2017 5K success!!!

24 March 2017

I woke up on the morning of March 18th feeling spent. Feeling drained and unmotivated. 'Celebrating' Hayden's 5th birthday the week before had taken so much out of me emotionally. I knew 5 was going to be hard- so hard- and the month of March felt like it was swallowing me whole and while I was trying hard to get out of my funk, I woke up the morning of his 5K feeling like I had failed at my attempts.

I showed up at the park where 20-some people had already been setting up for over an hour in the freezing cold. An event for my foundation- for my son. And all I wanted to do was sit in my car and cry. Feeling 'done' with hosting events in his memory, wishing with all I had that he was with me- that I could stop telling people he died- that I would be able to tell them he was a spunky 5 year old who was beating the odds.

His birthday was taking me under- my grief was winning. 

I got out of my car and started walking around the park in what felt like a huge fog. I still felt like running back inside my car and hiding. But as I slowly started to take it all in- started looking around at who was there- watching all these people moving around the park like a little 5K army- was humbling and moving. It didn't take me long to SNAP out of it- to realize that yes, Hayden died. Yes, I want him back more than I want breath in my own lungs- but look at the GOOD that he has left behind. Look at all of these people out here on a freezing cold Saturday morning setting up for hopefully a packed house in just a couple hours.

And despite the cold- thats what it was- a packed parking lot full of sponsors, vendors, food, kid activities, runners, walkers, strollers, high school teams, family, friends, heart warriors, heart mamas- all there supporting our mission- Hayden's legacy. Because of the cold, we had less people register the day of the event than years prior, but despite that, there were still over 500 participants, over 50 kids in the Fun Run, and around 650 people braving the cold, celebrating a very special boy.

In addition to celebrating Hayden's 5th birthday, we also honored heart warrior sisters- 4 year old Aylin and 8 month old Isabella Conil- of North Bergen, New Jersey- both with a CHD called Tetrology of Fallot. We were honored to have their parents Julio and Yenni participating and expressing their gratitude for the support given and we hope the proceeds from the event will assist them in their journey!

I wish I could find a way to express how grateful I am to everyone who made Saturday the success it was. When I look back on March, I will of course know that it is another birthday we celebrated without him, but because of all of you, its so much more than that.

It's about the committee of volunteers who spent over 6 months planning and preparing for one day. It's about our neighbors who year after year help set up the event, man the grill, and stick around to clean up. It's about my family and best friends who travel every year to be there with me to celebrate Hayden and his legacy. It's about Pat from Home Depot who has been with us all 5 years and his smile brings a smile to my face no matter what I have going on inside of me. It's about tons of DONATED FOOD from Blimpie, Shoprite, Nonna Lisa Pizza, Dunkin Donuts, Brothers Bakery, Villa Italia, and much more. Its about the Fun Bus calling me a month before the event and telling me they read what we are all about and want to fully DONATE their bus for the day because they are so touched by what we are doing- and Party Magic being there for the third year in a row, donating their time for the same exact reason. It's about those delicious mini cupcakes all the way from SugarBabe in Bethlehem PA.  Its about THREE EVENT SPONSORS!!! and all the other companies and businesses who felt our mission was worthy of a generous donation and of their support.

Its about high school kids running, walking, volunteering- just being there helping us build a future who knows Hayden's Heart and will keep his legacy going for years to come. 

It's about having memories from this event to look back on and thanks to PhotoSesh and Real Arch Photography, we will have plenty. It's about those Star Wars guys from a Galazy far far away... It's about the heart community coming together- supporting one another- raising awareness for our children and for Congenital Heart Defects. It's about all of you who took time out of YOUR day to honor Hayden- raise funds and awareness for our mission and for showing us year after year that even though he is not with us, he will live on forever in your hearts.

Please know that there is no greater gift you can give a bereaved family than that....

Photo credit: PhotoSesh 

To view more pictures from this years 5K, please CLICK HERE.

Visit YouTube to see a video on the 5K- generously created and donated by Real Arch Videography

Surviving Childloss Together

03 March 2017

Men are from Mars.
Women are from Venus.

I've heard that saying all throughout my life and sure, I knew in the first few years of marriage with my husband that we were different breeds. Multi tasking is a trait most women excel in- while most men can't seem to find a way to wash dishes and hold a conversation at the same time. Most women are organizers –or at least strive to be in some ways- we do and want things done in a certain way. While men- they just want to get the job done, and specifics as to how to get it done aren’t always as important. There is nothing wrong with this- and this is in no way a man- bashing blog, I am simply pointing out some ways that I have found my husband and I – and most couples- are very different.

However, now that we lost a child together and are trying to maneuver through that tragedy, I can fully say that yes- we are from different planets. For me, the first sign of this was just about 10 hours after Hayden had died. We said our final goodbyes to Hayden and were leaving the hospital to go home without him in our arms for the very first time. Just getting me out of that hospital was a struggle in itself. But the two-hour car ride home- pure torture.

It took me over 30 minutes in the car to finally calm my outward sobbing and I sat there in silence next to my husband trying to find a way to catch my breath for the first time in quite a few hours. I remember literally telling myself to take a deep breath- open up your lungs and breathe deep. Just as I was doing that my husband looked over at me from the driver side-, which that alone still shocks me - that he was able to make that trip home- but anyways he looked over at me and said ‘So, I was thinking we could have him cremated so you can put his ashes into a necklace and always have him with you.’

Now looking back on this 4 years later, it is truly so sweet and thoughtful. But at the time, I was literally trying to retrain myself how to breathe after the loss of my son. I remembered slowly moving my head to look at him and whispered to him ‘I'm just trying to figure out how to fully breathe without my son in my arms. I don't know what you're talking about right now.‘

It's been so long since that moment happened that I feel silly even asking if it offended him at the time but I truly just felt at that moment that we were from different planets, and may have actually looked at him as if he had two heads- or some alien-like feature.

Surviving a marriage after the loss of your child is not easy. However, most seem to find a way to do it. Statistic show that 16% of married couples divorce after the loss of a child. And while that statistic isn't as large as I thought it would be, it is still upsetting and scary to think that I -or one of my angel mom friends - could fall into that category.

I imagine most grieving couples agree it isn’t easy. For me, the first few months to a year were pretty difficult to navigate through not only my loss, but also now living with a man who fathered my deceased child, yet somehow seemed to grieve completely different than I was. I would often internally remind myself that yes we did have the same loss - and remind myself that although I felt it, I wasn't really alone. That he had lost the same as I did.

I remember a few months after Hayden died I was in my kitchen washing dishes probably crying like I often did in that space. A song came on that Rob must have liked because the next thing I know, he was in the kitchen singing along happy as can be. And I think I actually looked at him and said ‘How are you singing right now? How are your insides so joyful that you could actually be singing right now?’ I probably should've kept that thought to myself but my insides were still so damaged and so broken that the thought of actually being so joyful and singing along to one of my favorite songs just felt so foreign to me and I couldn't believe that the person standing next to me who experienced the exact same loss that I had was able to do that.

From two different planets.

I cried all the time, he rarely- if ever- did. I went to the cemetery all the time the first year or so- he rarely did. To this day I wake up every holiday with Hayden’s absence on my mind- wondering how to get through it and trying to put a smile on my face for my surviving children, he often questions ‘What's the matter?’

Again, I am in no way bashing my husband or any other father that grieves this way. I am just simply stating that we are very different. And navigating through the loss of your child with your spouse who grieves completely different than you is difficult. It doesn't mean my husband loves him any less. It doesn't mean that he's not sad. It just means that we choose to express it very differently. I've often asked him ‘Why don't you cry? Why don't you seem sad? Why does it feel like you've moved on?’ I know he feels like he needed to be strong for me every single second of every day. Even though I would often tell him that if there's ever a time for a married couple to completely lose their shit together, this would be the time.

Rob and I had always been such a great team when it came to Hayden's care. And we continue that through with his legacy. I distinctly remember the doctors and nurses telling us the days he was dying what a great team we were. We literally took turns crying. I would stand over Hayden and have my moments of sadness while Rob would either rub my back or walk away and give me space. And then when I'd gotten myself together he’d take his turn. We did that for three days straight. But, for whatever reason, once he died, I guess maybe Rob just saw me as even weaker and just felt the need to be stronger.

Now that we are 4 1/2 years into our loss, I know Hayden's death will not tear us apart. We've made it through- but it wasn't easy. Very often friends would say to me how impressed they were with how well I was dealing with our differences in our grief. How they don't know if they would be able to handle grieving alongside their husband so differently. For me, it was just about respecting each other. Even though we grieve differently, I respected his path. And he respected mine. That's not to say it wasn't hard. That's not to say there weren’t a lot of times where I questioned his grief. And not to be judgmental, just to understand. I just really didn't understand how our loss was the same but so different. Maybe he felt and feels the same way. All I know is that I'm proud of us for not only surviving the loss of a child but for surviving our differences in grief. For respecting each other and knowing that we were doing what we individually had to to get through it. We may not understand what the other is thinking, I may never figure out why he doesn’t express his grief in the same ways I do- but we make a great team- same planet or not.

- Ady (Hayden’s mommy)


I think the husband/dad role in a relationship when dealing with grief is far different than that of the wife/mother. These thoughts were formed based on my own experience as well as the experiences of some other men in the same situation. It would be very easy for someone to just say that men hide their grief because they inherently don’t enjoy talking about their feelings. While this may be partially true, I think there is more to it than that. When you lose a child, there is so much grief and sadness that it’s hard to even put into words and if you have not gone through it, honestly you can’t really relate. It’s nothing like losing a relative or someone else you know. As a dad who has lost a child, I don’t think I can even fully understand what my wife was feeling in our early stages of grief. She was the one who was pregnant with him, delivered him, and was with him 98% of her time. So early on after Hayden passed away, if there was a time when Ady seemed happy or in a good mood, there was no way I was going to upset that and possibly bring up my grief. Other dads have brought up this same idea. It’s not the men are not grieving, although sometimes it could seem that way, but more so that we don’t want to put our wives right back into intense grief because we know that’s where it will lead. If I needed some time to be upset, I’d do it in private, not because I didn’t want to show my feelings, but rather I was afraid of what those feelings would trigger for Ady. It’s not that I was trying to be the “strong” one. What I was trying to do was when I did see glimpses of Ady not in deep grief,  I just wanted to hold onto that.

- Rob (Hayden’s daddy)

Hayden's Heart Monthly Beat- MARCH

01 March 2017

Hayden’s Heart Monthly Beat


Hayden’s Heart 5th Annual 5K

Saturday March 18th

We will be celebrating Hayden’s 5th Birthday in SUPERHERO style! Please join us and come dressed as your favorite superhero - or bring your own superhero squad!

This event is family and pet friendly - with face painting, arts and crafts, and a Fun Bus for the kids, as well as food trucks, grilled goodies, and a special birthday tribute to Hayden with bubbles, cupcakes and balloons!

Participants can walk, run or stroll in the 5K – and kids 12 and under are FREE and eligible for the kids Fun Run starting at 10:30am.

First 100 to cross the 5K finish line will receive a medal for their achievements!

Register using the link below:

Some sponsorship options and team discount rates still available- please email for more information!

Hayden’s Favorite Things Care Packages

Every March for the past 5 years, we have delivered ‘Hayden’s Favorite Things’ to Pediatric cardiac hospitals on the east coast. This year we are beyond grateful to have gotten ALL items donated for these packages!! THANK YOU to the following companies for making these very generous and much appreciated donations. 

We are also thrilled to once again have our local girl scouts troops #95952 + #97108 from North Arlington, NJ help us compile the bags for these special warriors! 

Because of the generosity of these companies and the volunteer efforts of the girl scouts, we will be sending 75 care packages out to 5 difference east coast hospitals! (Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Columbia New York Presbyterian, Boston Children’s, and Geisinger Medical Center)


MANY THANKS to all who participated in our 2017 challenge for Heart Month!! #singyourheartoutforhayden was a blast!! We loved watching your videos throughout the month all over Instagram and Facebook!

Spreading awareness for Hayden’s Heart and Congenital Heart Defects is a large part of our mission and we loved having you play a part in that branch this month- in such a cheerful and upbeat way!

If you missed the challenge, you can view some of the videos on our Facebook page, and contributions towards helping us support families affected by CHD are always welcome and appreciated!

Hayden’s Holiday

37 families from across the country submitted applications for our first year of offering bereaved heart families a ‘Hayden’s Holiday’. We received applications from as far away as the UK, Hawaii, South Dakota, Mississippi and Wisconsin; not to mention the number of applicants we had from up and down the East coast. To help us organize all of our applicants and choose winners fairly, we used a random number generator to select the 6 recipients of the first Hayden's Holiday grants.

Three of the recipients of our Hayden's Holiday grants lost their only child to CHD. Two of these couples are avid outdoorsmen and would like to go camping and hiking, while the other couple is self-described foodies, looking to explore a new town. Another one of our selected families has two children (one being the 11 month old twin of their heart angel) and also love to explore the outdoors, stating that both of their children, "love anything water related." We look forward to helping these Indiana boys splash around in the ocean! Our winner from the Southeast region had a straightforward request on behalf of their three year old - "anything Disney related please!"

Over the next few months, our team will put together extraordinary getaways for our recipients. Later this year, we hope to be able to share with all of you some of the families' experiences (and maybe even a photo or two!) from their Hayden's Holiday family getaways!

3.12.12 - 8.16.12

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