immaterial now where this ripe, juicy moment, this sweet breath, this intoxicating morsel of happiness indulge him in something most of us take for granted: a taste of immortality.


BearKnuckle's website and blog
BearKnuckle's EP (you can listen for free)...good stuff!
Josh's CF website, Welcome to Joshland
Emily's Entourage

BearKnuckle's blogpost and lyrics used with permission of the band.

27 comments:

  1. It is horrible the health care in the US so so bad, what a state the richest country in the world is in, even now I live in Thailand which I believe is still considered the third world, and they even have universal first rate healthcare, however its for citizens only so I do not qualify. I would seriously consider moving elsewhere.

    I enjoyed reading about your Craigslist adventure.

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    1. Believe me, Scott, there have been times I've considered moving us all to Canada. Americans have been fed a steady stream of politically charged garbage regarding universal health care coverage, and a lot of people have just stopped thinking for themselves. It's criminal that families are going broke because of medical debt. We could do SO much better than this. As for Craigslist, I'm cautiously optimistic. I've had two good interactions so far. Now, if only I can sell these chairs!

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  2. Sounds like you have nothing to worry about b/c I also think he's where he should be. IF someone is doing what they love best then how bad could that be?
    I say...>Good for him and great that you support what he's doing!
    I'm glad you had the time to vent here on your blog. :)

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    1. I agree, Angie. My sons really appreciate the fact that their Dad, Brad, and I support them in their current interests. All too often, I think parents view children as extensions of themselves, micromanaging their lives from infancy through young adulthood. Maybe I have a different perspective because I did not do the traditional 4 years of college after high school. But, I wouldn't trade my experience for anyone else's. Yes, venting felt very good.

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  3. Yes, 'patience is a virtue' they say, and 'all good things come to those who wait'. I'm exactly the same. I like things to be done and dusted and I don't like to wait too long. But from experience I've learned that sometimes you gain nothing from being too fast. It's good that you got a buyer for your items, and glad you had Rory around to give you the heads up on what you needed to do. Children come in handy when it's tech stuff, don't they Helena? Ha, ha ha.

    It must have felt weird to be reading what your own son has written about his life with CF for the first time. I know you are a close family, but to have him write down his own feelings, I think I would have been nervous to know what he would say, whether it was good or bad. Whenever I read here about CF is really brings it home to me how important life is. I had severe asthma so I'm familiar with knowing what it's like to gasp for air and now I know what it's like to freely breath again.
    Helena, do you sons come across any issues with smokers when they have a gig? If so, how do they deal with it? In London we now have no smoking policies but I'm not sure how it works in America.

    Oh, as for the American health system. I would be bankrupt with all the treatment I've had in the UK. I'm always so shocked how anyone survives if they become ill at your end. I've heard stories of how people had good decent lives one minute and because they suffered an illness they are now broke with nothing and I mean 'nothing'. It's shameful.

    When I've got more time I will go over and have a listen to BearKnuckle's music.

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    1. RPD, the boys have taught me quite a lot about navigating the internet, as well as using various software programs. It's so easy for them because they've had exposure to it all their lives. Definitely comes in handy! It was weird for me to read what Rory wrote; very emotional. I wish I could have posted the demo to "Black Lungs," but it hasn't been mixed and mastered yet. The boys do play in some smoky venues, and they always feel it afterwards. It actually affects one's ability to sing, so they always have water onstage. Most bars, outside the City of Atlanta, have no-smoking policies. For some reason, voters approved smoking in venues inside the city. I guess they were worried that no smoking would mean less revenue. I hate going to smoky bars; makes me sick, and I detest having the smell of smoke in my hair and clothes. It is shameful that our system permits its citizens to go broke from medical debt while the healthcare CEOs reward themselves with lavish bonuses. Profiting from other people's misfortunes seems morally and ethically wrong, especially in health care, but many Americans believe that's better than having universal coverage. Makes me want to pull out my hair and scream, "What is WRONG with you people???????"

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    2. Craigslist was instrumental in drumming up a percussionist? Yeah, you can't beat it although sometimes you have to stick it out.

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    3. Isn't that crazy, SFG? But, yes, there are good musicians to be found on Craigslist, amidst all the overpriced crap people are trying to peddle.

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  4. I never tire of saying medicine and education have become a mafia in India. Guess the US, that paragon of Capitalism, has its share of problems too. What I have gathered from Robin Cook is rather scary but here you are and your twin sons, amazing folks in flesh and blood, and you confirm so much of that pulp fiction.

    Black Lungs is a poignant and pregnant title and the lyrics do ample justice to the same. Shifting focus to the silver linings, the podcast from Saint Paul and the success at Craiglist the same day, I am forced to think of miracles. And that is what I am wishing fervently to you, Rory and Nick and their band BearKnuckles.

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    1. Uma, it's about as bad here as it is there, maybe just in different ways. Just today, I took my mother to have a procedure done, and heard a man talking on the phone about having to pay $750 for an MRI, and that's WITH insurance! I thought "Black Lungs" perfectly encapsulated what it must feel like to live with CF. Rory didn't always take his health seriously, and that's why he had so many hospitalizations in a short period. He learned from that experience, and that's what matters. He's doing great now! I think you're right about those strange coincidences being miracles of sorts; yesterday was a special day.

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  5. Kris, sorry your sons were born with such disease. I have breathe problems so I know how difficult it is. And your son's worrying about future at this age seems to be perfectly understandable. However, as Angie said, he is doing what he likes, so he should be in good place now and future. Plus, they have a loving mother stands right behind them!

    Glad you had good experience selling items in Craigslist. I sold quite many things there too.

    Talking about health care, I feel the exactly same way! I cannot afford insurance. But since doctors did not help me before, so I don't feel that desperate. But I do agree, that the basic health care should be free for everyone.

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    1. Yun Yi, I was thrilled to finally have success with Craigslist. I have a lot of stuff that I need to get rid of, stuff that's barely been used. If I can't sell it, I can always pass it down to the boys or give it away on freecycle.org. I've learned a lot about life from my kids, so if one can ever consider a disease a blessing, it would be within that context for me. I hope that things will improve with our system over the next few years so that access to healthcare never has to be one of my sons' worries.

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  6. I know how much my heart hearts when my kid gets a nasty scrape on the knee. I can't imagine what you go through every day. I'm so glad your boys are living fairly normal lives -- following their musical dreams and enjoying what they have. And congrats on your Craiglist success! Those bar stools are dang cool. I'm sure they'll go soon. And, DANG! Had I known about that ring...I love diamonds. Glad it went to a good home. :)

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    1. It's been very tough for all of us at times, Janene, but thankfully most of the time, life's been pretty "normal." I think that's part of why I'm so supportive of them following their hearts and playing music. They've never used their CF as an excuse to get out of responsibility which I think is pretty commendable. As for those bar stools, I love them, but when we downsized to a smaller living area, there just wasn't any room! I guess I will lower the price next week. I'm tired of them sitting out in my living area! I got a great deal on that ring...I tried to pawn it a few years ago and was only offered $50. Too bad I'm allergic to yellow gold, or I would have had it reworked into another piece of jewelry.

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  7. That's a post that hit all sorts of interesting places along the way. Beautifully done.

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    1. Thanks, Big D! I kind of rambled, but I think it all came together cohesively in the end.

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  8. Kris, I love how you can seamlessly weave so many diverse threads together in a single post-Rory and Nick's music, CF, Craiglist, the health insurance mess here in the US, etc. It shows how everything in our lives and in the world are tied together in ways we can't even imagine. Talking of beautiful things, your relationship with your sons has to be placed on the top of the list. The depth of a life should be as important, if not more, than its length. I don't see any evidence anywhere of wasted time.

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    1. It's funny how it all came together in the end, Marty, proof of that interconnectedness you've alluded to. I really do treasure my relationship with Nick and Rory, and feel so lucky to be their mom. I agree about depth of a life being as or more important than its length; that's why I think it's "now" that really matters.

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  10. So good Kris.
    Great kids, with a special mother.
    `...Music is my drive behind my life...'
    It's about priorities, making the most of things.

    I know what you mean about attending gigs as `50-plussers' - dropped in to see Bill Callaghan last year, & he didn't come on until after midnight!

    Cheers, ic

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  11. What an incredible post, Kris, covering several issues that are in many ways related, and you wrapped it up beautifully. Awareness of one’s own mortality is indeed “the heaviest of all realizations.” What Rory wrote in his blog post really moved me. Writing about how he’s finally embracing CF, loving himself and embracing this disease, is such a powerful statement. I agree with him about music, I believe it does heal.

    Rory’s “Black Lungs” lyrics are compelling, just remarkable writing. I can only imagine how you must have felt as his mother reading it. Through those words, you can really see how for those with CF, every breath, every minute, is so precious.

    Kris. I don’t think your precognitive dream about the city of St. Paul was a coincidence at all. I think it’s because of your closeness to your sons. Good news about the music promoter. Btw, have no idea what E flat minor 9 and 12 chords is but if it’s jazzy, I like it! Please post the music for “Black Lungs” when it’s ready. Nice photos of your sons and the BearKnuckle band. I especially love the one of Rory and Nick when they were young, playing so carefree (what cuties too!).

    Wholeheartedly agree that they should not have to spend any of their “precious now” worrying about access to healthcare. Yes, we need a single-payer system with universal healthcare coverage! The late Sen. Ted Kennedy was a tireless advocate for single-payer and tried in vain for years to get universal health coverage thru Congress. Canada and the UK are excellent examples of what works. The fear of “socialized medicine” in this country is based on...nothing! Not based on any real facts. Fear-mongering about it is just another way to protect profits and the big healthcare and pharmaceutical lobbies. Thank you for your rant; I appreciate and support it!

    Re: Craigslist: good job getting those things sold. We once put an ad to sell furniture on Craigslist and got that same scam about PayPal and the shipping agent. No way would we fall for that! We did eventually get a legit buyer. I was not aware of spelling out your phone number on those ads to avoid scammers and bots. Thank you, Rory for that valuable information!

    Went to the BearKnuckle link and listened to “Rite of Passage” great song! Also really like the artwork on the “Lost Woods” album cover. How cool that they found their drummer on Craigslist.

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    1. Madilyn, There is no doubt in my mind about the healing power of music, either. I'm so glad my boys have such an outlet, something that's so sustaining. I agree about the precognitive dream not being a coincidence. I've had dreams of a similar nature before and feel that they're the result of deep interpersonal connection. I will definitely send you a link to "black Lungs" when it's ready. You'll like it! The album artwork is done by a friend of the band's named Asya Austin. She's very talented! I love the fact that Craigslist helped them find their drummer. Drummers tend to be very difficult to find! Thanks for checking out BearKnuckle's site. I'm really excited for them to get exposure on Josh's CF podcast.

      The only professional society I don't "have" to belong to (it's sort of required to belong to your specialty's national and state level organizations) is Physicians for a National Healthcare Program. They support single-payer universal health coverage. It's amazing what a struggle they've had, getting heard in Washington. I completely agree with what you've said about how fear of socialized medicine in this country is ill-founded.

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  12. Beautiful, emotional, powerful, musical, educational, political.....I'm exhausted in a good way. I went to the BeaerKnuckle site and you have much to be proud of. I'm so happy for both you and your sons that you have the relationship you do.

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    1. Thanks, Gina, and thanks for checking out their site! I think they've got a groovy thing goin' on. I feel very lucky to have such wonderful sons and to be a rock'n'roll mom.

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  13. It's great that you support your sons in every aspect of their precious lives. It always sounds as if you have a very strong relationship with both of them. I find it facinating that they have triumphed over so many hurdles and still find the "will" to carry on and do it all over the next day. You have something to be very proud of in your boys!

    Now that your cherry was popped with Craigslist, what's next? Trust me, it's like crack, after your first time you will always be looking for the next time.

    Keep up the great writing Kris, it's always a pleasure to read!

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    1. Haha, you know I'd just about given up on Craigslist. Then, BOOM, this weekend, everything came together with it. Now, I just need to sell these barstools. I agree with what you've said about the boys' tenacity and determination. It comes from within them, nurtured and encouraged by supportive friends and family. I couldn't imagine my involvement in their lives being any other way.

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  14. Kris, such a wonderful post. Your love is so evident in your writing about your son! I agree with NP, and enjoyed the way you tied everything together. You are so talented :) I wish I had the courage to venture into the selling venue on Craigslist or Ebay....fear is holding me back :)

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