Healing of the Heart 2016

28 August 2016

Healing of the Heart 2016- how can I even put into words what this weekend meant to those in attendance. As a host, or core team leader as we called ourselves, all I wanted was for these new 25 moms to leave this weekend with the same sense of belonging that we all did from the first retreat that took place just under a year ago. I wanted them to have the most intimate- raw- and REAL experience possible. I wanted them to open up- cry- laugh- dance- and cry again. I wanted them to connect- heal- feel safe- and leave with a sisterhood that would forever change the rest of their lives- the rest of their journey through grief.

The first night was more than emotional- hearing about each one of these angels- when and how they were welcomed into this world, how they spent their way- too- short of lives, and then ultimately how they died- and watching what their deaths left behind. They left behind a beautiful mother who is shattered internally and externally- a courageous mother who is not only still standing, but somehow found a way to bring herself to a retreat where she knows no one- but trusted in us to handle and care for the most precious and intimate part of her life. A broken soul- whose life would be so much more full if only her baby were still alive- if only we could turn back time and change each and every path of these mothers lives. But I can’t. We can’t- they can’t. And so because of this the only thing we can do is walk through this path together- hand in hand- hearts intertwined. A sense of belonging- a sense of understanding- a no judgment zone where its ok to cry so hard you can be heard across the mountains- and then moments later, dancing like a fool to a rap song from the 90’s.

This years retreat was so much more than I ever could have imagined it would be for these women. Watching their transformation over the 4 days we spent together is something I simply cannot put into words. Watching as their smiles changed from fake and weak, to real and strong. The joy and peace that is in my heart watching their connections grow stronger, their hearts healing- if even just a little bit- their weights being lifted- their acknowledgment that never again will they feel alone in this world. This weekend is more powerful that words could ever do justice. This weekend brought us back to life. It brought our children back to life.

Of all things I do in Hayden’s name, this is by far the most impactful. This retreat not only gives these mothers back a piece of themselves they were so desperately searching for, it gives that same person back to their surviving family. I am so honored to be able to create such a safe, tranquil space for these most deserving women whom I will forever be connected to and will always consider my sisters.

Special thanks to my CORE team who held my hand and walked alongside me through the last 8 months planning the perfect weekend for these mamas. And to the many heart organizations and families who sponsored a mother to attend- what a gift you have just given a grieving mother and her family. So many people donated items for welcome bags, snacks, desserts, and money to fund the memorial projects and other special workshops and activities we were able to hold. It is because of you that this weekend was able to happen- you allowed myself and the rest of the core team to live out our vision for these mothers and we are forever grateful for your support.

Four years without you...

16 August 2016

Oh sweet Hayden...

Its been four years since I last held your tiny hand, kissed your swollen face, and held your lifeless body in my tired arms. The day we said our goodbyes to you will always be the saddest, most tragic day of my life. I still remember that day like it were yesterday. I remember feeling like I must be in a nightmare- this couldn't possibly be my life now. I had no idea how I would live without you or how it would change every part of me. How loosing you would alter me so intensely. How every day I wake up and you are still the first thing on my mind. Sometimes I smile, sometimes I cry- but I always, always think of you.

I think of your smile, your eyes- your sweet little body laying next to me. Your little legs kicking and your arms going- your excitement at the start of a new day together.

I think about how old you would be now- if you were still here. You would be four (almost four and a half!) years old- would you still have that same infectious smile and soulful eyes? Would you wake each day with the same excitement as you did when you were a baby? My mind always says yes... You would love the simple life we live- spending most of our days in this house just playing and being together.

If time allows, I start to reflect on the life you did have- the good, and the bad. The days we spent at CHOP- just me and you- and all of your care takers, of course. Those days are oddly my favorite to look back on. While most were hard, and at the time I hated being in that place, they are what I think back on most and smile. We spent so many hours just sitting together, listening to Sara Groves, or lullabies we grew to love. I'd just hold you for hours on end- talking to you, snuggling with you- singing to you. Doctors and nurses would come and go- but otherwise we were on our own planet in there together. We'd play with your favorite toys- work on your tracking and wait as patiently as we could until daddy and Jackson would come to see us on the weekends.

Jackson was the coolest person in the world in your eyes. I have so many memories of you just watching him play and talk and you just smiling up at him. The love you had for each other was mutual- and so beautiful. He couldn't wait to play with you- he had it all planned out. He still sometimes talks about how much he misses you- his playmate. And if possible, my heart breaks a little more every time he brings it up.

Your little brothers know you well- we make sure of that. Hudson includes you in everything we do- we sing songs with all our families names- and he always adds you. Whenever we talk about going some place, he always asks if you will be there too- and our response is always the same 'Hayden is always with us'. We say that because not only do we truly believe it, we also feel it. Greyson is learning all about you, too. He sleeps in your cove in our room, and every time he wakes from a nap, we pause at your big photos and say hi to you- he smiles so big and reaches out to touch your face- every single time.

Its strange living a life without you in it. Even though you only existed on this earth for 5 months and 4 days, you left such an incredible impact on my heart and without your physical presence, life often feels voided. But you have gifted me so many wonderful things, I often feel guilty when I have my own personal pity parties. Life is so full around here- between your brothers and your foundation- our hands are full- but my heart just isn't. Although time has healed some wounds like so many said it would, the void without you here seems to never go away.

Sometimes I feel like you were all just this great big beautiful dream- were you real?

Of course you were real- you are real. You are my second child- my hero, the boy who fought so hard to stay here in my arms.

Reliving the last three days of your life is pure torture- year after year. The memories of those events haunts me so deeply- I can't escape it. I still can't figure out God's plan- though I am desperately trying to.

I remember the extreme pain that started inside of me the day your code went off. I never knew a pain like that existed. Every time I look back on that night I see myself in a ball on the floor in that hallway screaming-the start of my real- life nightmare.

And then a different, deeper pain filled me the night before you died when I tried everything I could to get your EEG to show some sign of life. Your fathers' face and shaking his head 'no' is another visual that I just can't get out of my head. Defeat. We had lost. It was then that I realized it was over- you were gone. Just like that, you were gone.

The day you left this earth an even deeper pain filled me, one that is still inside of me and will always remain, this I am sure of. A pain so intense, so excruciating, I still to this day cannot believe I survived it. No doubt I have your brother and daddy to thank for that.

Walking out of that hospital without you left my insides on fire. That fire is re-lit whenever I put myself back in that moment. Another visual of me collapsing in the hallway wailing for my baby. Your nurse holding you on the other side- probably sobbing too. It all just seems so unreal- an impossible reality that yet somehow is. I am still trying to figure out why a mother should ever be asked to live a life without her child. Where is the surgical process to fix MY half a heart?? There isn't one- because its impossible to fix.

Four years ago today my life and everything after it was drastically altered- and not in ways I planned for. I wish I could go back in time and change it all- change what happened to you- to us. What I wouldn't do to change it...

But since I can't...

Thank you. Thank you for choosing me. Thank you for bringing me such purpose in life and teaching me the value and meaning to my life. Thank you for teaching others those same values and meaning. Thank you for making me a better mother. Thank you for continuing to show us your love through the signs you send to us and those around us. Thank you for guiding me in your legacy and pushing me in the right directions. Thank you for giving me the strength to survive this awful tragedy that has happened to our family. Thank you for being my hero and my inspiration. Thank you for choosing me...

Hayden's Heart Monthly Beat- AUGUST

01 August 2016

Looking Back at July- Golf Outings

Thanks to all who participated and supported our 3rd Annual New Jersey golf outing at Preakness Valley Golf Course last Friday July 15th, honoring and benefiting Lena Gonzalez and family!

What a beautiful and HOT day we had with almost 60 golfers and over 15 sponsors- making this yet another successful event! It’s so nice to have so many of our golfers return each year- and a bonus when some new join us as well! Thanks again for spending your day with us! (Full list of sponsors listed on last page of newsletter)

It is because of your support that allows us to carry out our mission in Hayden’s name- THANK YOU!!!

On Friday July 22nd, we hosted our 4th Annual PA golf outing at Wynding Brook honoring and benefiting Hope Goulet and family from Yakima, Washington.

It was another HOT day, but beautiful weather once again! It was so nice to see so many of the same supporters there for four years in a row- and some new faces too! Thanks to all who golfed with us - we had almost 80 golfers and a handful of sponsors who made this year successful - and lots of fun!

Shout out to our PA board members- Tatum, Becky and Shannan for running this event- we are so thankful to you for your love and dedication to Hayden and our mission!

AUGUST events!

4th Annual Blood Drive!

In just a few days, we will be hosting our 4th Annual Blood drive in honor of Hayden- and in honor of all those who donated so that he could live the life he had.

Hayden received three blood transfusions throughout his short life and was on ECMO for three days before he passed (equal to approximately 20 transfusions). Without those transfusions, Hayden would not have survived- and without being on ECMO, our family would not have been able to give Hayden and the doctors time to try to save him, also giving us time to process as best we could, and say our goodbyes with him still alive in our arms.

This 'event' is so important and special to me because people are coming just to GIVE- not getting anything in return. The feeling I have and the emotions it brings as I see the room fill with both familiar faces and new supporters is just so wonderfully overwhelming- its hard to put into words.

Please consider registering for our 4th annual blood drive- our hope is to surpass our donated amount last year, which was 48 pints! SO- lets shoot for 50!!

Thanks again for all of your support- hope to see you on

WEDNESDAY, AUGUST 3rd from 3-8pm at the Elks Club in North Arlington, NJ!

Please sign up online:

enter code: Haydens Heart

or call: 1-800-RED-CROSS

Smile Sacs

THANK YOU to all who donated items for our ‘Smile Sacs’ again this year! This is the 4th year we have compiled care packages to deliver to pediatric cardiac units

on August 16th in honor and memory of Hayden and the last day I held him in my arms.

This year we are sending packages to Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Children’s Hospital of New York, and Geisinger Medical Center in Pennsylvania- totaling 60 care packages!! Stay tuned next month for pictures!

Workout With a Cause!

So excited to announce this incredible fundraiser hosted by VIP Fitness in Lyndhurst- all details are below or on their website:

Save the Date!

1st Inaugural ‘Heart of Gold Gala’- Friday September 30th in Wood-Ridge, NJ!

This event will honor pediatric cardiologist Dr Chitra Ravishankar from the Children’s Hospital of Philadelphia, and heart warrior Richie Landreville from Morristown, New Jersey.

Formal invitations were sent out the end of July- if you did not receive one and would like to be placed on our mailing list, please email us at .

If you would like to purchase an ad in our program or are interested in purchasing tickets, please visit our website!




3.12.12 - 8.16.12

copyright 2012 - 2015 hayden's heart inc. 501(c)(3) all rights reserved blog design by Madison & Mi