Your gentle touch, your tender care. A smile as bright as sunshine; a heart of no compare.
A spirit that will glow forever, in the memories that we share.

Monday, May 23, 2011

Steve on NBC10 Sports Final 5/22/11

We had another chance to share our story last night:

http://www.nbcphiladelphia.com/news/local/Howard_Honors_the_Memory_of_7-Year-Old_Fan_Philadelphia-122429204.html

Here, Steve talks not only about the home run Ryan hit last Friday after the school dedication and his promise to play for Aidan that night, but also about the SECOND home run Howard hit this past Saturday night-- after a week-long, hit-less slump-- just as the announcers were talking about Aidan and sharing our story.  The first homer made us smile big and wide; the second gave us chills :)

Thank you, John Clark and NBC10!  And thanks for hitting another homer, Ryan!

Sunday, May 22, 2011

In the News: Delaware County Times 5/22/11

If you're local, pick up today's Delaware County Times; if you're not, check this out:
http://www.delcotimes.com/articles/2011/05/22/sports/doc4dd87f9ebdc50875341504.txt

Thank you for writing about our story, Ryan Lawrence!

Thursday, May 19, 2011

5K for Aidan J.-- Now Accepting Registrations and Donations!

 

Saturday, June 18th, 2011
First Annual 
5K Run
5K Family Walk
Kids Races
Facebook:  "5KforAidanJ"

We're UP!  We're LIVE!  We're taking names and getting registrations!  After only three days of being up and running, our event website has pulled in over $2,800!  Awesome!  Proceeds will benefit Parent Heart Watch, Simon's Fund, and Peter's Place (www.PetersPlaceOnline.com), where Devin has been thriving from the play-based group therapy model since October.

Please help spread the word-- not only are we hoping to raise money for the organizations that have supported us and want to end sudden cardiac death in children, but we also want to get local children (ages 5-18) signed up for the cardiac screening event that will take place this Fall.  Currenly, EKGs are not included in a well-child check-up and are difficult to get-- yet an EKG has an 80% chance of detecting either an electrophysical or a structural abnormality in the heart.  Approximately 1 out of every 100 children screened has been found to need follow-up for a heart condition.  PLEASE consider signing your kids up for this easy, quick, non-invasive test!

Help us spread the word!  "Like" us on Facebook at "5KforAidanJ" and check out our race website.  Aidan LOVED to run FAST, so the focus on this day will be on the kids, with the magician, playground, and age-divided dash races-- but we have all the professional equipment for the competitive adult runners and will be posting results online.  Please join us-- and if you can't, consider making a donation to help us and Parent Heart Watch (www.ParentHeartWatch.org) and Simon's Fund (www.SimonsFund.org) to stop Sudden Cardiac Arrest from taking the lives of the children we love.

Questions?  Contact us at aidansheart@gmail.com.  If you'd like to make a donation by mail, please make checks payable to "Parent Heart Watch" and write "5K for Aidan J." in the memo line; submit to:  5K for Aidan J., P.O. Box 72258, Thorndale, PA  19372

Thank you!!!

Tuesday, May 17, 2011

WOW! Thanks RH and Aidan J.!!!

So, during the video and with the handwritten note from Ryan Howard last Friday at the Brandywine Wallace elementary school ceremony, the Big Guy promised that his next game would be dedicated to Aidan.  Turns out, the next game was at 7pm that night.  Turns out even further, Ryan hit a three-run homerun during his first at bat.  Wow.  Did Aidan slap wings on that ball or what?!!

The announcers chimed in:



It's pretty unbelievable and surreal for us all, but we know, without a doubt, that this was a moment for Aidan and his favorite Phillie, Ryan Howard.  We're ecstatic that the two had a moment in which to connect; it's another confirmation that our Aidan lives on among us in spirit.  GO, PHILLIES!!!!!  And thank you, Ryan, for so much during these past few days.  We hope to meet you in person to thank you from the bottom of our hearts...

Christy

Why? again...

I see that there's a lot of new interest in our story, particularly in the posts that talk about what we know and don't know regarding why Aidan died.  This one, titled "Why?" was written in December and might give new readers some background on what happened and why we're so interested in working with Parent Heart Watch and Simon's Fund to prevent this tragedy from happening to other families...

------------------------

As our Christmas cards are finally making their way to you, and you're perhaps checking out our blog for the first time, there will probably be a hope for learning about why Aidan suddenly passed away on the afternoon of September 4th.  And I've had in my mind draft after draft of the letter I would write regarding what we know, or more aptly, don't know, at this point, but I've been a busy little elf, and it's late, and I'm tired, and it's crushing to recount the last three-plus months of autopsy and histology  reports, doctor visits and phone conversations, Internet research, frustration with the opinion' of the coroner's forensic pathologist, and the reversal of that opinion by our group of highly specialized CHOP medical professionals.

In summary, we still don't know what caused Aidan's heart to stop suddenly, on that afternoon, after a morning of riding his bike and running errands and playing in the yard with Devin.  He was fine.  It was a normal day.  And yet, at some point during the few minutes during which I was helping Devin change his clothes, Aidan collapsed without a sound in the hallway just outside the bedroom door, and when I went to him, he was already gone.

Our doctors, who are all highly-renown specialists bearing 15 syllables to each of their professional titles (I kid you not), have been baffled.  The plain truth, we're learning, is that medical science "just isn't there yet."  We just don't know enough about the electrical conduction system of the heart to understand exactly what trips it now and then.  We've also been told, redundantly, sometimes with more compassion and sometimes with hints of impatience, that there's a good chance we'll never know exactly what happened.  Genetic testing, which we're about to undergo, is far less defined and produces far greater nebulous results than we'd assumed would be the case, in the year 2010, in one of the most advanced countries in the world.  And somehow, we're supposed to accept that.

Common phrases that have been reiterated to us are:

Unfortunately, sometimes, this just happens.  We don't know why, but it does.  The hearts of kids thought to be perfectly healthy and with no pre-existing conditions suddenly stop.  Rare, but it happens.

Nothing could have been done to help your son.  You didn't miss anything.  The best doctors in the world could have been in the room with you and the results would still have been the same.

And this one, which always confounds me because our doctors, all parents, and whom have all been wonderfully supportive and compassionate, somehow find the ability to say with just a little more detachment than I find comforting:

You are living a parent's worst nightmare.  

Since September, we've learned about other families who have suddenly lost their school-aged children to some kind of "cardiac event," sometimes eventually with a cause determined, sometimes not:  a 9-year-old on Long Island; an 11-year-old in New Hampshire; another 7-year-old whose state of residence is unknown to me but whose father is a cardiac specialist and is so devastated by his loss, even two years later, that he couldn't bring himself to make contact with me at the request of his friend, my aunt.  It happens.  We don't know why, but it does.

I can tell you that, on our end, this 'unknowing' has forced our left brains into hyper-drive, causing us to experience almost a delayed sense of grief, as our shock and lack of a medical explanation (on top of the trauma experienced that day) leave us still in disbelief.  And very much concerned about the health of our other children, and ourselves, and our extended families.  The chances of Aidan's death having been caused by a genetic arrhythmia are "minute," we've been told:   this "won't happen again in your family, or probably to any other family you'll ever know."  Except that we've already experienced the nearly impossible.  We've already been jilted.  We've spent the last seven years trying to protect our kids from accidents, kidnappers, and strange illnesses; in fact, we spent our efforts ridding our house of BPA-filled plastics, chemical cleaners, and pesticide-laden food, like many of you.  We were even, no doubt, on the front page of PECO's weekly company newsletter with the caption, "CRAZY," as we insisted that an EMF reading be taken of our backyard fence, which lies under a power line, before we bid on our house.  Yikes.

And still this happened.  And still we don't know why.  If we think about it cosmically, as in 'what did we do to deserve this,' our minds implode.  So right now, at this point, with the rest of the world taking the next two weeks to not answer work phone calls and to let messages sit on desks, we're taking a break.  We've got holidays, Devin's 5th birthday, and the quickly-approaching due date of our newest little guy to focus on.  And we'll need your phone calls, your emails, your texts, your visits, your little notes in our mailbox, to get through.  Please don't be concerned if we don't answer right away; you can rest assured that your effort, however, is making a difference to us. 

Thank you for checking in-- and now it's really late-- that's what the week before Christmas is all about, right?!  xoxo to all-- and to all a good night--

Christy

Monday, May 16, 2011

Brandywine Wallace Dedication Ceremony: May 13, 2011



What a tribute.  What a community.  What a lucky family we are to have our son honored in such a genuinely loving, celebratory way.

Last Friday, May 13th, the Brandywine Wallace Elementary School Principal Linda Leib, faculty and students, together with the Home and School Association, several talented community members, a number of compassionate families, and the efforts of several businesses within and beyond the community, dedicated a beautiful grove of five tall maple trees, a large kid-climb-able boulder, and a precious plaque with a poem we'd selected and an imprinted copy of the hand print that Aidan made during his first week of school in September while the class read and discussed Audrey Penn's The Kissing Hand.  That's a long sentence, but it doesn't even begin to embody the magnitude of the generosity we've been granted in Aidan's memory.  We are so, so, so incredibly grateful.




And Aidan was with us while we celebrated his spirit.  It was weeks after choosing the boulder with Margaret O. and her husband, John, that we discovered an undeniable capital letter "A" imprinted in the rock's face-- perhaps the result of a dynamite blast by the housing developers who raked these large rocks out of the land, but certainly not an intentional detail.  Months earlier, when Steve led me to the boulder field to point out which rocks he, Margaret, and John had tagged, I felt right away that this was our rock.  It had red tones (red was Aidan's favorite color), plenty of mass for kids to climb upon, and that perfect letter "A" marking the side that would later be the front of the memorial.  It was Aidan's way of saying, "Here I am!  This one is me!"

And to our surprise, the boulder and trees were planted in the front of the school, prominently, atop a small hill coming up from Dilworth Road.  When we took our family walk to go visit the grove last Tuesday night for the first time, we stood to read the plaque and realized, fittingly (thanks to Aidan), that the exact angle in which the boulder and plaque were placed allowed the viewer to overlook the park across the street.  That park, which we fondly call the "Pajama Park," is an idyllic and peaceful span of spotless soccer fields, a playground, and a children's garden dedicated to community members who have gone before us.  Our nickname for the park came about when we'd first considered buying our current house:  I couldn't sleep the night after the open house because I felt we were on the verge of a major decision, and when the boys awoke early the next morning, I hoisted them into the car in their PJs to check out the neighborhood.  When they spotted the tennis courts and new playground equipment at East Brandywine Park, I happily let them romp around that morning at 8am in their footies while I made a very short mental list of reasons not to move to this community.  Very short.

So as the First Grade students sang, "Somewhere Over the Rainbow" (one of our family favorites)  while a special 4th grader's gorgeous voice rang out over them and a very best friend of Aidan's shared her handwritten story of their friendship, and while we unfolded the exquisite quilt that Aidan's classmates had each contributed a square of memories to, we cried, and we smiled, and we remembered.  To see the sadness in the faces of the young children who our son had befriended during his short little life was heartwrenching; yet, given the circumstances about death being final and life having to go on regardless, these children were led by their teachers and parents through a remembrance that will not be forgotten, to then a celebration that will live in their minds for a long time to come...


Enter Philadelphia's favorite green furball, the Phillie Phanatic.  With our favorite phive-year-old, the Devinator...


There was cheering!  There was clapping!  There was a bit of confusion as he tried to step with his size 19 feet down the tiny stage steps, but a few graceful tumbles later, the Phanatic was able to lead the crowd in "Take Me Out to the Ballgame,"-- the irony was not lost on Steve or I that that was the last song we sang to the boys each night before bed.  And still more surprises...

The lights dimmed.  The video screen lit up.  And Ryan Howard's face appeared.  Aidan's favorite Phillie,  aka "The Big Guy."  Aidan would beg us to forgo the bedtime story ritual so that he could watch the first two or three innings of the Phillies just to see this gentle giant step up to bat.  A soft voice started, telling us:

video

Wait...it gets better!  For Steve, an autographed RH jersey with a handwritten note reiterating the dedication of that night's game to Aidan:


More on that Friday night's game in the next post...

As all good parties eventually must end, the Phanatic disappeared behind the stage curtains while the first few classes were led out of the gym.  I was so happy to see some of Aidan's best buds (mostly girls :) and thrilled that they let me give them big hugs.  And then someone nearby said, "That Devin!"  I looked up toward the stage to find my unabashed middle son taking the floor, holding his hands Nixon-like and air-high-fiving the fourth and fifth graders that were waiting for their turn to leave the gym.  In no time, they were on their feet, cheering, rushing the stage and... really??!!  chanting "Devin!  Devin!  Devin!"


Hoo, boy, will he be disappointed when Kindergarten isn't quite all that!!!

When the paparazzi left, we snapped a family photo of us with the big green fluffy guy:


And we knew, much as we felt the void of our Aidan's physical presence, that he was smiling on us, and on all at BW, because he was the reason for our phantastic celebration.  And for Devin's new rock star status.

Thank you, a million times over, to the amazingly kindhearted, thoughtful, dedicated people who made this day happen.  The grove will serve as a permanent reminder to all that a happy little guy once existed on this earth and made us all a little lighter; and now, his lifting spirit accompanies us everywhere, and forever, as embodied in the five beautiful soon-to-be shady climbing trees, and in the permanence of the red 'A'-riveted rock that lies in the center.  To say that we're 'grateful' just doesn't do it.  In order to fully express the gratitude we feel, if I could, I would reach under my breastbone to tear off a portion of my heart and hand a pinch of it off to each and every person who was a part of this process.

Because, in a nutshell, BW community, you gave us a part of our son back.  Aidan is there, overlooking the Pajama Park, ushering his brothers and his buddies up into the school driveway, the sanctuary that is the heart of the East Brandywine community, forever.

THANK YOU, all of you.  THANK YOU, THANK YOU, and THANK YOU again and again and again and again.

xoxo
Christy

Sunday, May 1, 2011

5K for Aidan J.-- Save the Date!

Please save Saturday, June 18th from 9am-11:30am for the inaugural 5K for Aidan J. Run/Family Walk/Kids Races event to be held in Downingtown, PA.  Details to come!  "Follow" this blog or click the Facebook link below and "like" the page to get instant updates.  Proceeds to benefit Parent Heart Watch (www.ParentHeartWatch.org), Simon's Fund (www.SimonsFund.org), and Peter's Place (www.PetersPlaceOnline), all 501(c)(3) organizations that are doing amazing things to stop Sudden Cardiac Death in children and teens and help grieving children and their families through loss. 

We need sponsors!  Let us know if your company might be interested!

Facebook Link:
http://www.facebook.com/pages/5K-for-Aidan-J/181469641905738