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.

Friday, December 9, 2011

Moxie

I'm not going to write about it, but I came across this quote tonight in one of my e-newsletters that I read to keep current on education issues:

Act boldly and unseen forces will come to your aid." -- Dorothea Brande, American writer and editor

That just about sums it all up.  And many of you readers are a part of those "forces."  Putting myself out here isn't easy, and you guys have rolled out the red carpet for me.  So thank you, for doing what you think isn't anything at all.  But I check the blog stats and I see your comments and it gives me courage and moxie to keep moving forward.  xoxo

Aidan's Dugout at Brandywine Wallace Elementary School

From our district-wide e-newsletter:  "There is now a special reading area in the BW Library called Aidan's Dugout. Aidan Silva was a first grade student who passed away suddenly last year. Through the generous donation of Mrs. Diana Snyder, this reading area will be enjoyed by all BW students and will be a pleasant reminder of Aidan and his love of reading (and baseball!). Special books will be highlighted and displayed each month. Aidan's brothers, Devin and Quentin, were the first to explore this new library addition. We also appreciate the assistance provided by DHSW in hosting a community children's heart screening last weekend in memory of Aidan."  THANK YOU, DIANA and the BW staff and community!!!!  We are so, so grateful for this special honor of Aidan!

Monday, December 5, 2011

Angel in the Outfield

I'm not one to believe that Aidan is a little angel, smiling down on me from the heavens with a harp in his hands and wings at his back, but if ever there were a moment in these last fifteen months where I felt my little man's spirit jumping up and down and high-fiving me the way he did the few times I ran 5Ks, it was this past Saturday.  On Saturday, Steve and I teamed up with the Simon's Fund organization from Montgomery County to screen kids' hearts.  We enlisted the medical expertise of a volunteer staff of A.I. DuPont cardiologists and technicians and nurses from Nemours, as well as numerous school and hospital nurses from the community, National Honors Society students from Downingtown West HS, generous DHSW administrative and custodial staff, and a partridge and a pear tree as we welcomed nearly 300 children and teenagers to have their hearts checked, free of charge, in time for a little peace of mind for the holidays. 

State Senator Andy Dinniman, who in June at our 5K presented us with a Resolution for Sudden Cardiac Arrest awareness, stopped by.  With his dog, of course, who did some pretty cool tricks for us.  U.S. Congressman Jim Gerlach, also a participant in the 5K for Aidan J. events this year, came to check out the screening event and offer us solid backing on our efforts to create a national database of children who have died from SCA.  DHS West Principal Tom Mulvey gave us pats on the back and nods of encouragement as he surveyed the remarkable jobs his NHS students were doing to ensure the smooth runnings of the event.  And somewhere along the line, Quentin popped in to give us a tight, drooly squeeze and remind us that Hey, Mom and Dad, Aidan's loving this.

I don't have any pictures yet.  I kind of purposely didn't pack the camera, wanting the day to play out as it would naturally be, without any staging or put-on-a-happy-face-ing for the camera, just letting it roll as it would.  I'm glad for the photos that were taken, however, and I'll pass them along as soon as I can wrestle the photographers for them.

But I'll tell you, it was a good day.  Oh, I know there were moments, when a few families were referred for followup echocardiograms (ours being one-- can you believe it?  It was Devin, and something popped up, but it's minor and we're okay).  Fewer families still were counseled by the cardiologists and encouraged to pursue follow up testing for possible abnormalities that may or may not have been life-threatening; the data isn't yet in, and when it does come through, I'm not sure that it will be that specific.  At any rate, 90% of people left the building breathing a little easier, feeling more secure that their children's hearts were free of structural or arrhythmic abnormalities (EKGs pick up about 80% of these at any given time).  And 9% had a bit of a scare when they were led to the darkened room in which the echocardiogram equipment was encamped, to emerge a half hour later with a sigh of relief regarding a false positive or a bit of an education concerning a perfectly un-scary abnormality (like us).  And 1%, 2 or 3, left the day a bit rocked, as something turned up, and more testing was encouraged.  But, armed with some information, a personal connection to some of the best doctors in the country, and the reassurance that "at least we found out, and we can do something about it," the families for whom the 'worst case scenario' came true are sure to realize:  They'll be okay.  Because of the knowledge, and because they can take action, their child will not die of Sudden Cardiac Arrest. 

It's late at night for people with terrible head colds at present moment, so I won't launch into the emotional diatribe I was prepared to offer about how Saturday's event allowed me to feel more like Aidan's mother than I have at any moment in the last fifteen months, as his old friends, classmates, and teammates poured in.  I won't even tell you in detail about how I felt so 'maternal' toward the many, many kids that walked in that I'd never even seen before in my life.  I'll just leave you with the sentiment that, while I don't believe in much in the way of angels, my Aidan was cheering me on that day.  "Alright, Mom!"  I can imagine him saying, "Another one!  You saved another one!  Awesome!"  I laugh as I think about this, the throw-back-my-head-and-let-it-all-out kind of laughter.  Yes, Aidan, we did, but only because we love you so much are we compelled to help other children.  We love you, my sweetie, so very, very much.  We'll do whatever more we can to make sure you know that."

'Night!
xt

Wednesday, November 23, 2011

In Today's News

Darren and Phyllis Sudman, who started Simon's Fund when their little boy passed away six years ago, wrote a great article for today's Philadelphia Inquirer.  Aidan is mentioned toward the end.  Please pass this along...

Article:  Heart Screening Could Prevent More Deaths

Simon's Fund is making possible our December 3rd heart screening event, along with the subsequent screening that we're in the process of setting up for the 200 people on the waiting list. 

Wednesday, November 16, 2011

Heart Screening Event is FILLED!

The heart screening event scheduled for Saturday, December 3rd in Downingtown, PA is FILLED!  If you'd like to be placed on the waiting list or receive information about the next screening (Spring 2012), go to http://www.simonsfund.org/get-screened/register/ and sign your child(ren) up.  We'll notify you as we get more information. 


Thanks to all who have registered so far-- it takes courage to do this, and I'm proud of you!  See you on the 3rd!

Friday, November 4, 2011

Register for the December 3rd Heart Screening Event!

Registration is now open online at http://www.simonsfund.org/get-screened/register for all youth between the ages of 5 and 19 for the heart screening event that will be held on Saturday, December 3rd from 8:30-4pm at Downingtown High School West, 445 Manor Avenue, Downingtown, PA.  The event is FREE, although donations to Simon's Fund will be gladly accepted.

Simon's Fund, who is sponsoring the event, has found that approximately 1 out of every 100 children is found to have a potentially life-threatening heart condition.  So far, 30 children out of 3,000 checked during the heart screening events hosted by the organization have been able to detect previously unknown structural or arrhythmic problems and are living with the knowledge and treatments that will save their lives.  

As Aidan's mom, I can't emphasize enough the importance of taking advantage of this rare opportunity.  If we had had such an opportunity before our son died, we may have been able to detect his heart condition and take measures to keep him healthy.   Aidan, like nearly all other children who die from Sudden Cardiac Arrest each year, seemed to be in perfect health until the moment he collapsed.  There was no warning for us.  We had no chance.  You have a chance to protect your children with this screening.

No one looks forward to these events, admittedly.  Will your child be the 1 in 100?  It's a scary, scary thing to think about, and it's tempting to not show up, especially on a Saturday when the weather might be beautiful and the kids have birthday parties and fun things to do.  And, for the older ones, there's the explanation that you'll have to provide; the "Why are we doing this, mom?"  I get that.  It won't be easy.  But it's much easier than paying the ultimate consequence.  And the peace of mind will be SO GREAT.

So here's how it works:  You'll sign up here and then you'll get an appointment time that works for you.  You'll also fill out a health history questionnaire.  On December 3rd, come with your family at your designated time.  A nurse will take their vitals.  Your child will be escorted to a patient table behind a privacy screen (parents are welcome to join), where he will be asked to lie down.  A few sticky tabs will be place on the child's chest, arms and legs.  A few teeny clamps attached to wires will be fastened to the loose ends of the sticky tabs.   Your child will be asked to be completely still for about 30 seconds.  And that's it.

If something shows up on the ECG (also called an (EKG), your child may get an echocardiogram (an ultrasound of the heart to check for structural abnormalities).  Many of the teenagers you've heard about in the news lately who have died of a sudden cardiac event were found (after passing) to have had a cardiomyopathy, or enlarged heart or part of the heart.  

ECGs detect approximately 80% of all potentially life-threatening heart conditions.  Yet they're nearly impossible to order for your family if there is no known prior heart event in a family member.  If you're lucky enough to get a prescription for one, it costs upwards of $90 per person to have done.  And then there's the question of who's reading the printout-- which can be a huge factor in detection.  At our December 3rd event, the very best pediatric cardiologists and electrophysiologists from A.I. Dupont Hospital will be reading your child's ECG.

So, sign up, and show up!  And tell others to do the same.  We're counting on you to help us keep kids' hearts safe.  

See you on the 3rd!

ps-- The event is free, but please think about bringing a donation for Simon's Fund!



Monday, October 10, 2011

Heart Screening Update

The heart screening event that we had originally planned for October 22nd has been moved to Saturday, December 3rd, from 8:30-4pm at Downingtown High School West.  All children ages 5-19 are welcome to participate.

An ECG will be performed on participants who have registered online before the event.   The test takes a few minutes and is non-invasive and painless.

Of the 3,000+ hearts that have been checked through Simon's Fund heart screening events, about 30 have been found to need follow up testing for potentially life-threatening issues in children who have no symptoms and no family history of heart conditions.   

Registration will open on November 4th at www.SimonsFund.org.  Please help us spread the word!

Tuesday, September 13, 2011

Eleven Sudden Deaths in Twelve Days

And still, a year after we were drop-kicked into the stunning reality that kids' hearts do stop suddenly and without warning, more and more and more and more kids are dying...

What's it gonna take to get EKGs to be offered to every family for every annual well-child visit so we can prevent this from happening so often?

Why don't we have a national database of children who have died from sudden cardiac arrest so we can start to piece together what's going on? 

See this news release:
http://myemail.constantcontact.com/PHW-News-Update--Eleven-Sudden-Deaths-in-Twelve-Days.html?soid=1101566562040&aid=fZdFaWjIYpI

More information on each of these cases is available at Parent Heart Watch's website.  

UGH. 

Thursday, August 11, 2011

Had To

Notice Quentin's chubby little hand on Devin's leg...

Sweet dreams on the Struble Trail... 

xoxo

Saturday, August 6, 2011

Quentin, Six Months

Quentin turned 6 months old on Thursday, and today, he decided it was time to sit up and play with his toys...

Happy to be upright!

 Some toys are kinda cool...

 ...but TRUCK toys are way cooler!!!

Timber!!!  Flashing those mutton chop thighs for Mom and Dad...

So, another milestone for Q!  Yahoo!

xoxo

Saturday, July 23, 2011

Vantage Point

Having just returned from Chicago, I asked Devin what his favorite part of the trip was.  "Serious Tower," he says, proud that he renamed the already-renamed iconic building that looms above the city and now boasts four sky boxes with clear glass floors that jut out from the side of the building.  "Of course!" I said, and then wondered aloud to him, "Do you think Aidan would have gone in the sky box with you and Finn?"

Once again, he reminded me that he and Aidan are (and always will be) kindred spirits.  "Mom," he said to me, all teacher-like, "Aidan was there.  Renember?  Angels are invisible."

A pointed reminder that I need to try to see life, for what it is and what it isn't, through the eyes of my five-year-old, as I search for peace.
 

Friday, July 22, 2011

Wow.

A little birdie told me today that a group of friends and neighbors here are taking turns watering Aidan's trees each week at the Brandywine Wallace Elementary School grove that the school community built and dedicated in his honor this past May.  It might not seem like a big deal, but I'm stunned and humbled by this act of dedication, of vigilance, of loving care by people who knew Aidan as if he was their own child and by those who had never met him at all.  I'm almost crippled by this generosity; I was hardly able to catch my breath when I learned of this.  Thank you, thank you, thank you, to those of you who are involved.  It means the world to Steve and I that you continue to care for and honor the memory of our son.

Wednesday, July 6, 2011

The First Annual 5K For Aidan J.!!!



It's been nearly three weeks since that amazing day, and we're sorry not to have written sooner. But it's taken this long for us to wrap our heads around that incredible, incredible morning on June 18th as crowds of people, both beloved friends and family as well as people we didn't yet know, came out for the inaugural 5K for Aidan J. Run/Walk event.

And what exactly did we witness??  Only a cozy gathering of almost 1,000 amazing kids and adults getting together to honor the memory of a certain special little boy whom we all miss dearly.  A sunlit, thunder storm-free, relatively low humidity day was a miracle itself for the Philadelphia area, but it only got better from there.



The Opening Ceremonies started with the voice of the Phillies, Dan Baker, greeting the crowd.  What an honor to have Dan take us through the day with that most recognizable of voices.  And what a gentleman...



We were also treated to the upbeat sounds of Steve from WMMR and the MM-Army as well as the band, "Some Assembly Required."  Voluntarily, they came, they set up, and they rocked, literally and figuratively.  They are as kind as they are talented.  Jordan, a student at Aidan's elementary school, sweetly and bravely sang "Somewhere Over the Rainbow" to the kids and adults in the vast audience.

Relatives, friends, neighbors, colleagues, and even people we hardly know swarmed Kerr Park to volunteer their time and talents to make the day a smashing success.  So many comments have been made since that day about our volunteers-- how incredibly, innately capable and friendly each and every one of them was as they learned the ropes for the first time. 


Special mention should be made to our Executive Race Committee, the staff from Aidan's school, Brandywine Wallace Elementary, the Downingtown West Cheerleaders and Basketball team, and my colleagues from Penncrest High School, who just about took over - in a good way, of course!  And special, special mention should be made of the Marple-Newtown Baseball team, who showed up in full regalia to help with the race.  Marple-Newtown is the rival team of Penncrest Baseball.  What a classy move by the kids to give up their summer league games to be there, and their coach, Steve Smith, for coordinating.





We got chills as the 5K Run kicked off.   Three hundred runners drifted down the street after the starting horn rang out, and it was a moment that sealed the gift of that day for us-- to see so many people, young and once-young, running for Aidan, for our cause, and for hope for our family.  It was a moment of awe for us.  Plans coming to fruition; dreams becoming reality.  Our little boy inspiring so many.  Sigh... the pictures in our minds, we will never forget.  Thank you, SO much, to all who were brave and ran in Aidan's honor.




So, check out the photo below-- we shut down Pennsylvania Ave.!  Our race team from Run the Day expertly timed all participants and posted results online within the hour-- how cool is that??  We've gotten some feedback from some runners that the flat, shady trail was great to run, but that they wish the finish line was back in the park, where their families could welcome them.  We're already working on that for next year-- we were lucky to get the street blocked for a few minutes this time around with very late notice as our registration numbers skyrocketed, and we thank Jack Law of Downingtown Public Works, Downingtown Police Chief James McGowan, Downingtown Fire Police Captain Carmen Semenza, and the Minquas Fire Station EMTs present on site under the direction of Jeff Gewertz for their support and staffing during our event. 


While the run was taking place, kids and their parents were entertained by The Magic of Kevin Joyce and snacked on Phillies cookies and cupcakes decorated by Amy Mills of Knockout Cupcakes.  Both Kevin and Amy donated their services for the event.   Downingtown Wegmans, Boot Road Wawa, The Purple Picnic People, Westside Wellness Chiropractic, East Brandywine Fire Company, Allied Barton Security, Professional Duplicating, Inc.,  Taylor Rental, The T-Shirt Artist, King Bagel, Provision Productions, and Croppers of Guthriesville, also graciously donated incredible amounts of time, talent, products, and services to help make this event top-notch-- and succeeded by a million miles!


Next, it was time for the kids to have a turn at going fast as the Kids Races commenced in the outfield of the softball field at the park.  What a blast!  And all who ran received a winged-foot medal (Aidan's favorite medal from Good Neighbor Day dashes) hung from a regal red ribbon (Aidan's favorite color).   It was so, so deeply touching to see Aidan's friends, classmates, neighbors, teammates, and cousins running down the field.  Each of the age group races was both exciting and heartwarming to watch; it felt like Aidan was cheering his buds on from above, a huge, excited grin on his face.  For many of the younger runners, we hope that their first experience in a race was thrilling enough to entice them back each June.  We're fairly sure we caught a glimpse of some future running stars!  Those kids were SUPER speedy!  Congrats to all our First, Second, and Third place winners and to all who gave it their best shot!




We were honored to have Congressman Jim Gerlach from the U.S. House of Representatives and Senator Andy Dinniman from the PA Senate lend their legislative support to the cause, as well as Michele Snyder from the national organization, Parent Heart Watch (www.ParentHeartWatch.org), Josh Weisman from Simon's Fund in Lafayette Hill (www.SimonsFund.org), and Tony Morelli from Peter's Place in Radnor (www.PetersPlaceOnline.org) to represent the three agencies that our event primarily supported.  They did a wonderful job reminding us why we were all there, teaching us about the prevalence of SCA, and compelling us to sign our children up for the October 22nd heart screening event that will be held at the Lionville YMCA (courtesy of Simon's Fund).  










(If you're interested in registering your children, ages 5-18, for the October 22nd heart screening event, send us an email at aidansheart@gmail.com.  Include your children's names and ages, and we'll get back to you regarding your registration.)


We gave out some awesome prizes for the raffle, thanks to Mitchell and Ness, The Philadelphia Phillies Organization, MLB.com, West Chester University Swim Program, Adventure Aquarium, Verizon FiOS, Penncrest Baseball Boosters, Bella Photography, and several other local vendors.


The raffle raised nearly $2,300 for a Josie Basta, the first-grader from our local Shamona Creek Elementary whose heart failed in October and has been replaced by a Berlin Heart machine while she waits for a transplant.  Read more about Josie at http://cotaforjosieb.com/.


During the Awards Ceremony, prizes (which included Phillies tickets, gift certificates to the Chester County Running Store, Phillies T-Shirts, bobble heads, and baseball cards) were given to the youth and adult 5K race winners.





Finally, (yes, unfortunately, we mean finally, as time got away from us...) families hit the trail for the 5K Walk.  To those families who participated in the walk, we thank you for your patience and determination to finish out the long (too long?) walk despite how far behind-schedule we got by that point.  We've already made adjustments for next year for you:  shortening the walk to 1 mile and having the walk take place along the paths in the park, to name a few.  Thank you, thank you, for walking in Aidan's honor. 


When all was said and done, we registered nearly 1,000 participants, had 100 volunteers pitch in, and raised over $35,000 in an effort to help end Sudden Cardiac Arrest in children.  What an incredible start to our annual event!!!!!


And what a tremendous way to honor our Aidan, who loved to run, loved his Downingtown, and loved to spend time in the summer with his friends and family.  He was most certainly pleased, looking down from above.  So thank you to our amazing support system that is our friends, family, neighbors, colleagues, and community.  You are our rocks.  Love to you all.  --Steve and Christy



SAVE THE DATE!!!  The 5K for Aidan J. 2012 will be Saturday, June 9th.  Mark your calendars and check back at www.5KforAidanJ.com or on this blog for more information.

Were you there, or did you contribute either online or via mail, and do you have suggestions or feedback?  We'd love to hear from you so we can plan for next year.  Email us at aidansheart@gmail.com.

Special, special, SPECIAL thanks to the amazingly talented, diligent, and well-networked members of our Executive Race Committee, for without you, this never, ever, ever would have happened (and definitely wouldn't have had such class!):

Scott and Melissa Marshall
Suzanne and David Akers
Carolyn and Ed Callahan
Carmen McDonnell
Jenna Kulp
Molly Keller
John and Bernadette Tracey
Mary and Craig Marshall
Margaret Silva

Special mention to Dave McDonald, Steve Kulp, Dennis McDonnell, Chris Keller, Jessica Anderson, Steve and Sue Mescanti, Chip Kriebel, Ralph Harrison, Eric Bucci, Sandy Carter, Dave Stango, Kate Groark Shields, Sean McKinney, Cathy Cornish, Kim Laverty, Kelly Hageluaer, Jim and Bill Monaghan, Jason Ritter, Kathy and Andrew Lovell, Maureen and Jack McGroarty, and Rich Scaricaciottoli.  And to the many, many, many more of you who have also provided support via emotional, monetary, or comedic relief.  Thank you.

Tuesday, July 5, 2011

Another One

In spite of our unbelievably successful event and the outpouring of support and generosity from our friends, family, and beyond, children's hearts are still stopping, and this one in our back yard:

Drexel Hill Boy (9) Dies of SCA

Monday, June 20, 2011

Happy Birthday to our Aidan J.

June 2010
7th Birthday Party
 
Always, always, always, always, always and forever in our hearts.
We love you so, so much, sweet angel.

Love, Mommy, Daddy, Devin, and Quentin

xoxoxoxoxo


More 7th BD Photos:

Bike Upgrade!

New Rollerblades!

And to our cousin Brandon-- Happy First Birthday.  xoxo



Wednesday, June 1, 2011

National CPR/AED Awareness Week: June 1st-7th

This week is National CPR/AED Awareness Week.  It's a great time to use the Parent Heart Watch educational resources, such as posters, brochures, public service announcements and more, to spread awareness about SCA in youth.  Write a letter to your editor, call your local television station, post a link to Parent Heart Watch on your Facebook page or make a presentation in your community.

Fact Sheet about ECG/EKG Early Screening:
Early Detection Can Save Hearts! Fact Sheet

Please consider signing your children (ages 5-18) up for our screening event, to be held this October in Downingtown, at www.5KforAidanJ.com No participation in the 5K required.  (You will need to enter credit card information to sign up, but you will not be charged).

Spread the word!  It could save a life.

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

Wednesday, April 13, 2011

Silva Boys August 2010

One more... just because...

Maine, August 2010

Silly

Rainy, rainy days... missing, missing my sweet boy... found a silly picture to cheer me up...




Maine, August 2010

Tuesday, April 12, 2011

Local Organization and CHOP Work for National Awareness and Change

I've just stumbled upon Simon's Fund, a non-profit established in 2005 here in PA that puts forth great information on SCA in youth and offers free heart screenings for school districts:
http://simonsfund.org/news/

Video on Sudden Cardiac Arrest (SCA) in Youth

Released by Parent Heart Watch last month... Please watch to learn more about SCA (8 minutes)

Phillies' Newest Fan

First day out of PJs and leisure suits-- we're excited to don our Phillies duds!  Go Phils!



Quentin, 9 weeks

Wednesday, April 6, 2011

Play Ball!

Tonight, Steve took Devin to get his first baseball glove.  He was sooooooooo excited (and so was Devin!)  This was a momentous occasion for both father and son, one of the few joyous moments in recent months, as a new glove, bat, and ball have taken up residence at Casa de Silva.  Devin kicks of his T-ball season with his first game on Saturday with the Iron Birds U6 team.  He chose Aidan's number (#1) for his uniform and can't wait to play like his big brother!!!  Swing away, Devin!

Saturday, March 26, 2011

Aidan's Genetic Test Results

I'm not really sure that Steve and I were ever hoping for the same outcome regarding the genetic testing for Aidan; it's been the one area of our journey where we've diverged a bit from our solidarity as bereaved parents.  He wanted the rest of our family to be spared the worry and medical intervention that would necessarily accompany a 'positive' result; I wanted to have an answer as to why my healthy little boy's heart suddenly stopped, without warning.  Now that the results are in, and they're negative, I'm still not sure either of us feels as if we've been granted presence of mind.

That's good, right? people say when we tell them.  It is.  It is, it is, I remind myself, because Devin and Quentin are most likely safe.  But it's still not an answer for my oldest son.  His death remains a mind-blowing, incomprehensible, irrational event.  Were we to be burdened with a positive result, in my mind, we'd then be able to move forward, test the rest of us, and thwart any future tragedies among us by arming ourselves with knowledge, medicine, and changes in lifestyle.

In talking with the geneticist at the testing lab, I was assured that, of the three main types of arrhythmia disorders for which Aidan's DNA was tested, we can be about 80 percent assured that none contributed to his death.  So, assuming the data is correct that suggests half of all unexplained sudden cardiac deaths due to arrhythmia occur as a result of a genetic mutation, we're fairly certain that Aidan did not die from something he inherited.  On the flip side, Mr. Geneticist reminded me, the medical community agrees that approximately half of all unexplained sudden cardiac deaths happen as a result of a 'spontaneous mutation' somewhere along the line of development, either induced by nature or by environment.  Huh???

And because defining the exact cause of death due to arrhythmia is a diagnosis of exclusion (or elimination), and because at this time, there aren't any more genetic tests available for us to pursue, we've reached the end of our road, for now, at least where scientific knowledge and access to that knowledge is concerned; our determination to continue our pursuit of an answer, however, is relentless.

I asked about long-term preservation of Aidan's blood, DNA, and tissue samples.  "Huh," Mr. Geneticist said, "that's probably a good idea," and I was told to Google 'biobanking.'  I was also reminded that genetics research is moving swiftly forward every day, and that costs will soon come down, and insurance companies are already starting to contribute more for families in need of testing.  Perhaps in five years, he said, maybe ten, we'll have another test that might yield results.  He was a nice man, very helpful in providing Genetics 101 instruction over the phone to my B+ Science brain, and I really did hear compassion in his voice as he ruefully explained that, for the few families such as ours who have reached a non-conclusion through this test, we're out of options.

So we know that we still don't know, and it feels like we know less each passing day.  We knew our son was one in a million, but never in this sense.  We know he was alive, healthy, happy, and having a great, carefree day one minute, and that he was gone the next.  Not being able to bridge the divide between his 'living' and 'nonliving' states of existence with some sort of rational explanation tears us apart inside.  The things you do to protect your children, to keep them safe, and to bring them back to health when you sense that they're not well; and yet this happens?  I'd never even known it was a possibility.

It's quite one thing for Steve and I to juggle this in our minds and hearts; quite another for Devin, who insists that he'll die, too, when he's seven.  Although I've assured him that he is healthy and will live through seven and beyond to old age, Aidan was healthy and he died, is his response.  I spew forth all the textbook-appropriate responses doled out to me by our therapists, but I don't believe them when they come out of my mouth.  I have the same question, and since Science couldn't help us avoid this tragedy, how can I trust Science when it tells me it won't ever happen again?

I've really hesitated in publishing this post.  In the past, I've only written when I wasn't feeling so much like I'm going insane, or like my insides aren't seething in pain and anger, or so resigned to this twisted reality that I want to dope myself up and not ever feel again.  People like you, however, have been asking for me to write, and to not worry about keeping a happy face while I do, and I'm grateful for the chance to write freely, no holds barred, for those who are up for it.  For those who aren't, I apologize if I upset you.  From this point forward, this blog might as well have a fat "Read at Your Own Risk" sign stamped above Aidan's picture.  I don't know where to go from here, with the search for Aidan's cause of death, with my struggles to manage the cards we've been dealt, with counterbalancing the joys and blessings in our lives with this awful truth, with the pressing, heart-clenching realization that we all likely will mourn Aidan longer than he was ever even with us.

Wednesday, March 16, 2011

Sudden Cardiac Arrest Cases on CNN

Martha Lopez-Anderson, President of the Parent Heart Watch group that funded Aidan's genetic test, has been an incredible source of support and information for me.  Martha lost her son, Sean, six years ago at age ten when he was rollerblading recreationally, was given a 'bogus' diagnosis by the coroner, and has been working tirelessly to help other families find answers as to why their children suddenly collapse and die from a heart event. 

Here is the clip of her interview about the recent sudden cardiac deaths of high school athletes:

http://www.cnn.com/video/#/video/health/2011/03/07/hln.young.athletes.hln?iref=allsearch

While the issue is prominent in the news at the moment because of the current series of events, it is our hope that awareness continues to spread in the coming months and years.  Martha and her organization, as well as several other organizations involved in similar ventures, are trying to change legislation to include mandatory EKG screenings, national standards for medical examiners, and a single national database for information collection concerning sudden deaths in children.  

Monday, March 14, 2011

Devin as Brother Billy Goat

So, our aspiring actor debuted last week in his class production of "The Four Billy Goats Gruff" (they had an extra student to work into the fold).  Devin was the Brother Billy Goat, and he was awesome:

Pausing to pose...

Camera-man Dad, sleepy Mom, and little peanut Quentin were there to shout, "Encore!"



Other notables this month: 
We signed up for Kindergarten this past Friday.  Unbelievable.  Already.  Where did the last five years go???

Because the floor in his bedroom has been hiding under piles of toys, efforts have been underway to reduce-reuse-recycle the ones we seldom play with.  Says Devin, of the castaways, "Another one for Home Goods!"  He means Goodwill...

A sleepover with Grandmom was probably the coolest mini-vacay ever.  A win-win-win event, from our perspective-- thanks, Grandmom!

First goal scored in indoor soccer this weekend-- T-ball opening day first weekend of April-- welcome, Spring!

And still, Devin's the only one able to get Quentin's full attention-- eyes opened and focused, head turned-- it's really quite incredible. 

Bravo!

Sunday, March 13, 2011

Quentin, One Month

Hi!  What's up with the Silvas, you ask?  I know, we've been under a rock this past month-- it's hard for us to find two free hands together to write, as Devin and Quentin are keeping us very busy!  Here are a few updates (I broke them into separate posts to make it easier to view the pic and video files...)

Enjoy!

Quentin:  Some Firsts

First tummy time on the playmat-- tough workout put him to sleep!

 
First full bath-- not sure about it at this point, but the lack of screaming and kicking indicated that he liked it a ton better than the previous sponge baths...


First night out of the cradle and into the big boy crib (3/12/11)... slept really well!


 
Perhaps because Aidan's Blue Bear and Puppy watch over Quentin and blow kisses all night long...



Next:  Devin (Brother Billy Goat), Update on Aidan's Genetic Test (3/13/11)