Monday, May 30, 2011

May 30, 2011: Happy Memorial Day!


First off, THANKS for coming by!  We are continually moved by the number of people who still read our blog and send us cards, wishes, thoughts, and prayers.  Thank you.  Your attention is where you direct your time, which is your most precious commodity.  Thank you for sharing your time and attention with us as we continue forward in our journey for a cure for EB to ultimately honor Bella's life and death.  Can I tell you YET AGAIN how amazing Ronald McDonald House is?  Friday was Bella's official birthdate, and ON FRIDAY, we received a card from them letting us know they haven't forgotten us or Bella.  I mean, they even timed the snail mail perfectly.  That is being generous in your care of your residents WAY ABOVE and beyond what is expected.

When I took the Landmark Forum way back in 1998, the Forum Leader spent some time on the distinction between "being generous" and "being stingy."  In anything we do, we have the opportunity to be generous or stingy.  In our attention to detail.  In our attention to a loved one.  In our compliments.  In our compromises.  When you are doing something, are you just dipping your toe in, or are you THROWING your whole self in?  I think this is a great concept to invest time and attention into, because frankly, just thinking about it is powerful.  If you've never even considered it, how do you know that you are as generous as you think you are?  After all, we all tend to think highly of ourselves in certain areas, but have we truly examined ourselves inside of a paradigm like "generous vs. stingy?"  How about your eye contact with your spouse or children?  Do you initiate it?  Do you hold it?  Are you the first to relinquish it?  See, I LOVE these kind of questions.  They automatically map out opportunities to become a better version of my self, without making the current version wrong!  I think that is the difference between self development and self help.  I think self help operates from the baseline that there is something wrong that needs fixing, whereas self development sees growth on a curve without an end, and that all points on the curve are OK.  Huh, I never articulated that difference so clearly to myself before.  Thank you for listening! LOL.

Okay, okay, enough thinking out loud.  Time for the twice weekly report.  First off, I am toying with blogging three times a week as twice a week fills a single entry with QUITE a lot of material lately.  I wonder if I should have a PUCK blog and a Ringgold family blog... they really are one in the same, who am I kidding!  LOL.  Okay, so, thrice a week.  Sun, Tue, Thur?  Whattayathink?  Just a thought.

The weekend was full of activities!

* Friday night was hip-hop night for Ali and cousin Wil, followed by a nice supper with Ali's Aunt Dina, Uncle Steve, and little cousin Molly.  Steve and Dina gave us this AMAZING bottle of wine as a gift.  The wine is called BELLA and it is from 2009, Bella's birth year!  How awesome a gift is that?

* Saturday, I had the sad fortune of watching Barcelona lift the Champion's League Trophy.  As much as I dislike them (they have knocked out Arsenal two years in a row now), they are by far the best team in Europe, and easily the world.  They made Manchester United, the champion's of the Premier League in England, look like a mid-table scrappy team by comparison.  It was shocking the different level Barca plays at.  Oh well.  It's gonna be a rough summer with nothing but MLS to watch.

* Yesterday, Ali and mommy went to the aquarium while daddy stained cabinet doors.  Then, we feasted at our next door neighbor Joe's place.  Joe was nice enough to invite me over when he thought I was alone for the day.  Joe is a great neighbor; the kind everyone hopes to have.  He's always polite, upbeat, willing to share a story, a tool, a meal, anything you need.  Good people.  I played soccer again yesterday as well!  Not the young guy I once was, but it fuels me to keep training to see how much I can bring back!

* Today, I worked on the doors some more, while mommy and Ali baked.  Then, we went to grandma and grandpa's for a yummy BBQ with the cousins and grandma's long time friend and neighbor.  Dina asked me to bring my guitar, so we had some musical fun as well.  My nephew Wilson is like a Johnny Cash Prodigy.  It's crazy - he's 3 and he can rattle off like 5 Johnny Cash songs in their entirety!  He is absolutely obsessed with playing my guitar, which is just about the cutest thing ever!  I know I wasn't like that at his age!  I see some guitar lessons in his future!

AH! The reason for the whole blurb at the top of the post!!!  Hahaha, HAPPY MEMORIAL DAY!  I may have lost my dad to cancer, and my daughter to EB, but I cannot imagine losing a loved one to war.  I was so lucky in that I was there when my dad and Bella took their last breaths.  To be half a world away as my loved one took their last breath... I cannot imagine.  There is something so much more intimate and immediate about death now that I have seen it and touched it.  When a heart stops, the finality is so overpowering, there is no other experience like it.  There is no pause, no undo, no rewind.  My deepest and humblest sympathies and condolences go out to any and all of you who have lost a loved one serving our country.  It must be so bittersweet; it is the highest honor to serve and sacrifice so ultimately, and yet I imagine the pain is not one ounce lessened.  I imagine the honor and the pain coexist together.  Days like today have so much more personal meaning to me now.  To the spirits and angels who came before me and served and died on some field, in some forest, beneath some sea, in some jungle so far from your home, my ability to write this very post hinges upon you.  Therefore, I dedicate this post to you, the generator, the protector, the extender of my freedom.  I hear parents say it all the time to me, "I don't think I could be as strong as you..."  I say, "Bullshit.  You'd do ANYTHING for your kid."  I imagine me saying the same to you, "I don't think I could be as brave as you," to which you might reply, "Bullshit.  You'd do ANYTHING for your country, wouldn't you?"

I sit frozen.  Humbled.  Silent.  I bow my head in respect.  I gulp.

I would.

I would carry a stretcher to any man or woman in the field.  I would labor as long as my body would support me in any hospital or on any field to make sure that while any fellow soldier might not get to take their last breath with their loved one like my father and daughter did, they wouldn't have to take it alone, either.  And yet, it is easy for me to write such noble lines, sitting in the comfort of my office.  It is those, like The Immortal Chaplains that I learned of while aboard the Queen Mary, who really have the only right to speak on such matters, and they are silent.  In ultimate respect and gratitude, so then I should be.

God night.

Thursday, May 26, 2011

May 26, 2011: Ride the Wave...


Well, things are continuing "all ahead FULL" around here in PUCK - West Headquarters. No sooner than we pack up most of our supplies from Bella's Bash on Saturday, we had another fundraiser tonight! LOL. We had the first of four local restaurant fundraiser nights over the next four weeks. Tonight, was Wahoo's, a long-time favorite of Angelique's and mine.  Sorry I didn't post the flyer up here; I get a big fat F on that one.  I'll post the next 3 flyers at the beginning of the week on my Monday night post so if you live locally, you can come out and support PUCK by eating at a fun, family-friendly restaurant!  Thank you to those of you that made it out to Wahoo's tonight.  We realized just how easy restaurant fundraisers are; just show up, give 'em your flyer, stuff yer face, and 15-20% of your tab goes to PUCK.  How easy is that?  Having gone for lunch AND dinner today, I am FULL of salsa, though!  (I'll be reaching for the TUMS by 1am, I predict).

PUCK has undergone some serious organizing this week as well!  We actually created our first Org chart, and really fleshed out all the different categories of accountability and now everyone involved (currently Lonni and Jay Mooreland - PUCK's founders -, and Ang and me) gets to write out what their roles and responsibilities will be.  By this time next month, we'll have a 3 year strategic plan written out! This feels really empowering, and just taking this first step of organizing has already shifted how we think about our goal.  We feel so much more confident that we can accomplish our vision that "ten years from now, there are multiple treatment options for kids with EB, and no child ever has to die from this disease again."

There are so many worthy causes to be a part of, and quite frankly I'd like to be a part of several, but I feel like EB chose us, and now that we are forever a part of the EB family, this is the place to start.  We each have so many different gifts and passions, it's what makes our world so full, rich, diverse, and complex.  EB might not seem like the broadest "problem" to take on, but we know in our hearts how science and research works:  when you crack the code of one disease or treatment, it most often leads to much broader applications.  This is the way with most pharmaceutical drugs, therapies, and treatment protocol.  We feel like if Dr. Tolar can truly be given a chance in his lab to take this current treatment to the next THREE levels he sees possible, it will not only be the end of bone marrow transplant as we know it (invasive, risky, life threatening), but the potential beginning of a whole new realm of treatment possibilities.

I played soccer on Sunday for the first time in a year.  I scraped the skin off my right elbow for the four millionth time.  Then it hit me.  I am an EB carrier.  I have half the anchoring velcro in my skin as anyone else on that field.  I have been dealing with blisters on my toes, skin peeling of my knees, and off my right elbow my entire adult life.  I mean, all.the.time. when I play.   I put this Benedryl product on my arm ( a topical ALCOHOL based product to minimize itching and pain) on Monday and couldn't believe how much it stung.  I mean STUNG.  If it had been Ali, she would have started screaming.  If it had been Bella, she probably would have started yelling at me.  Then, I remembered the time I accidentally poured rubbing alcohol over her entire open wound that was her knee rather than saline.... don't put your alcohol and saline bottles near each other by the way.  Man, did she scream like I had never heard.  I can't imagine life inside an EB body.  The baseline of pain signals pouring into the brain all the time, day after day.  I remember the life of being an EB parent.  The baseline of stress and anxiety signals pouring into the brain all the time, dad after day.  I think a life worth living is one where on my tiny block of the universe, a particular experience gets transformed for all subsequent kids and parents.  There are plenty of other diseases in the world; I'm not all pollyanna.  However, crossing THIS particular one of the incurable list would be pretty cool.  Bella will smile and say, "Good job, daddy." and I'll get to say, "None of your journey was in vein, honey."  As a parent, that would be job well done to me.

Moving right along...

Please take a minute to click over to our TEAM BELLA! page.  There, you can read about some world class HEROES who took our challenge to raise some funds in their own communities, and see who WON our Team Bella Challenge!  Someone just got an iPad mailed to them, and someone else got a flip video!  These are tiny tokens from Ang and me to say THANK YOU THANK YOU THANK YOU for not just reading, but taking action and getting out into the community and sharing about EB.  We are grateful for our Team Bella, and would love ANYONE who feels moved to action to join!  Just email Ang at and say, "I'm IN!" and she'll begin to work with you on just how you can make a difference as well.

Last but NOT least...

If you aren't already familiar with the EXTRAORDINARY story of the Cannell family, please jump over to Courtney Roth's blog.  Courtney has done a GREAT job of laying out there story in a clear and concise way.  Read her post, and take whatever action you feel moved to take.  I know we EB parents often ask a lot of our readers, and sometimes it feels like I'm beating the drum endlessly about donating money.  We are passionate about sharing these stories of inspiration with the world.  There is plenty of hate, misery and fear peddled daily in the mainstream media, BUT the blogosphere allows us to write a different story line.  One of hope, community, love, and action.  To me, that is a healthier diet of information to digest.  Thank you in advance for your partnership in supporting the Cannells.  Thank you for still being here with us on our journey as well.

God bless you, and God night.

Ali at her Kindergarten Open House last night...

Ali and Bella at California Adventure together for the last time...

Monday, May 23, 2011

May 23, 2011: What a day...


For those of you who are married, remember your wedding day?  Remember all the planning, and then POOF, the day came and went like the snap of two fingers?

Well, that's what Saturday was like for us!

Months of planning, 3.5 hours of set up, 3 hours of FUN, an hour and a half of clean up, and that's a wrap on Bella's Birthday Bash!  I would be remiss if I didn't thank:

Our Volunteers:

Carolyn Rhinehart, Andrew Truong, Maria McGovern, Aditi Verma, Janet Steward, Charlotte Harris,
Kelli Kelly, Sejun Lee, Sara Dudik, Celine Wang, Ami Kunimura, Partik Mehta, Russell Barr, Sarah Zonouzi, Paloma Hernandez, Natalie Tran, Rosalina Hernandez, Cassidy Bergevin, Jessica Rose Western, Max Messervy, Soren Vitarelli, Stephanie Ignatius, Nahoon Wang, Daphne Wagner, Andy Kim, Claudia Quinn, Joonhee Lee, Becky Human, Tony Phan, and Stephen Prendergast

Our Sponsor:  Molnlycke Health Care

Our Contributors:

Hollister Wound Care, Zoomars Petting Zoo, Creative Cakes, City of Anaheim, The Rusted Chain, Sara Cooper, Janet Steward, Denise Heydn, Johnny Rockets, Lonni Mooreland, Luna B Tees, Miguel Ortiz, Verve Jewelry, Carpet Solutions, Chick-fil-A, Filling Station, Taste of Sicily, Santa Ana Zoo, The Butterfly Fund, Chelsea Truong, Kala Brand Music Instruments, Asics, Doris Kollias, Rodger Rhinehart, Ralph's Grocery, Ana Elkins, Saddleback Equipment Rentals, Koki's Teppan and Sushi, Lazy Dog Cafe, Wayne and Kathe Searcey, The Bite Market, Mother's Market, Rochford Law Group, Wings of Hope, Tustin Ranch Golf Course, OC Fire Authority, and OC Volunteer Clowns

Angelique and I also wish to especially thank Joyce Jones and the St. Paul Episcopal Pre-School, the ongoing support of Children's Cancer Research Group and the Minnesota Medical Foundation, and the vision and faith of Lonni and Jay Mooreland.

The day began cloudy, but almost as if on cue, at 11am sharp, the sun broke through and provided us with a simply picture perfect day. A gentle and constant breeze kept the heat away, and allowed us to enjoy the sunlight without frying in it. There was just so much happiness and joy in the air. Music was playing, children and adults were laughing, the happiness was rampant. We came out just a few bucks shy of our projected goal, which in itself was great considering this was our first event in Orange County.

I have to give a ultra uber hats off to my amazing wife Angelique for planning and coordinating a phenomenally organized event. The compliments we received on how well the event itself ran were worth it all, because person after person indicated how enjoyable the day was, and how much they'd like to be part of anything we do in the future. Ang was AMAZING. Did you SEE how many volunteers are on the above list? She was ready for them all, with stations and directions, t-shirts and PUCK name tags as well! There were SOOOO many moving parts to this event, and Ang kept on top of them ALL throughout the planning and execution. She is an amazing woman.

Overall, we feel like we threw a really great birthday party in honor of Bella. It was a day she would have enjoyed, because she enjoyed people so much, and the people that chose to come to this event on this day filled with every graduation known to man were some of the sweetest, kindest, and generous people we know. From the bottom of our hearts, we thank you all for sharing in our day. For those who don't live in SoCal, thank you for your words of encouragement, and thank you for sharing our message of hope with your communities.

Highlights of the day for me were watching the Captain of the Fire Engine hopping along in the cake walk, playing backing guitar for my nephew Wilson as he stole the show singing Johnny Cash on the mic, meeting two of our blog followers who posted faithfully throughout Bella's transplant journey, pushing my colleague Lisa Jackert's darling son on the big wheel tractor through the dinosaur maze, and the butterfly release.

The day was full of snapshot moments, and I could write pages upon pages of the moments. There were some bittersweet ones for me as well. Bella's last birthday seems so much more than a year ago. It seems a lifetime ago. I don't know if I meant the pun there, but the word choice just seems appropriate on multiple levels. So much has happened since this time last year. I know I feel a whole bunch more than just one year older! LOL.

On that note, I need to drag my body to bed. I played soccer yesterday for 90 minutes, and it was my first time on the field since in Minneapolis last June! I can't really move my neck so much, that kind of krept up in the last hour or so. On Thursday, I'm gonna tell you all about Amazing Team Bella, the contest, and the winners! Until then, may gratitude flow through your heart, even for the things you don't yet understand...

God night.

Thursday, May 19, 2011

May 19, 2011: T minus 1.5 days!


Man, is the momentum swingin'!  I told Angelique today, this past week has been so much fun, because throughout our grief journey there have been many weeks where it just felt like we weren't accomplishing anything with the PUCK Foundation. This week, however, it's all coming together.  That is a good feeling.

Today, the video newsletter Jim Palmer shot on Saturday with the text  2 donate campaign was sent to 10,000 people.

Today, OC Family magazine did a follow up piece promoting Bella's Birthday Bash!

Today, The text to donate campaign was included in an update news story on WFRV in Green Bay, WI, including a short piece about Bella, AND her Pilates 100 video was included in the news story!

That's a lot of publicity in one day!

We are so grateful to Jim Palmer - the newsletter guru, Jo Ashline for OC Family, Trisha Knuth - Charlie's amazing mom, and Chelly Boutott - the reporter at WFRV CBS affiliate in Green Bay!  Thank you all for sharing our story with your communities.  We are honored.

Tonight, we had a final planning party at our place.  Our friend Sara Cooper and her mom came over to help make all the gift baskets and silent auction items.  I think we have roughly 35 items!  Thank you to all that donated goods and services to the event.

I also got a call from "The Butterfly Whisperer" tonight!  This is a beautiful woman named Kimberly Parry from Ontario, Canada that heard about me through a gentleman I met at James Malinchak's event over the past weekend.  Anyway, turns out she is a monarch butterfly farmer, and she reached out to offer butterflies AND grant wishes upon butterfly releases.  She is such a beautiful soul; her generosity just poured over the phone, and we had never met!  Folks, there are GOOOOD people walking this planet.

So, here it is, the final call to action for the event on Saturday!  If you live in SoCal, or know someone who does, c'mon out, or send 'em out our way!  If you are not local, in lieu of coming and supporting us, won't you consider sharing our text 2 donate campaign with your friends and family?  If you just comment, FB, or email us letting us know you shared that with your communities, that would really be appreciated.  Remember, you can donate $5 simply by texting BELLA to 50555.  Easy, right?  I really like this campaign, because five bucks is a pretty humble amount to ask for, and it allows people to participate in funding a cure to a childhood disease without having to drop in excess of $200 and up for a typical fundraiser.

In other news, Ali's kindergarten orientation was last night!  Boy, was that surreal.  Ali starts kindergarten in the fall... where DID the time go?  The principal and two kindergarten teachers were just about the nicest people on the face of the earth, they were so sweet.  The school is within walking distance, and has before and after school care on site, so I can continue to work.  Having said that, I still signed up for the PTA and volunteered to assist in the classroom!  How can I resist?  If I was willing to spend 14 hours a day by Bella's side, I think I can hang with Ali in her school a few hours a week, right?

Ali also resumed swim lessons today.  This is her doing her Barbie in a Mermaid Tale impersonation!

Okay, gotta run; I jerked open my eyes to see that I was sleeping at my desk!  LOL.

Talk you all on Monday!  Can't wait to share how everything goes.

P.S. If you are still reading, would you drop a comment of support for the event?  We'd really appreciate hearing from you!

God night.

Tuesday, May 17, 2011

May 16: The Bash is only 6 days away!

Ali's and my creation from her new play dough breakfast machine birthday gift... the rest of the pictures are from our back patio where we were playing...


It's the week of Bella's Birthday Bash!  YAY!  We are so excited for Saturday.  Our team has been meeting at least once a week for over a month now and the event is really coming together quite nicely.  Mostly, we are just so grateful for all of the amazing gifts that have been donated - from food and concessions, to our Sponsor, Molynlycke Healthcare.  The silent auction and opportunity drawing items have been flowing in as well, and there are some really great gifts on the docket!

Some of the silent auction items include:

4 tix in the City of Anaheim Suite at Angels Stadium
A $400 gift certificate from THE top carpet cleaner in Orange County
2 4-packs of MVP level Angels tickets
A $140 Asics gift certificate
and more!

One of our friends is working on getting an autographed mini helmet from Joe Theismann this week.  I had the honor of meeting him yesterday, shaking his hand, and thanking him in person.  He is a class act.  Mr. Theismann was one of the speakers at my friend James Malinchak's event that just ran from Thu-Sun in LA.  In his speech, Mr. Theismann mentioned that one of the biggest privileges of his life right now is that his signature can raise money for childhood cancer research.  Little did he realize I was sitting in the audience, soon to be a beneficiary of that very autograph.  So, I thought it was the right thing to do to track him down and connect a person to his story.  He was incredibly gracious.  It was a trip meeting him, because he refers to himself as a little guy, and I remember him on TV growing up as this little guy... well he's an inch taller than me in real life!  I'm 5'11", and he's an even 6 foot.  When I shook his hand, I realized that NFL football players are REALLY BIG.  LOL.

There were a lot of great speakers, and I could write a really long post on the 4 days, but I have to take this opportunity to thank my friend James Malinchak for allowing me to come on to his stage and share our story and our text 2 donate campaign with his audience.  He gave me 10 minutes up there, and I wrote out my piece that I wanted to share and rehearsed it for a week straight with a stop watch so that I would say what I wanted and not go over.  The caliber of people that I got to share the stage with at this event, from James himself, to Joe Theismann to Sir Anthony Hopkins to Jack Canfield to Bruce Glazer to Jonathan Sprinkles to Dr. Bill Dorfman, it was a tremendous privilege to be given that chance as a total 'unknown' in the speaking industry.

This is the beautiful wind chime that was so generously given to us by the Ronald McDonald House in Minneapolis on the eve of the 6 month anniversary of Bella's death...

It gets better; Davy, James' COO, is going to give me both the video and photos taken.  I'll let you know when I have them, it will probably be a couple of weeks.

The really good juice continues, though.  See, my talk was about how you can't see what God can see when you create a goal or vision for your self or your life.  You can only see just what's right in front of you, but you have to get moving and get in action - even if you don't exactly know how that vision is going to materialize.  Well, I was sharing my story to provide inspiration, but also to persuade the audience to text BELLA to 50555 to donate $5 to Drs. Wagner and Tolar at the U of M.   What I didn't know was that the moment I walked off stage, a man I saw in Subway at lunch would walk up to me and explain that he sends a weekly video newsletter to a list of 10,000 names, and that he'd like to interview me RIGHT NOW for his upcoming newsletter so that his list could have the chance to donate.


Not 2 minutes later, Davy is holding the video camera while this gentleman is interviewing me.

Three other people came up to me and asked if they could interview me on their radio shows to share the text to donate campaign and our story with their audiences.  One of these kind people was a man whose nickname is the "Hockey-ologist" and host of "The Hockey Source" live radio show that runs weekly on XM 204 and Sirius 208 satellite radio.

He didn't know our organization's name was PUCK when he asked me to be interviewed.  When I showed him my business card with the PUCK logo on it, the both of us nearly fell over when we realized how God had brought us together like that.

Folks, we can NEVER see what God can see.

We simply cannot anticipate moments like that.

We just have to TRUST HIM, get in gear, and if we want to see just how beautiful the view is from the top, we just have to 'get on the lift.'  That was my tag line in my speech for getting into action.  Get on the lift.

When looking at a goal or vision or dream of yours, are you merely looking up the mountain from the base, trying to figure out how you're going to accomplish it, or are you on the lift?  Get on the lift, TRUST ME.  You can't figure out your next step standing still.

God night.

Friday, May 13, 2011

May 13: Friday the 13th? Really?


How many years has it been since those movies scared the you-know-what outta me?  It'll never be "just" Friday the 13th without 'being' Friday the 13th, will it? LOL.

Well, today was Ali's "Promotion" ceremony out of pre-school!  It was short and sweet, and followed by a super-fun carnival of fun and food!  The kids sang a modified version of "He's Got The Whole World in His Hands," complete with choreography!  Ali rocked her parts and I'd post the video, except I shot it "sideways" with my camera, and I can't figure out how to rotate video!  I only know how to rotate photos! So, I turned my laptop on its side and we all watched the video once so it wasn't a complete loss.

Ali's teachers are just so great.  They put together a binder at the end of the year with all sorts of stuff Ali has worked on, including assignments, homework, photos they took of her in action, and tons of art, along with her certificate of completion of course. In addition, at least 4 of them told me today they are coming to Bella's Bash next weekend as well.  They shared their favorite "Ali moments" with me today, and had my jaw dropping at some of the stories.  She is just such a little adult, but still sweet!

Ali's teachers also let us set up a table for PUCK to promote for next week's Birthday Bash!  We gave away a few bracelets, received a couple of small donations, talked up the event, and shared the amazing scrapbook that our friend Denise made for Ali, because all of the pictures are of her and Bella.  Thank you again, Denise, for such an extraordinary gift.  I got to tell the story of how Denise, a devoted blog follower from Wisconsin, made a scrapbook for Bella, and a separate one for Ali, drove to MN for Bella's memorial with her husband and special needs child, gave us the books, attended the memorial and reception, then promptly got the family BACK in the van and drove BACK to Wisconsin, all in one day.  This was someone we hadn't even met before the memorial, but this blog bonded us.

THAT is awesome.

On the home front, we had our penultimate planning meeting this evening for the bash, and things just keep falling into place really well!  It seems like we get a new donation of some sort every single day.  Our opportunity drawing and silent auction get better every day!

Oh - if you are an Angels fan, you are DEFINITELY going to want to get ready for an UNBELIEVABLE, chance of a lifetime opportunity that has been gifted us for our silent auction!

Okay, there is much more to tell, but I am falling asleep typing.  In the midst of all this, I am attending James Malinchak's 4 day seminar, so I am wiped.  Great stuff, great people, and Sunday should be extra special.  Keep you posted!

God night.

Monday, May 9, 2011

May 9, 2011: Getting Closer...

Steve's Heavenly Brunch... (I brought the fruit salad... the tough part! LOL)


I hope everyone had a great Mother's Day!  We did for sure.  We started with breakfast for Ang and Ali, then headed over to Ang's brother Steve's house where he had Mother's Day brunch planned for his wife, Dina, Ang, Grandma, and Dina's mom.  Normally, Dina cooks some pretty amazing stuff, but Steve went above and beyond!  I told him that he really got himself in trouble, because now the gig is up; everyone knows he can cook!  He's gonna be expected to cook more than once a year now.  Should have just stuck with the grill and catered.  Oh well.  All joking aside, it was an exquisite meal!

After brunch is was POOL TIME!  I have been taking Ali to the pool at least 4x a week lately and we've been working hard catching up for two lost summers.  Well, it really showed!  She was an absolute FISH in Steve and Dina's pool, and no one could believe how well she was swimming.  In the past week or so, her stroke has really locked in, and she can swim across the pool holding her breath.  This is a huge breakthrough for her, and you can tell she is really proud.  It's cute.

Ali, daddy, and cousin Wil...

Ang relaxed poolside with her mom while the rest of us got some play time in the pool.  With Ali's little cousin Wilson being an absolute water baby as well, the three of us had more fun romping in the water together.  It was just about the cutest thing in the world.  I honestly have to say that watching Wil's and Ali's faces under water (we all had googles on) chase me was the highlight of, well, a long time.  There was just so. much. JOY.  It felt really good.

It's those moments that are the cups of water in the grief marathon.  Those moments where everything is okay, and the moment is so awesome that there is no past and no future... there is just that moment.  Bliss.  Those moments help me deal with the treadmill moments, or the moments when I read, like today, of another EB child that earned her wings yesterday.  11 years old.  Sometimes, the fire to raise all this research money dwindles in our exhaustion and grief.  Right until hearing about that little girl.  It reinforces our passion for our new vision, that 10 years from now, there are various treatment options, and no child has to die from this disease ever again.  I figure the 10 years are going to come and go either way, we might as well have something to show for it!

In other news, Team Bella has raised over 6,000 to date!  We are so proud of and grateful for our members!  Angelique made a great point in her weekly Team Bella email when she wrote:

Sure, we were shooting for more but let me give you an idea of what that $6000 can do.

That money can...
  • Pay a few months salary to a technician in Dr. Tolar’s lab.
  • Pay for Mesenchemyl Stem Cells for a patient whose insurance does not cover this therapy.
  • Pay for data collection necessary to get new therapies approved by the FDA and other agencies.

I'm going to jump around a little more here...  In other Ali news, today she had her kindergarten assessment!  Get this, I walked over to her preschool, picked her up, and we walked to her elementary school together, did the assessment (which she ROCKED) and then walked back to her preschool, then I walked back home... all in southern California!  I know!  Seems like a total big fat lie that you could walk that much here!  LOL.  Seriously, in the little neighborhood we live in, we are really lucky to have two shopping centers, an elementary school, three parks, and a community college (where the preschool is) all within walking distance.  Ali is so ready for kindergarten!  When mommy asked Ali how the assessment went, she replied something to the effect of, "They wanted to see how smart I am."  Awesome.  I tell Ali she is smart all the time and have for years.  First, I think she is, but second, I want her to know I think she is, and third, I want HER to think she is.

Lastly, this week is a big week for us down here in PUCK - SoCal.  We have TWO planning meetings for Bella's Bash.  We are so excited to share that Molynlycke Healthcare is going to sponsor the event!  We just love everyone there; they have been SOOOOOOOO good to us since the day they found out about Bella in the NICU.  Jim Wetrich, the President of their U.S. Wound Care Division will return an email to me on a Sunday morning.  I can't tell you what that means to us - we literally feel loved by a company if that is even possible.  It seems that right now we have good news just about every single day regarding the event from volunteers confirming to silent auction and opportunity drawing items being donated, to the myriad details getting ironed out.  We are less than two weeks away!

In other PUCK news, Ali's "Promotion" is Friday, and the school is having a big carnival afterward.  Ali's teacher gave us a booth at the carnival to set up our PUCK stuff to promote Bella's Birthday Bash!  for free!  So we get to meet all the other parents in the school, share our story, and give them a flyer for next weekend!  I have also been asked to speak at the annual teacher appreciation dinner as the parent from the 4-5 year old class next Friday before the Bash.

Last but not least, my friend and one of ABC's Secret Millionaires, James Malinchak, is hosting a 4 day conference in Los Angeles this week and has given me the green light to share our story on his stage and allow me to share the Text to donate campaign with his audience to raise money and awareness for PUCK!  There will be over 500 people there, including a few celebrities like Dr. Bill Dorfman from ABC's Extreme Makeover and Sir Anthony Hopkins!  Today, I spent most of the day in the office writing exactly how I want that 10 minutes to go.  With the text to donate campaign, someone can text up to 6 times for a total of $30 a person.  There will be 500 people there, and I WILL be instructing them - with cell phones in hand - how to be a part of a cure to a childhood disease!  I'll be there Thu/Fri am, Sat, and Sun sharing our journey both on stage and off.  I'm hoping that either James or one of the celebrities will match whatever the crowd donates!  I have seen it happen already once, albeit with smaller attendees, but how could you NOT want to get involved with this if you've never heard of EB before?

Woof.  This was a long post.  There's been a lot to share.  The daily momentum of Bella's Bash has put Ang and I into regular emails, calls, and conversations daily, and the communication and teamwork has just been great.  Our teamwork with Bella was amazing, and it feels like we are getting that rhythm back once again to honor our little girl.  Man, Bella continues to bring out the best in us.  I guess, "Bella's Blessings" just keep continuing to be so appropriate to describe it all.  Thank you so much for still sharing in its joy with us.  We love you.

God night.

P.S.  My nephew Wilson LOVES Johnny Cash.  How much?  Look below.  He sang Folsom Prison Blues followed by Ring of Fire.  He's 3...

And last but not least, Bella playing my drum with her foot... then her hand...

Thursday, May 5, 2011

May 5, 2011: Happy Cinco de Mayo!


This holiday has admittedly lost its flair since children.  We recently met a lovely family in our development and we were joking today about what B.C. really means... Before Children!  LOL.

Tonight, I spent some time on some of the other EB kids' blogs that have been through transplant to get an update.  I miss them, and I miss their families so very much.  The saddest piece of it all was that while we were in MN, we met so many of the families as they came back for follow up, but at that point, Bella was in the PICU, so she didn't get to meet them or vice versa.  This may sound weird, but I miss being an EB parent.  I know, I know, I'll always be an EB parent, but life is continuing back to that happy 'normal' routine, and don't get me wrong, I am beyond grateful Julian is EB free, as is Ali... I don't know.  EB is just so... hard.  I mean, go and read up on any of the post transplant kids, and you see that this is just such a complicated disease.  It wreaks havoc with so many systems within the body, inside and out.  In the words of Dr. Tolar, when I asked him what did he learn from Bella, "EB is so much more complicated than we ever knew."  There have been a few times in my life, not many, where I had to be as "on" and mentally engaged as during Bella's life, particularly in MN.  There was also such a immediately tangible sense of purpose... here was this amazing child, who was even more dependent than a typical child, which is already totally dependent.  It was all just so 'worth it.'

Bella was so worth it.

God, I miss her.

I know that when I see her again in heaven, it will feel like a blink of an eye, but from this side of the coin, it just seems so long from now! Don't worry, I have decades of fun and work left in me right here, but heaven is going to be one sweet reunion.  Sorry for the semi-coherent rant... blogs are cathartic.

Speaking of EB blogs, you should go and vote for Patrice Williams for mom of the year.  Seriously!  She was nominated on a blog in her community and as her husband Matt says, I'm sure the other women nominated are all amazing women as well, but since Patrice is the only one I know, I should vote for her.  Seriously though, the person who nominated her barely scratched the surface of why she is mom of the year.  She is so much more to so many.  I am so grateful to know her; she is a constant inspiration to me as a parent and person of faith.  CLICK HERE for the blog page the nominations are on... you have to go to the bottom of the page and click on "vote for your favorite mom here!"

And speaking of catharsis, today, I ran my first 5K on the treadmill in preparation for Children's Cancer Research Fund's "Time To Fly" event in MN in June.  Usually, I run about 2 miles in a minute-by-minute interval for 20 minutes, but today, I decided to just run the extra 1.2 miles in 10 extra minutes to see what it felt like.  It was also my 4th consecutive day running (and I am FEELIN' it).  The weight I put on in MN still hasn't come off with the weight lifting and cardio combo, so I'm shaking things up a bit and hitting the cardio HARD for the next two weeks.  It's also to get me ready to play soccer again!  I'm kind of hooked on it as I have written about before, because I use the time to really dig in deep and meditate on what's on my mind.  Running gets a lot of energy moving through my body, both physically and emotionally.  I cry and release A LOT of my grief on the treadmill, which is a little awkward at a small gym, but it needs to come out.  So much so that I frequently call a close spiritual mentor on my walk home from the gym to process what comes up.  We talk probably 3-4 times a week, and it is so great to be able to verbalize and release to someone all the pain, and not have them wince or feel the need to do ANYTHING with any of it.  What a gift.  Kind of like this blog!

Since I won't be posting again till after Mother's Day, let me close by just saying a few words of gratitude to all mothers out there reading this. From my mom, to my mother-in-law, to my wife, to my sisters, to my sisters-in-law, to all of you moms I'm not related to... you are amazing.  I think I have mom envy.  Actually, I know I do.  Watching Ang growing a baby in her belly while mothering Ali, oh MAN, that is as beautiful and attractive as it gets.  The grace, beauty, strength, confidence, fortitude, persistence, intelligence, gentleness, and LOVE that I watch Angelique exude from every pore in her being... THAT is inspiring to me.  To my mom specifically, who - no matter what she is dealing with - greets you with a smile on her face and love and interest in her heart... thank you, mom for being such a vision of unending love and vitality.  I am very lucky to be surrounded by great moms.

And to those moms who don't feel like they are great moms, that's probably a good sign you are one. ;-)

God night.

Sunday, May 1, 2011

May 1, 2011: Good friends and our story shared...


Well it's been a wonderful weekend; Friday night, we had a good planning meeting for Bella's Birthday Bash!  Happy Birthday to Lara, one of Team Bella!  Then, yesterday our good friends, the McGuires, came down from northern California to spend the weekend.  John was one of my groomsmen, as I was one of his, and we've been friends since 1995.  He now has a beautiful family of his own as well, with the newest member being his 4 month old boy, Conner.

Yesterday, we embarked on the tall task of showing them as much of Disneyland in one day as possible.  No easy feat.  We got a little bit of a late start, but still intended to break our day up into two trips into the park.  Forecast was sunny and 80+, so by late afternoon, it really pays to be inside resting up for the night time.  We hit the park strong with Jungle Cruise, Tarzan, the Carousel, Casey Jones, Sleeping Beauty's Castle, The Royal Coronation, AND Small World before taking our first break.  By then, it was 3:30 and the park was beginning to sizzle, and we were beginning to fade and get cranky!  LOL

Off to our respective caves for a nap with plans to reconvene at Naples Pizzeria in Downtown Disney for dinner, followed by the fireworks and anything else we could fit in.  Well, we fit in getting silhouettes made of the kids, a custom mickey ears hat for John's daughter, the Tea Cups, the Fireworks, Pixie Hollow (sans TinkerBell), Winnie the Pooh (2x), and Pirates of the Caribbean.  All in all, a fair shake at one day in the park.  We didn't get out of the park till 12:30 and into bed till 1:45!  That was THE latest we had ever been at the park or out with Ali, but we napped from 4:30 to 6:15, so chances were we weren't going to be too tired, and while we were beat, we had more energy than we realized.

Today, we hit old town Orange for brunch at The Filling Station.  LOVE that place!  Then it was off to Irvine Park to ride the railroad and ponies, followed by a dip in the pool at the complex and a lovely dinner by Ang for the gang.  Just a fun-filled weekend with dear friends.  Can a weekend get any better?


The first story about Bella and our journey hit the (virtual) newsstands today in the Orange County  CLICK HERE to read the article.  The OC Register is our local paper, and we were lucky enough to be interviewed on Tuesday about our journey, and the article ran today!  We are so grateful to Jo Ashline at the OC Register for sharing our story so well, and for synthesizing so much material into a good, actually factual article!  Thank you, Jo!  If you haven't checked out her column called This Modified Life, now is the time.

Lastly, I just want to say how healing it was to have a healthy, 4 month old boy in our home today. I busted out Bella and Ali's old swing, he got changed on the changing station, he laid down in their crib... it was surreal watching how - please don't misunderstand me, I talked to both John and Meredith about this - easy it was to hold, play with, and care for Conner.  I am a visual/kinesthetic learner, so to see him and touch him in our home made Julian's arrival this summer so much more real and peaceful.  I noticed on so many occasions me shuddering when Baby Conner would rake, kick, or jab his feet into some hard or sharp object.  By the time the second day as over, I realized his skin wasn't going to shear off, and that we could hang out, and play without worry about harming him.  It was like I was able to dial down my alert setting to once again take for granted that amazing organ, the skin.  I started to really get happy and excited to meet Julian.

I am falling asleep writing this, so I'm going to end here and say thank you all for still being here through this long amazing journey.  I've said it before and will say it again; your presence has totally transformed our lives.  We hope we've had the chance to provide a tiny amount of inspiration in return.

Much gratitude and God night.