Sunday, June 24, 2012

June 24, 2012: 500th Post...


Thanks to blogger's new dashboard, the number of posts you have uploaded sits right in your face once you log in.  This is the ONLY reason I know that this is my 500th post here.  Does that mean anything?  Yes.  Blogger sends you a gold ribbon when you reach 500 posts... just kidding.  If nothing else, I can say it certainly feels like that many posts.  I started this journey in 2009 right after Bella was born just to get news updates about her 'out there.'  My how times have changed in technology even since then.  Facebook wasn't as ubiquitous, my cell phone got NO reception in Angelique's hospital room (by comparison, I can make and receive calls, surf the internet, etc. inside the elevator inside the hospital I work in), and email was about the extent of my social media.  I had heard of blogs, but I thought they were diaries for people with an overblown self image (LMAO, now that I have one, that sounds about right).  I mean why would anyone care enough to read my thoughts and feelings?  The befuddlement in that question for me lied in the fact that I didn't care enough about anyone else's feelings to read their blogs.  I was self absorbed, and in many ways still am.  I care way too much about other people's opinion of me,  I'm vain, elitist, self righteous, with a  pretty big ego to boot.

That's okay.

On a good day, I've got a few good qualities as well, and I try to water those and nurture those qualities more than the aforementioned.  Inside me lies an infinite world of possibility to entirely muck up the world, or make it a little better, and this blog has been a playing field for me to hopefully do a little bit of the latter.

There are parts of us (the Ringgold clan) in you, and parts of you in us.  That's what brings us all together.  We are all just little individuations of the whole of God, like cells in his body.  So, we resonate with each other, and in doing so, we prove that we have the capacity to resonate with any other... at any time we choose to... it's all just a matter of choice.

We continue to choose you, and you continue to choose us.  Thank you for this communion.  It has been extraordinary.

(This concludes my 'deep thoughts surrounding my 500th post' segment.  Now onto the local news...)

Tomorrow, we begin our trek to Minnesota!  First, it is across the O.C. to grandma and grandpa's house.  Being that our flight is out of LAX (Los Angeles International Airport) on Tuesday morning at 9am, we decided to use the grandparents' house as our staging camp and have grandpa play his usual role as airport shuttle for us.  Thank you grandpa!  You make trips a lot easier logistically and financially for us!  Once we arrive in Minneapolis late Tuesday afternoon, we pick up our rental car, and head north to the lakes to the cabin of our dear friends, Bob and Lynne.  We'll hang up in Nisswa on the lake for Wed, Thu, and the first half of Friday.  Then, it's down to St. Cloud to BBQ dinner on the farm at our friend and EB ambassador Christie Zink's home.  We are so excited to be invited (I probably invited myself... let's be honest... I do that a lot when we're traveling) to her place, meet her family, and share a midwest home cooked meal together.  Then, it gets funny.  Since St. Cloud is a bit of a hike from downtown St. Paul where the race is on Saturday morning, Christie got a hotel room downtown in St. Paul.  So we thought, "Hey, that's a pretty neat idea!"  We were planning on staying at a friend's house in Albertville, which is also quite a jaunt from St. Paul, so we rented a room in the same hotel!  So, after dinner, we'll all pack up our caravan, and head to St. Paul.

Then, Saturday morning, it's TIME TO FLY!  We need to be there by 7:45 to set up.  My 5k run is at 8:30, the family 5k walk is at 9:30, the kids 1k fun run is at 10:30, and the awards I think are at 11:00 or so.  After attending out first Time To Fly last summer, Ang and I got a good look at how the event is run, and what sort of presence we wanted PUCK to have this summer.  Being the competitive BOY that I am, I saw this amazing team of family and friends last year RUN AWAY with the largest team and largest fundraising awards.  They're called "Jack Attack" and they walk for their 3 yr-old son who has an inoperable brain tumor.  Despite the umpteen procedures and hospital visits, Jack is bright, happy, and full of life.  (Sounds like Bella, right?)  I was so inspired by their organization and camaraderie that I took their stats from last year and picked those for our goals this year.  I think they had 93 team members and raised like $24,000 for pediatric cancer research... WHILE Jack is still undergoing unending procedures and chemo to try to beat this tumor.  THAT is inspiring.

While we might not beat those goals this year, I am IMMENSELY proud of and grateful for allllll the people that have stepped up to be a part of Team PUCK this year!  Right now, we are at 72 strong and have raised over $16,700.00 and we are gunning for a couple of thousand more before next Saturday.  We'd also LOVE to have more people join our team!  It is a really fun event, and my hope is that after everyone experiences it the first time, they will come back and invite their friends and family for next year!  This is only PUCK's 3rd year in this event.  The first year I think they had a dozen or so participants, last year we had about two dozen, and then we just decided to GO BIG.

Confession:  Did I mention that I am competitive?  I am.  I have to confess that what really happened was that I watched the awards ceremony at the end of the event where they recognized the fastest runners, biggest teams, biggest individual fundraisers, and biggest team fundraisers.  I saw a giant hall full of people clapping and cheering for one another, and I wanted in.  I wanted to be part of that club. I wanted to win. With EB, it just seems like we lost.  We lost the day Bella was born with it, we lost the day she was intubated, we lost the day she died, and we lost so many times in between... well, you have some idea if you've been along for the ride.  I just wanted to experience winning something related to EB, even if it was as juvenile as building the biggest team or running the fastest time.  Even in the raising the most money category, we have watched our awesome EB brothers and sisters from DebRA, EBMRF, and JGSF raise some tremendous sums of money over the past 3 years to further VITAL research into viable treatments for EB.  I just wanted to see us, PUCK, the little guy, come in first for a change.


Totally 4th grade.

That's okay, too.

Because there's another side to all of that as well.  It's the part where on Saturday, after the run, I get to walk side by side with the Moorelands, and Marc and Mandy Seymour, whose daughter Quinn lost her battle with EB during transplant, just like Bella and Sarah did.  I get to walk beside other EB families like the Provosts who are coming all the way from Illinois.  I get to see Denise Heydn, who is coming from Wisconsin; a devoted blog reader who drove with her family and own special needs child to Bella's Minnesota memorial, and back home again in the same day.  I get to walk with Christie Zink, who has single handedly IGNITED the EB community with her I REFUSE EB campaign, and donated all the proceeds to PUCK.  It's the part where on Saturday, over 70 teammates will have PUCK business cards in their hands with Bella's Text to donate campaign on one side, our website QR code on the other, and our logo and name to boot, handing these out to 250 other peeps there who after Saturday, will realize that Children's Cancer Research Fund is even cooler than they realized.  After Saturday, hundreds of people from the local community will realize that there is this bizarre, awful disease called EB, and that the docs at U of M, and PUCK, CCRF, and the Minnesota Medical Foundation (MMF is who we coordinate the text to donate campaign with) are leading the charge locally to rewrite history, so that 10 years from now, there are various treatment options for this once incurable disease, and no child ever has to die from it again.  After Saturday, the docs might have from one event the amount of money we raised IN ONE YEAR just a couple of years ago.  After Saturday, I'm gonna celebrate with a cold beer!  LOL, had to throw that in there.

So, there you have it.  I'll be 39 and 10 months old on Saturday racing in the men's 30-39 bracket.  Last year, I ran 22:21 and placed 8th in my division.  Today, I ran 22:23 in 80 degrees on a much hillier route than Saturday's race route.  I'm gonna run my little behind off, and I'm going to try to beat 22:00 (I really think I can do that) and see if I can pull off winning as the oldest guy in my division (My confidence isn't as strong on that one, but I'm gonna give my best and see what happens).  My consolation is that next summer, I'll be the youngest guy in the 40-49 field! Weeeeeeeee!

Last but not least.

This whole trip and event is overshadowed by the really intense time Charlie Knuth is having.  Please keep him, his supermom Trisha, and his whole family in your prayers this week.  They were planning on being a part of Time To Fly, and right now, they need every prayer and thought to keep Charlie going.  You can read Trisha's latest update from today HERE.  Go send her some love, will ya?

IF you can make a donation to our team CLICK HERE

IF you'd like to join our team, show up Saturday morning at 8am at Harriet Island Park in St. Paul!

God night.

Sunday, June 17, 2012

June 17, 2012: Happy Father's Day!

Ali's new jar system for her allowances... hand painted by the master herself of course... they say "Saving" "Donating" and "Spending"...


Happy Father's Day.. er um... to any? fathers that actually read this blog!  LOL.  Are there any of you? If so, COME FORTH!  Renounce your lurker status and stand tall!  I salute you!

Thanks to my amazing wife for giving me a hall pass to play 9 holes of golf with 8 other dads and sons from church this afternoon, for getting the donuts this morning (usually my task), for an ADORABLE card and gift card to Dick's Sporting Goods, for a wonderful meal of pasta with homemade meatballs, and for allowing me the luxury of not touching a dish in the kitchen sink (usually my duty, too) all day!

I asked if she'd do the blog post for me as well, but I came up short there.  You're stuck with me, but not for long.  I rented Captain America on Friday night and still haven't gotten to it.  So, I'm gonna get to it now.

BUT before that, I'm gonna ask that you put in some double and triple time prayers for Charlie Knuth.  You may know that Charlie is one of the true EB BMT success stories.  Well, this week, he got sick... really sick.  He's at Amplatz hospital at U of M in Minnesota receiving treatment for what looks like a simultaneous viral and bacterial infection which has really kicked his little butt.  Please pray for his recovery, and send his amazing supermom, Trisha, energy, health, comfort, and strength.  She is Charlie's world, and a walking inspiration to me.

Trisha's latest caringbridge post can be read by CLICKING HERE

Lastly, here's a cute clip of Julian cracking up at Ali's splashing antics in the bath tonight...

God night.

Sunday, June 10, 2012

June 10, 2012: A Bump in the Road...

Summer Hair cut!


Have you ever heard of Hand, Foot, and Mouth Disease?

Well, until our friend's little girl recently got it, I hadn't.

Until Julian's daycare provider called me on Friday...

..."Mr. Ringgold?  Julian has a fever of 102.5.  He didn't finish his bottle, and is really lethargic.  Two kids this week came back from having Hand, Foot, and Mouth Disease, so I'm concerned that he might have caught it."

Well, she was right!

Poor little guy.

He's had a fever on and off since Friday.  Tonight, he peaked at 101.5, so that's not too bad.  He's got bumps all over his legs, diaper area, a big one that like's like a teen-age zit on his cheek, and we think some in his mouth, because he can't tolerate anything remotely hard.

He's crabby some of the time, but mostly still just his happy little cherub self.  What a little trooper!  It's been a little bit of a logistical challenge to rearrange schedules to manage having him at home with someone all the time (he's unofficially officially quarantined), but the European Football (soccer) Cup is on right now, so I'm happy to chill out with him and watch me some real football when not taking Ali on excursions and church outings to keep her from going stir crazy in our little place.

Say a prayer for the buddy, will you?

Rockin' out on daddy's "rock guitar"...

In other news, our big event in Minnesota called TIME TO FLY is coming up fast!  Team PUCK has 62 members walking so far!  How much does that rule?  We are the largest sized team under the featured members on the website ... the event is thrown by our parent organization, Children's Cancer Research Organization... with the most money raised so far!  I hope I didn't just jinx us!

We've raised over $11,000.00 so far for the event, and when you combine it with the exciting challenge grant, that's $22,000 more for the docs to keep making this treatment safer!  Will you do me a favor?  Since every dollar is being doubled, your donation goes further than ever before!  WIll you donate a couple of dollars to my pledge fund?  I'm 69% to my goal.  CLICK HERE to help out!  Even a couple of bucks will help.  Thank you as always for supporting this mission we are on!

Once again, I am falling asleep at my computer, so I'm going to wrap up by saying THANK YOU to all of you for still being with us.  This is my 498th post on this site.  Whew.  I wonder how many pages that would take up, given how long-winded I am!  LOL  Seriously though, this blog has made an indelible mark on my life, and it couldn't do that without you on that side of your computer, offering your attention, listening, and love.  Thank you.

God night.

Monday, June 4, 2012

June 3, 2012: Of Service...

Scenes from Bella's Birthday dinner with her butterfly garden in the background.  Check out the NEW VIDEO below from that dinner... it is hilarious!


(I was so tired last night from the Grief Retreat, I needed to just crash... sorry about the late post!)

How good do you feel when you experience yourself truly serving others?

This has become an ever-increasing goal of mine recently.  I think the brain and soul are wired to serve. I know that recently, I have experienced both physical, emotional, and spiritual increases in energy, joy, and bliss immediately after being of service.  This past week provided ample opportunity to chronicle this.

Last Monday was Memorial Day, and in my past, this really didn't mean much to me.  While my dad served in Korea, my grandpa served in WWII, two of my uncles were in the Marines, and my cousin is currently a Naval Commander, I haven't lost any family or friends while serving.  My dad never made a big deal about his service, and so Memorial Day just never seemed... personal... until this year.

As I alluded to in last week's post, our interim pastor made a point to make Memorial Day personal for all of us, and he was successful.  By linking Christ's love for us and his willingness to lay down his life for us, I realized just how amazing a sacrifice it is by our men and women in uniform to do just the same.  I realized just how many people have died protecting this country, and I realized that I owe EVERY SINGLE ONE OF THEM my gratitude.

On Monday, I got a tiny opportunity to give back.  As I wrote to Bella last week, I played the Star Spangled Banner at a really large Memorial Day celebration out here.  I got the call on Thursday that their guitarist had dropped out, and as an event planner, my heart went out to the organizers, and while I had never played the National Anthem on guitar before, I knew it so well in my ear that I knew I could figure it out in no time.  I was happy to be of service to the organizers, because at the last two conferences I planned for music therapists, two music therapists, Lillieth Grand and Emily Ross, each stepped up two lead large sessions that had been scheduled where the original presenter had to back out at the last minute.  They both 'saved the day' for me, so I was all to happy to pay it forward!

I believe in the teachings of Dr. King Jr., Ghandi, and Jesus Christ regarding non-violence, so to be able to honor those who have fought and died for me in a way that is authentic to who I am as a healer and musician by playing such a moving piece IN THIS CONTEXT felt so great.  I felt like I could finally give back, but in my own way.  Anyhow, there were over 1,000 people gathered at this event, and it was truly moving to be a part of.

On Tuesday, one of my patients was in a bad way... lot of anxiety over an upcoming procedure.  I played hymns and we sang, and when I saw him again on Thursday, he was less anxious, but had a lot of pain.  We sang hymns again until we reached a point of spiritual joy.  He looked at me with a big grin and said, "There is no more pain."  My heart felt like it was going to burst, it was so full of joy and gratitude to God for being a part of this man's moment.  The healer is God, the instrument is music, and I am humbly and gratefully just the instrumentalist.

Then, on Friday, I flew back to my old home in Phoenix to work on the Grief and Loss Retreat at the Franciscan Renewal Center in Paradise Valley.  I worked on this retreat before with my mom and another therapist, but I took some time off after Bella died to do my own grieving before coming back on board.  Well, we all agreed that it felt like the time was right for me to rejoin the team, given the amount of grief work I have been doing.  It was the right call.  I felt great.  There were two sets of parents and one mom who had lost a child, and I was able to be with them, listen to them, hold the space of grief for them, counsel them, and walk with them in a way that the other two counselors couldn't.  It was such an honor.  The Renewal Center was one of the locations for the Gatherings we had around the country after Bella died, and it was the site of my dad's funeral as well, so it is truly Holy Ground.  Enjoy some pics of the grounds.

I also visited some venues for a reunion benefit concert my old band is having in the fall to benefit PUCK.  We picked the venue and the date, and completely hit it off with the new owners of the club.  We're holding it at a club we used to play at all the time, but it has since changed hands and been renovated.  It looks amazing, and will be the PERFECT venue for our night.

Now, for all of you readers who don't know about my old band, it will most assuredly shock, scare, and even freak out or offend you.  At that time of my life, I was in a very different place than I am now.  I was still very spiritual, and loved and was inspired by Jesus, but was extremely angry and disgusted with some of the actions within the Catholic church I grew up in, and with the actions of some of the televangelists in the Christian community.  I was very "anti-organized religion" during my twenties, and it wasn't until I was about 30 that I really saw the possibility of rejoining a faith community.  During that time "in the wilderness," I did a lot of things that weren't too bright, but what I will stand proudly and say is that my singer and I were adamant about telling our fans that they could have a direct relationship with Jesus and God if they weren't ready to join a church.  We looked and sounded scary, and purposefully pushed the envelope to attract the kids that normally run from the idea of going to church, or Christian music, or praise and worship, and you know what?  We got 'em.  We brought a lot of kids into the idea that it could be cool to be spiritual and believe in God and be inspired by Jesus.

Our name?


I warn you, though, the exterior is not easy on the eyes or ears, but the spirit within had a plan, and at least while I was in the band (I left the band in 2002 and they remained together for about 6 more years), we delivered on it.  More on all of that in my upcoming book... ;-)

God night.