2018 Year in Review

Rob and I want to take a moment to express our deepest gratitude to ALL of you who have supported our mission and efforts in supporting the Congenital Heart Defect community in honor and memory of our sweet Hayden. This past October we celebrated SIX years since founding his legacy and with each passing year we are again reminded of the impact his life has left on not only us – but on all of you as well.

In 2018, we hosted our annual 5K for Hayden’s 6th Birthday, TWO summer Golf outings – one in Pennsylvania, and one in New Jersey with The Madison Rose Heart Project – and our ‘Heart of Gold’ Gala in New Jersey took place just this past October.



With over 1000 people in a cumulative attendance and over $140K raised, we are once again left humbled by the unconditional support and outpouring of LOVE for not only Hayden but the entire CHD community. Each of these events honored a heart warrior and family and a portion of the proceeds from each event was donated to that family.

Along with these events, we also hosted three retreats – two of our 'Healing of the Heart' retreats – each supporting 25 mothers who have lost a child to a CHD, and our first ever couples retreat – Woven – for couples who have lost a child to a CHD. We are looking forward to expanding our reach to others in this community in 2019.

We sent 100 ‘Hayden’s Favorite Things’ care packages in March to pediatric cardiac hospitals on the east coast in honor of Hayden’s 6th birthday and donated $10,000 to heart families across the country for hospital bills, hotel stays, and other expenses that pop up unexpectedly when caring for a heart warrior.

Our Grieving Hearts care packages support families suffering the loss of a heart warrior and this year we sent out over 100 in less than 10 months. We continue to send our love to these families and know that the journey ahead is difficult.

Hayden’s Holiday also supports the loss community – this past year we sent 5 families on getaways with loved ones – including Great Wolf Lodge in Niagra Falls, American Girl store and Great Wolf Lodge in Minnesota, the Monterrey Bay Aquarium in California, Wild Dunes Resort and Tybee Island -  both in South Carolina.



Our 2018 Giving Tuesday was a smashing success - we raised over $10,000 in just ONE DAY!! This campaign supported Hayden's House of Healing - our newest endeavor in which we are raising funds to purchase our own retreat house to host retreats year round for all grieving the loss of a child.

With all that being said, we feel 2018 was HUGE in accomplishing our mission of supporting families affected by Congenital Heart Defects and we are so grateful to YOU for playing an integral part in making all of this happen. Each and every time someone donates to Hayden’s Heart – whether monetarily or of their time – it makes a MASSIVE impact on the families we support and we are forever grateful to each and every one of you for your dedication to our mission and to Hayden's legacy. He lives on in us and through us...

WOVEN 2018

It has been a week since we came home from our first couples retreat – WOVEN – and I still don’t know if I have the proper words to express the impact it had on not only MY marriage, but of all of the couples that experienced it alongside us.

I was, admittedly, nervous as the weekend approached – having never done this type of a retreat before I wasn’t sure it would be as impactful as our mom retreats have been. The bar was set high – and I didn’t know if we’d come close to reaching it at this retreat. 

BUT – it wasn’t too far into the weekend that I realized that it was working – it was happening – couples were sharing – and not just with each other, but with everyone. Dads who had barely spoken their childs name were not only saying their name, but sharing their story. Moms who hid some of their deepest feelings from their spouse were digging in deep and finally letting it out. 

Couples were learning to understand their spouse through their grief – learning to appreciate and accept that often men and women grieve very differently – and that its ok – it might even be beautiful. 

With that appreciation and understanding came discussions on how to grieve TOGETHER – how to meet half way – how to weave their grief into their marriage, not treat them as separate parts of their relationship but rather as one in the same. 

I’d like to think this retreat strengthened these couples not just for the time we spent together, but that it did for them what it did for Rob and I and has forever changed the way we will grieve our son as a couple. The tools Rob and I gained from this time together are irreplaceable. 

I am so grateful to so many for loving on our couples with their talents, gifts and support. Their generosity made this weekend stunningly beautiful - as well as kept us very well fed. I am so grateful for our co-hosts Matt and Stephanie for taking the leap and making this happen – all in honor of their sweet Madison. I am grateful to the 7 other couples who jumped in head first and allowed this weekend to do for them what it was intended to. Most of all I am grateful to my husband for being so vulnerable – so compassionate – so empathetic – so invested – in these couples and mostly the dads. I am truly in awe and am beyond blessed to have him by my side through not only this retreat but moreso through life – for better or worse.

We can't wait to experience this again with more couples - and once again witnessing what these retreats do for those grieving just makes my passion for a retreat home of our own burn that much stronger....

Healing of the Heart Retreat - Fall 2018

Last year, I was at lunch with Ady working on Hayden’s House of Healing - talking about the impact these retreats have, how many more people we will impact when we have a house, and how badly we need this space and this dream to become a reality. I was suddenly overcome with emotion and words came pouring out of my mouth. “What if we add a second ‘Healing of the Heart’ retreat next year and I lead it?” I was taken aback by my own words, but in that moment I just knew how right it felt.

This past year of planning has been filled with so many emotions. I knew the impact this retreat had on me, and I wanted so badly to create the same space of healing for these brave new women we were about to meet. I had many conversations with Ady about what to expect - but I’m not sure anything could have truly prepared me.

As I stood there surrounded by my amazing core team, we opened the door and in walked 24 beautiful mamas. Each of them took a leap of faith, traveling from all over the country to a retreat where many of them knew no-one, in the hopes that they could begin to HEAL.

These brave women bared their souls and shared the most intimate part of their lives - they shared their children, they shared their grief, they shared their true selves. While their stories were all different - some were just a few months out from their grief, some had been grieving for more than 10 years; some had children who lived hours, some had lost teenagers - the absence in their hearts was the same. I felt the pain in every story, but I also felt surrounded by such a deep love.

Yes, the weekend was filled with tears (a lot of them) - but it was also filled with laughter and singing and dancing (a lot of it.) The bonds forming between them could be seen almost immediately. They were organizing activities in their downtime and making it a point to know each other’s names and their children’s names. I watched them walk in on Thursday as strangers and leave on Sunday as if they had known each other their whole lives. And I knew in that moment, that we had done what we set out to do. They had a space to connect with one another, with pieces of themselves again, with their child. They understand each other, and now they have a tribe of women by their side to walk through their grief with.

The impact these women and their beautiful children had on me was beyond measure. I am humbled and honored that they took that leap and trusted us. I am filled with so many emotions as I think back to that weekend - but mostly I am grateful. Grateful for each and every brave mama there that weekend, including my amazing core team and those who gave their time to help. Grateful for everyone who donated to make each woman feel so special and loved. Grateful to my angel, Ella, for continuing to guide me and show me my larger purpose. Grateful to Ady for saying ‘yes’ and agreeing to let me take this on. And mostly grateful to Hayden - for continuing to be an inspiration that allows so many broken hearts begin to heal. 

Written by: Stacey, Fall 2018 Healing of the Heart retreat lead

I remember...6 years ago

I awoke with a heavy heart this morning... 6 years ago we buried you...I remember so much of that day. I remember waking up again in shock thinking I can’t believe this is really happening. I remember my neighbor coming over sitting on the couch with me crying so hard he couldn’t talk. I remember putting on the same black dress I had worn to my grandmothers funeral years before. I remember walking into the cold funeral home with photos of him everywhere - and still feeling like this must all be some big mistake - some awful nightmare. I remember taking Xanax and hoping that would numb me just a little. I remember holding onto his lovey as each person approached me - begging this little plush animal to bring me strength from Hayden. I remember seeing so many people come through that line - people from all over the country that I never expected to see. People who drove long distances just to hug me and say ‘I’m so sorry...’ people who came to pay their respects to our family and to a baby boy whom they never met - but who touched them deeply.

I remember my aunt walking up to me. She’d traveled from Canada - and she too had a baby die 20+ years ago from HLHS. I remember sobbing loudly and finally releasing all the pain inside - she too knew that pain. I remember the whole football team coming through - and I remember feeling bad for them - how awkward that must have been for them and how foreign.

I remember being at the cemetery with our family and close friends. I remember standing there and not being able to move once the service was over. I remember my best friend coming over to me and putting her arm in mine and physically walking me down to my car - Rob’s best friend did the same for him.

I remember being at the wake - or whatever you call that place afterwards - and taking another Xanax. Needing some more numbness. I remember trying to make that part of the day a celebration of life - hanging his clothes on a clothesline, his photos all over, favorite toys, baby book... I remember going in and out of confusion - like a fog - all my favorite people from all walks of life were in one room - and I loved that - but hated so badly why.

I remember the hours and days that followed - wondering how I was going to make it through this. How I was going to go to sleep each night and wake up each day without him. I remember wondering when this pain in my chest would ever lessen. When I would ever live a life full of happiness and joy again. I assumed I never would - and was trying to figure out how to accept that. 

All of these memories flooded back this morning before I even opened my eyes - and I could feel tears streaming down. And then I opened my eyes - and my eyes saw the most perfect sight - my rainbow, my sidekick lying next to me. A few seconds later he opened his eyes and said 'Mommy its just me and you!' And we cuddled for a minute. Soon after he asked me to come with him. He pulled me into our cove where we had just gotten a new couch since moving Greyson into the boys room and he snuggled with me on the couch - telling me he loved me so much, giving me hugs and reminding me how beautiful my life is. Reminding me that I live a life full of joy and happiness and that the acceptance I have in my heart isn't about living without it - but living a life full of it. In that moment I felt tears again - and not just for missing Hayden, but also for deep deep gratitude to God for blessing me with this child - this life I live. Full of love - full of joy - full of memories of a boy we lost, but will never forget. 

Acceptance

There are said to be five stages of grief – denial, bargaining, anger, depression and acceptance.

Over the past six years I have found myself in and out of the first four stages – often times overlapping a few at once. The first two – denial and bargaining – played a huge role in the first year or so after loosing Hayden; but after time, the shock of not waking up next to him faded. And with that progression, bargaining to get him back also declined.

However, anger and depression have found their way back to the surface intermittently over the past few years. At times I could see them coming from a mile away and almost prepare myself, other days it would come out of nowhere, like an unexpected punch to the gut and when it came it would (and still does) hurt like hell.

Acceptance though, that always seemed to be the stage that I thought I would NEVER reach. How would I ever be able to say that I accept his death? Accept that a doctor made an irreversible error that ultimately took his brain – and life – from us??

It wasn’t until recently while in deep conversation with a fellow bereaved mama that I realized that accepting his death didn’t mean I was saying that what happened to him was OK, or that I was moving on – but rather I have accepted that this is where God wants my life to be right now. And while I do still wish that it weren’t, that he were still here, that I never had to learn what it meant to accept Hayden’s death, I DO accept my life for what it is, and not only do I accept my life – I truly LOVE IT!!

I can say without hesitation that I truly have a beautiful life. It’s not perfect, and it has pain, but whose doesn’t? I have a husband who works so hard for this family – he works to keep us fed, keep us healthy, and keep me home to raise our family. He would do anything in the world to make me happy, and his love for me is larger than life. And yes Hayden died, but I have THREE living boys who make my heart burst – and make my head ache, if I’m being truly honest – but I wouldn’t change it for anything. I get to spend each day with these beautiful gifts – and I realize that’s exactly what they are. Thanks to Hayden and the lessons he taught me while he was here, I fully engulf myself in them – and they make me laugh and love harder (and maybe drink a little more wine) than I ever knew possible. Beyond my sweet little family, I am surrounded with a plethora of stellar people – both from my past and my present. Again, I know that all of them are gifts – and I truly take none of my blessings for granted.

I am approaching my six-year mark since the last time I held him in my arms. I’d be kidding myself if I didn’t acknowledge that it will most likely be just as painful as every other year reliving that awful day – but there is such a feeling of peace that comes with my pain this year. The peace of knowing that although great tragedy has touched my life, so have great blessings.

I feel confident at this point in my journey that I have overcome the stages marked Denial and Bargaining. I know that I will no doubt still have days where I will experience Anger and Depression, especially around his birthday and the sadness of not having him here to celebrate, as well as his day of passing which creates the deepest feelings of anger and depression of all. The reality is my child died. A part of me died. That’s real. But knowing those feelings will pass and knowing acceptance in my heart has not only begun, but is burning stronger every day leaves me with peace – even amidst my pain – and gives me hope that with each passing day the peace and acceptance will become stronger and I will continue to live a life full of gratitude right alongside my grief.

Healing of the Heart - summer 2018

When Sabrina and I hosted the first ever ‘Healing of the Heart’ retreat in the fall of 2015, I never in one million years would have thought it would do what it has for the now 100 bereaved heart angel mamas that have attended over the past four retreats.


We went into this blindly, desperate to feel a connection with others whose hearts were shattered – but who knew this wasn’t the way the rest of our lives should be. Life would have to go on, and we’d need to find our tribe of people to make it through, and not just survive – but LIVE.

 

Learn all over how to love hard, laugh out loud, and find purpose in our grief.   

I can tell you that other than Hayden’s life, this journey I am on with campaigning for a retreat house of our own has been the biggest roller coaster of my existence. Never have I felt so many ups and downs – two steps forward and five steps back - huge highs, and even bigger lows – and the thought of quitting crosses my mind  SEVERAL times a week. I’ve heard NO more times with this than I have with everything else in my life - combined.

But God. He Keeps whispering YES. He keeps giving me the strength to continue. The strength to put myself out there for what could possibly be another BIG FAT NO – but one that could be THE ONE – the YES we need to make it all come to life.

The 2018 summer Healing of the Heart retreat He sent 25 women to touch my soul – to encourage my heart – to keep me fighting for this crazy outlandish dream of having a house where we can support broken hearts year round – and build them up, helping them on their healing journey.

As I sit in a coffee shop, tears already streaming, I am remembering the days I spent with these BRAVE women who once again poured their hearts out – shared and bared it all – about the most precious parts of their life. Once again the stories they shared ripped at my heart – made me feel my loss and the pain of those first few unbearable years all over again. The shock – the physical pain – the absence in their hearts. It was all so real – and so raw. But they all came from all over the country because they wanted to begin to HEAL. They wanted to find a way to live their best life – again.

Four years in and I STILL cannot find a way to truly explain or describe this retreat. Whenever I come home, my friends and family always lovingly ask – ‘So, how was the retreat?’ And I often pause…hmmm…How do I put it into words. And this year before I got to respond with ‘Oh it was great’, one of my bests spoke first and simply asked… ‘Mission Accomplished?’

Yes. YES !!!! Yes it was. Beyond. We once again provided these beautiful women with a safe sacred space to speak freely – to cry – laugh – dance – scream … and ultimately begin to heal. These women were like magnets – their connections so strong within just 4 days together. Simply because they understand each others’ hearts. A sisterhood was once again formed and so yes, MISSION definitely ACCOMPLISHED!!

I always start and end each of our retreats thanking these courageous women for trusting in us – for taking the leap to attend a retreat where they most likely know no one – but know how badly their heart needs it. Hayden and his legacy has paved the way and the confidence, but these women – these 100 women who are all a part of the ‘club’ that no one wants to belong to, but because these are their cards, are all so thankful to have one another – they are truly the inspiration and driving force behind this house. This fall we will welcome yet another 25 bereaved heart mamas – and we are still just scratching the surface in heart loss, let alone all other losses. I live for the day we have a home of our own where we can provide this space to women, men, siblings, families – of all losses and from all parts of the world – because every bereaved parent ought to have a ‘mission accomplished’ weekend – and every broken heart deserves to learn how to live their best life – again.

meet timothy

Our 6th annual Pennsylvania Golf Outing is about 6 weeks away - Friday July 27th!
We are honoring heart warrior Timothy Wooldridge and family from Bellevue, Pennsylvania.
Please visit our website to register!
Or email rebecca.perrotto@haydensheart.org to sponsor or support this event!

Meet Timothy....
Timothy Wooldridge was diagnosed prenatally with a severe congenital heart defect called Hypoplastic Left Heart Syndrome. It was an incredibly scary time for our family. I was put on bed rest at 30 weeks because of my risks for pre-term labor and his heart defect made it more important than ever for him to be born full term. At 37 weeks Timmy was born and was immediately transferred to the CICU at Children’s Hospital of Pittsburgh. It would be three days before I could be reunited with him and then he had his first open heart surgery, the Norwood procedure, at only four days old.

The first three months of his life were spent between the step down cardiac unit and the CICU and he had a tracheostomy and g-tube and nissen surgery in that time. At three months old Timmy had his second open heart surgery, the Glenn procedure. The hope was that his heart function would improve after this surgery and that he would be able to come home for the first time. This was not the case, however, and he became sicker and sicker. Our family had prepared for the prospect of spending three to four months in the hospital, but after being maxed out on three different heart medications, being put on a fourth IV heart medication, and maxed out on diuretics we knew that a heart transplant was his only way home.

This time in our lives was incredibly difficult. Timothy is the youngest of three and his older siblings had to go through many days and nights without one or both of their parents. For a time there was no end in sight, which is why the day we received the call that a heart was being offered was the most surreal day of my life. Receiving the gift of life was only the start of the next chapter in our family. There were still repairs to our home and supplies we needed to purchase to make it safe for Timmy to come home for the very first time when he was nine months old. Keeping Timmy healthy and out of the hospital as much as we can is a daunting task and requires constant vigilance and keeping supplies that insurance does not cover in stock at home and keeping up with the repairs that come with living in an old house.

how many kids do you have?

The most common small talk question I am asked as a mother is...
‘How many children do you have?’

Easy enough to answer, right? Not in my world...

This question often haunts the bereaved mother in more ways than one can imagine.

I remember the first time someone asked me that after Hayden died. I was photographing a family for their Christmas card and in walking from one spot to the next, the mother asked me how many kids I have. I stumbled – and in a blip, my thoughts ping-ponged – I instinctively wanted to answer ‘two’ – but figured the next question would be ‘how old are they’ and my mind quickly went to the reaction the mother would give when I told her I had two, and that one of them had died just a few months ago. I knew if I said that, the entire mood of the session would change and I would spend the next 30 minutes telling her it was ok, or watching her fight back tears, or have it go in a completely different direction with her saying inappropriate gestures in attempts to make me feel better - ’Well at least you have other children’, or ‘he’s in a better place’ etc. But either way, I knew the happy easy feeling of the afternoon would take a drastic turn if I were honest. And so I said ‘I have one child’. She then asked how old, and I sheepishly answered ‘he’s 3’.

I finished the session and got in my car and ugly cried the entire way home. The guilt and pain I felt in my heart for not acknowledging Hayden to that woman was awful – and I promised myself and him at that very moment that I would never answer that way again. I would answer with two – and if the conversation led to more, I would take it in stride. That I wouldn’t worry or feel guilty about how it might make the other person feel, that my feelings needed to be a priority right now and I knew for sure that I never wanted to feel this guilt again.

Since that day, I can’t begin to count how many times someone has and still does ask me that question. Especially when I was pregnant with my two rainbows – everyone wanted to know if this was my first. And when answering with my third or fourth, again I knew the next question would lead to telling this complete stranger the taboo that is – my second son died. And then the silence, sometimes tears, and sometimes me comforting them. It’s a strange thing really. It creates an instant pity party – one that I don’t want to have, but one that is necessary – most people feel immediate heartache and pain for my loss and feel the need to express it – which I must say I completely appreciate the empathy, as the alternative is much worse. But, there are times that I just want to wear a sign that says ‘My son died. Yes, it’s unfathomable. Please don’t say anything stupid to try and make me feel better’.

It is quite possibly the most difficult question bereaved mothers are asked – and not because we aren’t sure how many children we have – we are very well aware. It’s because of what unknown questions will follow – and what reaction the person asking will give us. I’ve so often thought about lying – when the follow up question comes of ‘how old are they?’ I’ve thought how nice it would be to live in fantasy with this stranger – to tell them I have a 9 year old, 6 year old, 4 and 2 year old. And just leave it at that. No mention of anyone dying. No sadness. But each time I build myself up to do that, I pull back. So much of me feels like that’s a disservice to him, too.

Fast forward 6 years - this past weekend I was again asked how many children I have. I answered a confident 4 – which often leads to mouths dropping or ‘how do you do it’ responses. I often find it necessary to tell them that I only have 3 living – to insinuate that my life isn’t as chaotic as it must sound when I say 4. But then there it leaves us again with talking about my son that died. And again there is often awkward silence, as most people cannot fathom or imagine what that must be like. But now that I am a veteran at answering this question and handling the array of responses, the difficulty has lessened, and honestly- it gives me a reason to talk about him – to say his name – and to tell a piece of his story – if even the worst part of it.

As Mother’s Day approaches, I gather that I will once again find myself floating between deep sadness and incredible joy all day long. I carried four babies. I birthed four babies. One of them died and that is a cruel reality. But I have FOUR children and that is a blessing worth acknowledging and celebrating every single day. Hayden was only gifted to us for a short time, but he lives on in us and with us every single day. He will always be my son, and I his very proud mother.