Wednesday, June 30, 2010

Thank You, Conner

This illustration is a special gift from my wife and I to the Jones Family. I am happy to share it with you here on Joshland. :-)

I know I can't stop you
from taking or using this drawing, but I certainly hope you will let it rest here as a constant reminder of my special bond with Conner.

~ Love, Josh

I wanted to wait until enough time had passed so I could truly reflect on and eloquently express my thoughts about my little friend Conner Jones, the loving and vibrant little boy who passed away on June 24th, 2010 from complications of Cystic Fibrosis and Prune Belly Syndrome at 7 years old.

Then I realized that there will NEVER be enough time.

This was one of my first blog posts that I wrote. It was shortly after a high school friend of mine passed away from cancer. I think it's appropriate to share today:

Hello long lost stranger,

I’ll never get used to seeing you. I can’t predict when you will appear, much less who you will take back with you. Is there something that will redirect your focus? Even though you make me wiser and appreciate all that I have, I wish you would stop hurting me, those I know, and those I don't. Please stop coming so early on in life and bringing the pain in tow with you. Come later, for instance, when we have been here for seven or eight decades and most of our lives are fulfilled. Come after we have said our goodbyes, made peace with those we’ve wronged and those who we feel have wronged us, seen what we’ve wanted to, and skipped what we didn’t. Come after we have loved and been loved. At least come after we have attempted to fulfill our dreams. I know that is not how the game works, but it doesn’t stop me from wishing I could change the rules.

Peace be with those who have passed away. May I have the honor of seeing you again someday. Until then, my memories of you – be they many or few – will ease the pain. I wish you happiness wherever we go from here.

Little special little buddy. We shared a brotherly connection even though we never spoke a word to one another. Through a puppet...a foam-rubber inanimate object...we formed a special bond. Your soul was so full of joy and love. You are in a beautiful place full of fire engines, Grover the Muppet, and Double Stuffed Oreos (only the filling :-). Giggles and smiles are mixed with tears, but have no fear. Our memories of you are the eternal flame of your life because superheroes are immortal. I will never forget the brief moments of your life that you shared with me. You are a better man than I will ever be if I live to be 100.

CONNER DID NOT LOSE HIS FIGHT. That would imply that the rules were fair and just. He won because he never quit in a battle few thought he would survive from the get-go. Everyone who lives each day against all odds will NEVER lose their fight against the evil.

Peace and love to Conner and The Jones Family. Just like my sister, Angie...LOVE is how he earned his wings.



Joshland Notes:

There is a big push for anyone touched by Conner's Story to write to the Today Show. While I am not in a place where I can emotionally do this right now, I fully encourage anyone who wishes to. If the Today Show responds, hopefully they will give the Jones Family proper time to mourn their son.

You can read Conner and his entire family's story through his mother Sarah's words at:

It is heart-wrenching and beautiful at the same time. It is an emotional rollercoaster that I honestly have a VERY HARD TIME READING. It has a lot of similarities to Angie's life. And yet...I read.

Here is an article from a Seattle paper that chronicles Conner's life and shares some emotional moments from his funeral. Very well done and touching. A sea of RED: Conner's favorite color. :-)

The Daily News Online - Hundreds celebrate life of Longview boy who inspired many

Even celebrities wore RED FOR CONNER:

Chelsea Handler wrote this on her Twitter Account:

And Regis and Kelly wore RED FOR CONNER on their show. You have no idea how hard this was for me to write on here because I find Regis EXTREMELY ANNOYING! That's a story for another time. :-)

Thank you to everyone who wore their RED. :-)

Wednesday, June 23, 2010

The Honest Truth

Joshland Note: When I created this post I was only going to write about my final thoughts regarding my recent health issues, but then I thought it might be an interesting experience for my readers if I narrated it as well. I AM STILL VERY POSITIVE! THAT WILL NEVER GO AWAY! BUT...there are times in life when I need to be a little frustrated. Even though I got my IV PICC line pulled today (YAHOO!), it doesn't change one thing about how I feel or one damn word of this post! Push play on the the video and read along with me if you'd like. THIS IS NOT A VIDEO FOR LITTLE ONES TO WATCH...PARENTAL DISCRETION IS ADVISED:

I've been on antibiotics of all shapes and sizes for my entire life and I have to say this: The last month and a half has been the hardest antibiotic stint I've ever been through. I'm physically, mentally, and emotionally drained. Scrapes, bruises, coughing, and bleeding have been far too common place, particularly these last three weeks. It hurts to move, it aches to sit, and my stomach reached it's antibiotic tolerance level weeks ago. Mal-absorption, missing intestines, and highly concentrated drugs DO NOT play well together. I'm just broken. Sitting up in bed night after night thinking about how much my health has changed in such a short amount of time is baffling. New and unwanted experiences are happening more often than I'd like and while I'm taking it all in stride, I'm not going to lie: I hate it.

I'm not saying that my health is heading downhill at a break neck pace, I'm just saying I'm not the young man that I used to be. I find myself caught in memories of a decade ago when three therapies a day was overkill and the only time I'd EVER wear a mask on a plane was if it was Halloween.

I've been crying...a lot. For myself, for Angie - man, I have no idea how she did it for all those years, and for all the CFers - especially the little kids - who only know this as their DAILY ROUTINE. I'm hurting in places you aren't even supposed to hurt and I've only been on IVs for 3 weeks, so I can't even imagine how they must feel every single day. Suffering is NOT and SHOULD NOT BE a part of anyone's life. Peaceful things to Conner, Skye, and all my other kindred spirits. If I could take it all away, I would .

I'm at my wits end and I'm trying really hard to be brave. For my family, my friends, for Angie, ...and for me. I don't want to be sick anymore. I dislike it with every fiber of my being. The good news is that the bleeding has healed, my fevers are gone, and my body will bounce back. I hope that the extra time I've spent "drugged up" will benefit me and make things better for a long time to come. And yet...I wonder...

But then I think about all the amazing things happening in the CF Community. CFers I know are getting their new lungs after months and months of disappointments and people are happy, healthy, and living their lives in spite of CF. It's the reality of the CF world and it's amazing and frightening all at the same time.

There...I've had my moment to be upset. Sometimes I need to vent my emotions, otherwise I'll explode. I think negativity in small doses is healthy. Whether you are "healthy CFer" but hit a big bump in the road and are frightened, or you are "in-patient" more than you are "out-patient" and are overwhelmed with your life...It's okay to feel that way. Your feelings are YOUR feelings. Never let anyone tell you it's wrong to feel the way you feel. When you're ready to move on, it's important for you to look at the positives in your life, otherwise this disease WILL consume you. We all have our own journey through life. This one is mine and I'm glad this particular part will be over very soon.

Now it's time to make the transition from black and white into color. Time to enjoy the summer, to be outside, to exercise, and to get back into the positive swing of things. Thanks for listening and letting me be honest.

Peaceful Things,


Friday, June 11, 2010

Joshland Projects

What's been going on in Joshland? Well...Lots of stuff. I'm doing my best to keep busy, which is really hard to do when your temporarily broken body is calling the shots. Despite all the resting and lack of energy, I've been moving forward on a few projects:

- Through family friends, I've connected with a local barbershop/doo wop quartet called Grand Avenue. They've happily agreed to help me with a "Moganko Musical Project" (No relation to the Allan Parsons Project) that I hope the entire CF Community will really enjoy. That's all I'm able to say at this point, but here is a little preview to whet your appetite:

- I also attempted to keep the promise I made last week about making my home IV stint amusing and educational. Here is a video I created about two very important aspects of home IV health care: PICC line blood draws and dressing changes. I don't think it's hard to watch, but I put a warning on the beginning for those with weak hearts and stomachs. If it makes you feel better, Moganko left the room while it was going on.

Here's to keeping busy while your under the weather!

Peaceful, Restful, and Productive Things,


Saturday, June 5, 2010

Hunka, Hunka, Burnin' Josh: Hospital Edition, Part II

"Lord almighty, I feel my temperature rising
! Help me, I'm flaming, I must be a hundred and nine! Burning, burning, burning, and nothing can cool me! I just might turn into smoke, but I feel fine!"

~ Elvis Presley - Burnin' Love

Anyone else end up in the hospital this weekend and a fever of 102? 'Cause I did. It's my second stay in less than a month, which hasn't happened to me in years! I was incarcerated straight from what was supposed to be my follow up appointment for my previous hospitalization. To make matters worse, I forgot to pack a bag again. Forgive me, I'm an optimistic pessimist. The fever had come and gone since Memorial Day evening. We're not sure where it came from, but here are three possibilities the docs and I came up with:

1. Traveling - I went to California two days after getting out of the hospital. I wore a mask on both flights and washed my hands like I had OCD, but I still could have caught something. Living life is always a risk when you have a chronic illness. I used to stop myself from living, but thanks to my wife I remembered that not doing things isn't much of a life. I'd take the same precautions and do it again because life is too short to worry.

2. Possibly 'California Feverin' - "Valley Fever" or coccidiomycosis is a fungus/viral illness native to the southern part of the U.S. It causes fevers in CFers that randomly rise and fall and might have fit neatly into Casa de Josh, causing a new breeding ground for grossness. By the way, why do all of these terms sound like terrible STDs? I swear Carly, I only have eyes for you!

3. C. Difficile Infection - is a bacteria that infects the body due to use of antibiotics. This is a pretty common side effect for me whenever I go on any type of antibiotics. My digestive system is sensitive as it is and when you attack it with potent drugs that kill good and bad bacteria....owees can and usually do happen. That's when probiotics come in. These little drugs help restore the good bacteria in the body and cut down the chances of C. Diff infections. Think of it like the "Eat Me, Drink Me" scene in Alice and Wonderland. Improper amounts of these "magical biotic pills" can throw everything out of wack. Once you figure out the right combo, then it's not too hard to manage.

The most entertaining part of this option is the treatment. One would think that the best way to treat an infection caused by antibiotics would be to STOP taking them! However, if I do that before the other "bugs" are eradicated, then they can grow back and become immune to that particular antibiotic. Soooooo...the treatment for C. Diff is........MORE antibiotics! Different ones, mind you, but more drugs none the less.

Long story longer, after two days of lots of inconclusive tests and potent IV antibiotics, I am back home, feeling better, and recouping...AGAIN. But this time I'm on at least at two weeks of home IV's if my stomach can take it. Ugh. Stay tuned...I'll try my best to make this stupid stuff entertaining. The important thing is that I'm on the mend. No worries. :-)

I don't know how any of my friends who are frequent hospital visitors - regardless of their illness - do it so often and I sure as hell don't have any clue how Angela survived her multiple month stays in back in the 80's and early 90's during the dark ages of CF. Actually, I have a guess... I think it's because no matter if it's for a weekend or for months, we survive because it's one of the things we do best. Much love and respect to my friends who take it all in stride.

Having great nurses helps a lot, too. They put up with my smart ass remarks and dished them right back. :-) Thanks Calli and Katie. You and the rest of the staff made things tolerable.

I'll leave you with a humorous thought from my short but stupid hospital stay:

With the exception of walks outside for fresh air and a change of scenery (because exercise is important), I turn into a hermit when I am admitted. I saw my sister get sick in the hospital enough to know that there is nothing good out in those hallways. Only sick people germs. That's why I had this sign posted on my door. What part of this sign is hard to understand? My nurses and nurse's aides were pretty good for the most part, but the rest had very short term memories. Even one of my doctor's admitted that they didn't even see the sign...on the eye level! What?!?!?! They got a little good natured teasing for that. :-) This may be a future social experiment that I'll need to test via video.

Peaceful and Recovering Things,


Tuesday, June 1, 2010

Thanking For "Thank Yous", Gifts, and Support

It's been a wild few weeks. I'm on the mend, but I'm still not 100 %. I'm on A LOT of oral antibiotics which means that my mouth tastes like chalk, sulfur, and bile. Meanwhile, my stomach is doing more loops than a swirly straw sucking up chocolate milk. I could go into further detail about my "exacerbation rehabilitation", but I'll save you the details because, quite honestly, I'm full of talking about it. It is what it is and I will be fine.

I feel the need to say how thankful I am for all of the love I have in my life. All of the kind emails, thoughtful gifts, and supportive gestures I've received over the past few months have been so heartwarming. Here are a few very special ones:

- My friend Kat from The Blooming Rose Foundation sent me a pencil recreation of a childhood picture of my sister and I. So sweet and thoughtful. It made me cry a little. Yeah, I with it! :-) Love ya, Katmandu!

- My friend Sarah finished a quilt made up of my old pro wrestling t-shirts just in time for my birthday. It took her over a year to complete it. She was even able to save the "Ultimate Warrior" shirt my sister gave me that was in ruins because I wore it so often. It's my favorite piece of the quilt and it never fails to bring a smile to my face. Thank you Sarah and all of your loyal assistants on the "West side". Lots of love to all of you. By the way, readers: Before you question my sanity, you should really read these two posts that explain my infatuation with pro wrestling:

My Life and Pro Wrestling: The Real and The Scripted - Part 1

My Life and Pro Wrestling: The Real and The Scripted - Part 2

- Joshland's J-Walkers covered the Saint Paul Great Strides Walk in a sea of orange. I got a few emails from people who knew exactly which team was Josh's Team. That's called good branding. Our team raised around $2,000 dollars, which I think is pretty respectable. Lots of love to all of you.

- Last week, I received an envelope filled to the brim with thank you cards from the students at Eden Prairie High School's "Peer Insights" class. It's a yearly engagement where I speak about my life with cystic fibrosis. I always walk away from it with a better understanding of who I am as a person and what I want to do with my life. In case you didn't know, I love public speaking! I love to make people happy and share my story with others. Not because it's remarkable, but because it's a simple story of a guy who has been able to live a normal life while participating in extraordinary things and facing what some would call a huge obstacle. When I speak to these young adults, I'm well aware that I'm not the only one with obstacles. I hope my story motivates them to achieve their dreams and create new ones like I have. Here is a post I wrote about last year's visit:

My Kindred Spirits

- Yesterday, my blog reached 2,000 hits for the month of May! That is crazy to me, but thank you! I'm thrilled that you enjoy "Welcome to Joshland" and keep coming back for more. Moganko feels this is all because of him, so we should to change the site name to "Welcome to Mogankoland". We are currently in negotiations. :-)

Giving thanks is so important to me, but I have to be honest and say I don't usually send out written "thank yous". I still have bitter memories of watching my mother and my two aunts write out hundreds of thank you cards to the people who attended/donated money at Angela's funeral. To this day, I feel that this is one of those instances where thank you cards are not necessary nor required. It's just one more thing that adds to the stress of a grieving family. Of course, my mother not only felt obligated to do so, but she WANTED to send them out. That's just my mom's way.

I prefer a phone call or a handshake/hug. It's more personal to me and I think it means more when you can have a conversation after the "thank you" instead of just a two second card. I do realize the impact a card can have on a person. All of those "Peer Insights" cards were so sweet and personalized. I'm also aware that I have many scrapbookin' friends who read my blog and send me fantastically intricate birthday and Christmas cards. Please don't stop this tradition because they not only are they cool, but my wife loves to get them too. She has made it known that we should always send thank you and possibly start sending Christmas cards (Stop her Stop her!) because they make people happy. She also knows - while she understands and respects my position - that I am bigger than the bitterness. "Bitter Josh" is not the person she married. She's right. I'm getting better about it, but it's really hard for me.

In closing, if you have ever received a "thank you" in any form from me, know that it's from my heart. Thank goodness I have a blog or I would lose the use of my left hand from cardwriter's cramp. I just quadrupled my productivity. :-)

Peaceful and Thankful Things,


What'd You Think?

One of my favorite things about my blog are the comments I receive on my posts. I am so thankful that you take the time to write them. I may not respond personally to everyone, but make no mistake...I read every single one.

If you'd like to leave a comment, but don't have an account that's listed in the drop down menu, choose the "Name/Url Anonymous" options. Then write your comment, fill in the word verification and click "Post Comment". I will receive an email and post your comment once I've approved it. :-)

Peaceful Things ~ Josh
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