4th annual 5K birthday bash!

Hayden's Heart 4th Annual 5k Birthday Bash! 

Date: Saturday March 19, 2016

Place: Riverside County Park South

Time: Registration opens at 9am

           5K Run/Walk and Fun run/toddler trot for kids all starts at 11am

Cost: $35 

We will spend the morning together celebrating Hayden's 4th heavenly birthday with lots of food, fun family and kid activities and a birthday song, bubbles and cupcakes donated by SugarBabe to end the celebration. 

This year we are honoring Matthew Mursch and family. We met this sweet family while inpatient with Hayden back in 2012. Matthew also has Hypoplastic Left Heart Syndrome and not too long ago he had his third open heart surgery, the Fontan. To learn more about Matthew, please visit his Facebook support page and read our blog entry. 

To participate in this years 5K, please register in advance here. 

Information on registering a team or being a virtual runner is also found on the link above. 

For information on sponsoring or volunteering at this event, please email rob.dorsett@haydensheart.org

meet matthew!!

This is our son Matthew Mursch Jr. He is a 4 year old heart warrior whose spirit and personality is so contagious! He was diagnosed with a severe congenital heart defect called Hypoplastic Left Heart Syndrome at our 18 week anatomy scan. My husband and I went in to the scan so excited about finding out the gender of our baby. Never did it occur to us that we would find out our baby would be born with half a heart and our lives would be changed forever. From that day on we wondered why did this happen to our baby? Was it something I did? Was this scan read wrong? Why.. Why..

We followed up at Children's Hospital of Philadelphia where we fell in love with everyone we met. We weren't just another couple with a high risk pregnancy; we were their patient. We found out our son would need 3 heart surgeries and a possibility of others. I gave birth to Matthew on November 29th, 2011 in the SDU at CHOP.

I immediately fell in love with my 8lb 14oz baby boy! They brought him to my bedside so we could see him before he was rushed to the CICU to be stabilized. That's when it actually hit me that our son would be battling for his life. He had his first open heart at 7 days old, his second surgery at 3 months old, and his third surgery at 2 1/2 years old.

There is still the question about what may happen next in our mind. We don't know those answers. All children with CHDs are different. Could possibly need another surgery or transplant. We won't know. We are so blessed that he is here with us and doing well. We can't ask for anything else!

We are so honored to be a part of Hayden's Heart 5K. Hayden has a special place in my heart and I know he watches over Matty. Ady was the first heart mom I met while we were at CHOP. Our sons pods in the CICU were next store to each other. We are so blessed to have become friends with her and her family!SaveSave

Relationships in the heartland

This is another blog I wrote to support grieving families through Sisters By Heart. Thank you SBH for providing me with this platform to support other grieving families, and thank you Jackie for your friendship.

Relationships in the Heartland

Motherhood can be the greatest gift- and the greatest challenge all in one day.  Especially for a heart mom. Family and friends often cannot relate to what we witness our children go through on a daily basis. Whether if be a huge ordeal like open heart surgery, or daily tasks such as shots of lovenox, its all foreign to anyone outside of our community. Thank goodness for our fellow heart moms. I know that most of us heart moms can agree that if not for each other, the world can often feel like a very lonely place. Having those people- most of whom we’ve never met in person- be there to understand what we mean when we say terms like effusion, shunt and lipids- can really ease the situation and remind us that even though we sometimes feel it, we aren’t alone. Some of these heart moms quickly become our best friends- the people we turn to first when anything happens to not only ourheart children- but even other aspects of our lives as well. Relationships so strong you know you’ll be friends – practically family- forever, and so will our children.  Unless one of them dies- then what? How do we move on in our relationship- are we still friends? The relationships we at one point felt most comfortable in quickly become the ones that feel most foreign. As a grieving mother, we again feel complete isolation. And I can assume that the surviving mother feels confused as to what to do, say, how to act- the entire relationship just becomes incredibly confusing and complicated.

The day Hayden died my entire world completely changed. Every single aspect of it. The way I lived my life, the relationships I had, the feelings I had towards my faith, the way I slept-ate-breathed. EVERY single part of my life changed. For the first few days, weeks and even months after he died I didn’t know who to talk to- who to be friends with- if I would even have friends again at all. No one understood me or could relate to me- except fellow angel moms and that was a group I was just not ready to accept that I was a part of. My ‘normal’ friends seemed so far from my reality- they didn’t have a sick child- and that was at times tough enough- and now my sick child is gone which made it even harder- at first.  I soon realized though that the toughest relationships to uphold moving forward would unfortunately be that within my heart community- those whose heart warriors were still fighting.

I remember Hayden’s funeral. I held it together very well I think thanks to an old friend, Xanax. I held onto Hayden’s lovey the entire time and although I shed a tear here and there, I for the most part was able to almost separate myself and pretend it wasn’t my child’s funeral I was at. There were only two times I outwardly sobbed- so hard and so loud I could actually hear myself echoing through the funeral parlor. The first was when my aunt from Canada came through- her first daughter also had HLHS 20 years ago and died at two days old. I cried mostly because I knew she too had felt the unbearable-indescribable pain that I was now facing and that hurt my heart to know that pain was in someone else I love. The second time I cried out was when my closest heart mama came through. I cried because she was, at one point, just like me- she has a son just like mine. We were friends because of our children.  I remember sobbing in her arms- thinking how strong of her to be here- knowing just a few weeks ago we had talked about another baby who had died in our community and we were both scared to death at the thought of that ever happening to us. And I know coming to Hayden’s funeral scared her beyond words that this someday could be her.  Having her there meant the world- but I was pretty sure with Hayden dying our friendship would change and we wouldn’t have anything to relate to anymore.  Would she be scared to be my friend- as if Hayden’s death were possibly contagious? I wasn’t sure any of my heart moms and I would have any reason to even communicate at all after this.

The first year was the toughest for me. I hate to admit it, but often times I was jealous of my fellow heart moms who still had their warriors. I couldn’t for the life of me figure out why God didn’t give us our miracle- but then gave it to so many other families.  We too prayed with thousands for Hayden’s miracle just like they all did. I watched on Facebook as several of Hayden’s buddies had their Fontan and it would knock my feet out from under me for at least a week. It hurt so bad that he wasn’t here doing what they all were- and he never would. I’d often think I must be crazy being jealous of a friend and her child having open-heart surgery. But of course if having heart surgery meant Hayden were still here, I’d take it.

After Hayden died there was always what felt like that ‘elephant in the room’ whenever I was around or spoke to other heart moms and families. The internal pain we were both feeling for not only my loss, but also the worry that they may too someday feel this pain was unspoken, but so intense.  The relationships us heart moms have are so raw, so intimate- so unique. There is nothing else like it in the world. But getting over that initial hurdle after one of our children dies and still remain friends takes a lot of work, a lot of patience, and a lot of openness.

I am so thankful that heart mom from Hayden’s funeral kept pushing on in our relationship. She wasn’t afraid of me. She stayed around- she set up a meal train after he died, she visited, called, emailed, text. She stayed in the for-front and to this day I know it is because of her openness and persistance that allowed us to remain great friends- even with that elephant. And now almost three years later our friendship is even stronger. Even though Hayden isn’t here, we still have things in common.  I love being able to share in her sons improvements and I know that I will always be involved in her families life, and her in mine.  

So yes- upholding a friendship with my fellow heart mamas has been a struggle for sure- and three years later I still have a deep internal pain that goes through my body thinking ‘oh how I wish Hayden were the one going to follow ups or caths at CHOP or CHP like our heart warrior friends do’- and I know those thoughts will always be there. Watching them experience their 3rd and 4th birthdays, eventually start kindergarten, graduate middle school- god willing all of this happens for these kids and I know to watch them reach these incredible milestones will bring me such joy… and also pain- but to push them out is just not an option. They are a piece of Hayden and that life we had together and that alone is reason enough to push through the pain and remain a part of these families’ lives.  

So I guess it all comes down to what you can handle, when you can handle it. If I can give any advice or insight into this newly uncomfortable relationship, I would tell the grieving mama to step back if you need to, un-follow, hide-whatever that means to you.  And to the surviving heart mama- don’t stop being their friend. They need you now more than ever. If they don’t answer your phone call, don’t take it personal- although it very well may be. Don’t push them away. If they don’t answer your phone call, text them- email them. Don’t stop supporting them. They may not be able to handle the friendship just yet, but let that be up to them. Don’t just assume they don’t want or need you. But be prepared that they may ask you for space, and if she does, give it to her- but don’t forget about her or her child. Say her child’s name. Remember her angel and talk about them- honor and remember their birthday, angelversary, reach out on holidays- those dates are all so unbearably tough. Your grieving friend may never come around- everyone is different. But I know for me, all it took was to know that even though my heart warrior died, I was still loved and accepted in the heartland.

Happy 3 years Hayden's Heart!!

It is said that it can take 3-5 years to know if a business is going to be a long-term success.
Hayden's Heart is celebrating THREE YEARS this month and I am proud and excited to say that we are one of the lucky ones- we are a success- we continue to grow each month- and we have no plans on slowing down.

Three years ago I sat across from Rob on my couch and I can remember it so vividly. Telling him I wanted to start some foundation for Hayden- I needed something to do with my time that would be more beneficial than walking around my house crying all day. I remember asking him what we should call it- and him immediately responding 'Hayden's Heart'. It was so simple, so obvious- yet now that name is a household fixture for so many people around the world. It's overwhelming to try and process how far we've come.

I remember our first event- slightly thrown together in less than two months (very typical of most of the first run-through of our events- even the retreat we put on this past month). Hayden never made it to my hometown in Williamsport, PA so it just felt right to host our first official event there. With the help of a friend who managed a well-known restaurant, and the help of my sister and best friends, we pulled off a successful auction to honor Weston Keeton and his special family. I knew at the close of that event we were meant to do this in honor of Hayden- this was my new calling in life. Honoring Hayden and helping as many heart families as we could along the way.

Fast forward a few months and taken from an idea from our neighbor, the three of us hosted our first annual 5K Birthday Bash. Looking at how far we have come in the second and third years for that event is honestly so breathtakingly amazing. I can't help but tear up when I see the progression we have made the past few years. And this coming March we will be celebrating Hayden's fourth birthday with our 4th Annual 5K. It still doesn't seem real that he would soon be 4.

We also host two golf tournaments annually and are excited to add two new events to our calendar this coming year! Pennsylvania will be hosting a formal silent auction with a Historical Baseball theme in the spring, and in just under a year we will host our first inaugural Heart of Gold Gala! This event will honor a pediatric cardiologist and will also be a formal silent auction. Stay tuned to our website and Facebook page for more information on these exciting events!

We started out with four board members- two of which were Rob and I, and the other two we asked to be on the board just to sign the federal documents. We are now ELEVEN board members strong and I am beyond thrilled and honored to have each one of them a part of our team. They have all been inspired by Hayden and by what we are doing in his memory and honor and I know I can speak for both Rob and myself when I say we know how blessed we are. Along with our dedicated board, we also have several committees working on events and other parts of the foundation. Each member of our team, both the board and the members of our committees play a large role in our success and I cannot stress enough how grateful we are to have each and every one of them! Big things are happening for Hayden's Heart, which means big things are happening for our heart community!!

In the past three years, we have significantly helped 18 families financially through our events, as well as several other families throughout the year. We've sent almost 100 Grieving Hearts care packages- a number I am not happy with or proud of- being that means all of those families are grieving, just like us- but I am honored to have our foundation send them some comfort and love in their tragic time. We have and continue to extend our hospital care packages to other cardiac floors on the east coast and are starting to prepare our holiday packages going to four different pediatric hospitals in just over a month!

And...something BIG is coming very SOON for Hayden's Heart- I can't share it just yet- but it won't be long and I promise you it is well worth the wait. Its been in the works for over 2 years- and finally everything is falling into place just perfectly. I truly cannot wait to share it with all of his supporters- with all of you. So hang tight...

This post isn't written to toot my own horn- it is to toot all of yours. Hayden's Heart is run by my family and our board and committees- but truth be told, we would be nothing without all of your support. Without you, we wouldn't have a reason to host events, wouldn't have the funds to send care packages or financial relief. I share this success with all of you, because it is YOU who have helped us get to where we are.

I humbly and graciously thank you all for making our little dream and vision a BIG success. And the best part is, we are just getting started!!



(we recently updated several sections of our website- please take a minute and read all about our new board members, as well as other sections on our website)

Healing of the Heart...indescribable

Powerful

Emotional 

Symbolic
Amazing
Comforting
Friendship
Sisterhood
Healing
Rejuvenating
Enlightening
Uniting
Accepting
Strengthening
Opening
Home
Uplifting
Unforgettable
Empowering
LIFE- CHANGING

These words were given to me by the 24 women who attended our first ever 'Healing of the Heart' Retreat. Having just a few months to plan it and pull it all off, I'd say those words speak volumes of success.

Friday started off shaky with a possible hurricane on the way- thankfully all the flights were still on time and everyone arrived safe and sound. But boy was it rainy, cold and messy.
Our mothers were greeted with shoulder massages donated by a heart warrior, Sam, and her friend Beth. The ladies were already feeling the love and starting to relax and settle into what would turn out to be one of the most powerful weekends of their lives.
Once we got everyone checked in, they had some time to dig through their overflowing welcome bags. Words of excitement and awe filled the rooms. Every item handpicked for these mothers- all in attempts to spoil and shower them with love and support. (MANY thanks to anyone who sent us items, solicited items, donated funds, and created perfect keepsakes for our mothers!)

               

We then took some time to introduce ourselves and our angels. Starting with an emotional slideshow of our angels and leading into each mother lighting a candle as they prepared themselves for a weekend that would revolve around their angel, their pain, and hopefully lead to the start of healing their hearts.

Following dinner, we spent the next 7 hours in a room together- sharing our angels birth, life, and then what led to each of their tragic deaths. If any of you have ever heard me tell my story- you know how emotionally draining that alone can be. Now multiply that times 24 and you can only try to begin to imagine what we all experienced that night. 

I woke up the next morning feeling depressed, couldn't stop crying and feeling like I had failed. If I felt this bad, my guess was others did too and I felt nothing near a healing experience- but quite the opposite. I felt like I was about to slip back into a hole of my own depression- and everyone else's there too. 

When planning this retreat I figured we would need some ways to freshly start our days and had a friend coming from home to provide light stretching and calming techniques through yoga. 

Elie walked into the room that morning and was brought to tears by the overwhelming sense of our angels' presence in that space.  She immediately somehow knew how best to lead our group that morning and over the course of an hour, I felt some of the pain lift and the tears stop. After our time together, I was more prepared to face day two in hopes that the feelings of healing would continue through the rest that was planned. 

The rest of the afternoon we spent working on our healing- having group discussions, group art therapy, and were given gifts of love to remind us of how supported we are through it all. By the time dinner rolled around, you could feel the unity and connection we all had to one another. So deeply connected...

The evening lent itself to tough topics again, but ended on a much lighter note than the first and the friendships and bonds grew deeper with every passing hour. I personally haven't laughed or cried so hard in one day ever in my life. 

I woke up Sunday with a clearer head and as I went to get ready for our morning yoga with Melody, I noticed the sun peeking out through the trees. A smile and tear came together as I really couldn't believe how perfectly the weather that weekend mirrored our emotional weekend together. Friday started off horribly- worried mothers might not even make it to us. And now here we are less than 48 hours later- and just like the change in weather, so too were our moods. Saturday had been a tough start, but the healing did begin. I looked forward to our last day together hoping that things could only get better from here. 

The weather was mild enough to have yoga outdoors and just like Saturday, our instructor sensed our placements within ourselves and put on the perfect start to our day. She focused on our bond and togetherness- how to build off each others strengths in times of need and how to appreciate the relationships surrounding us. And as tears streamed down our faces, we looked around our circle at one another knowing our lives have truly been altered being in each others company. I felt so blessed in that moment and I have to believe others felt it too...  

               

Once yoga was over, we quickly transitioned to our last group activity- one I had been looking forward to all weekend. Two generous and talented women came to join us for a group art class- painting our retreat logo! So many of the moms were excited about this- what a relaxed, fun and memorable way to end this emotionally tense (at times) weekend! And what a perfect keepsake to hang in our homes always in view and a reminder of this very indescribable time together!   

                   

Now comes the hardest part to put into words. Our closing. We tried to to release butterflies but the weather just wasn't going to cooperate with us for that so we did a handful of balloons and everyone wrote messages to their angels. I thanked Hayden for leading me to Amelia's blog about her retreat for her son, Landon.  I know none of that was by chance- but because he knew if he planted that seed in me I would find a way to make this happen- and he was right. I am always and forever thankful that I was chosen to be Hayden's mama and that he knows I will carry out any mission he brings my way in his name

            

We released them together and to me, this was the toughest part of the entire weekend. I knew what this symbolized. I knew this meant it was over. The weekend that we had spent a few intense months planning was coming to an end. I wasn't prepared to make the friendships and connections I did. I was hoping to just be in a space with other moms just like me and didn't really think about what would happen when we had to say goodbye. After we released them, we all kind of stood there. Like now what? None of us were ready or prepared to say goodbye. So, we all kinda just stood there. Watching our balloons, crying, taking selfies, laughing, hugging.

                        

         

It took awhile till the cars started to fill and drive back down that long dirt road. And as the last cars were leaving, I made one last stop in the house just to do one final look through. And as I did that, the tears came back full force. I was so sad to have my new friends leave, but even more than that I was sad my weekend with Hayden was over. As a mother to three other children, rarely do I have time to be with Hayden- really be with him. To think about our life together like I did this weekend. To allow myself to cry-laugh- and cry again anytime I want. Not having to wait until my kids are asleep, or when I'm driving home from a photo shoot- but anytime I wanted. Like so many other moms there that weekend, we mask our emotions and feelings. Some because they have other kids to keep it together for, some because we feel judgements from the outside world that we should be 'OK' by now, and some out of just sheer uncomfortableness of grieving so outwardly in front of the world. Whatever the reason, I am honored and blessed to have been able to give these mothers a weekend where they could come to and grieve their child- their baby, their toddler, their 'big kid', their teenager. All weekend long mothers kept thanking me, telling me how amazing I am- and I kept shaking off thinking- you have no idea how special it is to be able to execute this for all of you- how amazing all of these women are to have trusted in us, some flying from all parts of the country, to spend a weekend with people they had never even met. SO, I say thank YOU to those 23 moms who made the trip- trusted in us- and came together to heal.
This experience has for sure changed my life.  No words or blog will ever do justice in describing what I and the other mothers felt on this weekend retreat. No thanks will ever be enough to so many of you that helped make it happen. This blog was my attempt to show a little insight into our weekend together and to deeply thank all who made it possible. Because it definitely wouldn't have happened without a ton of incredible people whom I am confident Hayden hand-picked to be on this journey with us. Thank you to all of our volunteers for the weekend- for setting up, for working with our moms in either massages, yoga or art. For donating items, sponsoring scholarships, making food, sponsoring crafts, securing items for our bags, and so much more!

Thank you Amelia for creating something so worthy of mimicking.

Thank you Sabrina for believing in me, keeping me sane, and for helping to make this happen.

And of course...for you- and because of you- always thankful for you my sweet, sweet Hayden...

Hope after Loss

A few months ago I was approached by the President of Sisters by Heart, a non profit organization that offers hope and support to HLHS families, to work together towards supporting grieving families within the Sisters by Heart family. I was honored to be asked and immediately started working with them on creating a page on their website dedicated to families of the bereaved. Soon after, 'Hope After Loss' was established. 

I, along with a fellow angel mom Teri, will post blogs periodically that relate to the grieving world in hopes to provide some hope and support to those families. I have decided to also publish those blogs here in the event that they may serve as support to other grieving families- not just those connected with SBH. I also thought it would be a great opportunity with each post to share some photos of Hayden I haven't ever shared before. 

~Hope After Loss~

In November of 2011, my unborn son was diagnosed with HLHS. Soon after, I received a care package from Sisters by Heart and it was and still is something I will always remember. I remember the hope that package gave me- in a time I felt so alone- so hopeless and helpless. I remember reading about some of the founders heart warriors and found hope in knowing that even though these children had open heart surgeries and spent months in the hospital, they were making it and thriving and that gave me so much hope that my child would be ok through this too.

But….what happens when your HLHS’er dies??

Because as unthinkable as it may be, it happens- and it happened to me.

That particular hope is gone. A large piece (if not all) of your life and heart is gone with that child and you are once again left with feeling hopeless that life will ever go on for you and your heartbroken family.

Sisters by Heart wants to continue to provide those grieving families with HOPE and support- not the same hope as before- how could it be- but with a new sense of hope as you and your family try to navigate through this unbearable new journey and life you have been unwillingly thrown into.

My son has been gone since 2012- so please know it took me some time to get where I am- and please take your time- but there is hope that down the road you will survive an entire day without crying, that you will have happy days- not just happy moments. There is hope that you will smile again- really truly smile again. There will come a time when you will see some child that should be the same age as your child and not want to turn the other way sobbing in tears- but instead gaze at them with a half smile on your face imagining that is instead your child running through those sprinklers on a very hot summer day. And then the next time you see a child the same age you may need to walk away in tears- and that’s perfectly ok.  But there is hope that someday you will take a deep breath without your chest hurting as you try to inhale. You will drive pass the funeral home without breaking out in tears. You will find an old syringe under the fridge and smile. You will somehow survive this. It will be the hardest form of survival on the planet - and we are all a work in progress- but there is hope that you will somehow survive.

Because though you’ve been dealt life’s greatest tragedy that exists, your warrior left behind with you the greatest gift. Because of what you and your child went through you will never again take one day for granted. You will appreciate every single moment of your own, your other children’s’ or loved ones lives. You know what it is like to go through and experience the most unimaginable pain- and so you love and live harder than anyone you know.  

And along with this gift left for you, there is also hope that life will become bearable again someday. It will never be the same- it may ever feel full or make sense- and of course will never be what you had planned it out to be- but there is hope that you will one day have more good days than bad- more smiles than tears.

Please know while you try to figure out a way to get to this point, and even once you have reached it, we are here to support one another and are here to provide love and care for your broken heart.

i'm ok...

There is nothing worse in this world than loosing your child. This I am sure of. Because if there were,  anything more painful would for sure kill you. There is also nothing I want more in this world than to have my son back. To have all four of my boys together in my arms, someday playing together, fighting together, growing up together. The pain of that never happening is practically unbearable.

BUT- I'm ok....
I'm ok because if I have to be angel mama, which I guess is what God had planned for my life- than I will say, I am the luckiest angel mama there is.
I'm ok because I had an older child when Hayden died- who quickly become my reason for living.
I'm ok because my husband single handedly planned the funeral and his final resting place, allowing me to play a part when I could- but making sure it all came together.
I'm ok because two months after Hayden died, he gave me the idea to start his legacy, Hayden's Heart. Which quickly became (and still is) my link to Hayden and my place to bury myself when anger and pain take over my body from loosing him.
I'm ok because after starting Hayden's Heart, the thousands of people who supported us while Hayden was here are now supporting us after he is gone and are the reason his legacy not only continues, but has become the amazing success it is today.
I'm ok because after 9 months of trying for him, and then 9 months of pregnancy- I finally got my rainbow- and what a colorful boy he is. I always say Hayden hand picked him just for me- gave me exactly what I needed. He gave Hudson red hair and a contagious smile- just like him. He made him a handful to keep me busy and never have a dull moment so that I couldn't slip back into that depression. And he made him the sweetest baby in the world- sweet enough to make any sad moment instantly ok.
I'm ok because I am blessed to stay home with our babies. It is a gift I have always wanted after having Jackson- and thanks to my husband working several side jobs, and all of my photography clients, I am, for now, able to be home while my babies are still babies.
I'm ok because Hayden, along with God, decided to surprise us with another perfect rainbow. Another perfect baby boy who has already proven his purpose- to also bring joy back into this family.
I'm ok because of all of the support I personally get from all of you. This past week the amount of people who emailed, called, messaged, text- all to let me know they will never forget Hayden and that they are thinking of us was out of this world. Truly incredible.
I'm ok...because other than my son dying- I consider myself lucky and blessed.
I have a husband that has as much of a passion for Hayden's Heart as I do. Who supports his family, loves his children, and tries every day to be a better husband and father than he was the day before.
I have four of God's greatest creations as my children. They make me the happiest, proudest, and busiest mother on the planet. And thanks to his legacy and to all of you, Hayden will never be forgotten. His life, fight, smile, hair, sweet face- will never be forgotten. And in his name, thousands of families will be helped, their lives will be changed, and I am the lucky mama who gets to be behind it all.
And so, I'm ok...

i remember....

I remember....
I remember the nurses wheeling you into your CCU room after you recovered from your g-tube placement and you looking at me and giving me that glorious smile for the last time...
I remember being on the phone with your home cardiologist when your SATs began to drop.
I remember hanging up on her because they kept dropping.
I remember the room filling up so fast that daddy ended up on the other side of the room as I held your hand and watched as you screamed while they tried to get your oxygen levels back up.
I remember collapsing in your daddy's arms as they wheeled you over to the CICU for an emergency chest tube.
I remember your neurologist grabbing my arm telling me it was just another bump in the road.
I remember the last time I held you before it all went so terribly wrong. The nurses begged the phlebotomist to let me hold you- saying mom can calm him down, let her hold him.
I remember holding you-rocking you back and forth- not knowing at all what was about to happen to you-because if I did, I would have never ever ever let you go.
I remember hearing you make noises in the room and asking an attending to come check on you.
I remember the code. I hate that monotoned woman's voice.
I remember dropping to the ground sobbing-screaming 'IT'S HAYDEN!'
I remember holding your hand as three sweating nurses rotated their compressions on your tiny, white lifeless body.
I remember kissing your head and watching them wheel you down the hallway having no idea what was happening and if you were going to die. I had never been so scared in my entire life.
I remember the surgeon come tell us she fixed your heart. Now we worry about your brain.
I remember feeling so hopeful. SO So hopeful.
I remember while waiting to go see you,  browsing Facebook seeing everyone change their profile picture to your picture.
I remember feeling SO MUCH LOVE and support at that moment. I just knew you'd make it through.

I remember walking into that pod and seeing a baby who looked nothing like my baby.
I remember waiting all day Wednesday for you to show some brain activity.
I remember being moved into a private and not seeing the signs that you were dying.
I remember an attending who became a friend telling us she had never seen a Glen-baby recover from  seventy minutes of compressions.
I remember walking over to you, as to prove her wrong, singing to you, talking, holding your hand, talking about Jackson- then looking back to Rob hoping he saw some brain activity on the EEG.
I remember him shaking his head no, and thinking for the first time ever that you were probably really going to die. That my sweet baby was going to die.

I remember visiting our heart friends in the CCU and her asking me if I believed your soul was still here- and answering her 'no'.
I remember meeting in the conference room with your neurologist- the same one who 36 hours prior had told me this was just another bump in the road- and him telling us there was no brain activity and there never would be.
I remember walking back into your room and laying on your bed with you. Drowning out everything around us. Listening to our music and just touching your hand and head- going far far away from that hospital room and picturing us somewhere else.
I remember my best friends coming in and helping me make some irreplaceable keepsakes and at one point realizing my chest was tingling in pain- I needed to pump milk for my child who was about to die.
I remember our family getting there and it all becoming so real again.
I remember the doctors and nurses moving you- and all your tubing and ECMO canullas, your wires, all of it- just so I could hold you alive one last time. And so you could take your final breath in my arms.
I remember thinking it should never be that difficult to hold your child.
I remember our family and best friends surrounding us as the chaplain who also baptized you just five months before was now helping us say our final goodbyes and sending your soul off to be with Jesus in Heaven.
I remember them pulling the plug. Your lips immediately turning blue. Tears falling all over my face. Thinking how in the hell is this happening right now?????
I remember trying to find the beauty in being the one person who watched you come into this world and now was watching you leave it. Like the mother tries to in Steel Magnolias. But I couldn't find anything beautiful about you dying.
I remember locking eyes with Rob as the doctor removed your breathing tube.
I remember thinking how tired and aged he looked- so full of sadness and defeat.
I remember thinking in that moment that when we started this life together this was the last thing we ever thought we would have to experience together.
I remember holding you for 6 more hours as several doctors, nurses- what felt like everyone on that floor and the CCU had made their way to say goodbye to you-and to us.
I remember the awkwardness of saying our final goodbyes to your care takers who most had become like family to us.
I remember walking out of that room and turning back one last time as your nurse held on to you with tears in her eyes and a half smile on her face trying to pretend everything was going to be alright.
I remember collapsing outside of your room sobbing- being picked up by your daddy and nurses.
I remember the pain in my chest and body as I, for the first time, walked out of that hospital and rode all the way back to our home without you in the back seat next to me.
I remember getting home and soon after getting a text from our favorite nurse who had just landed from vacation asking 'How's my little buddy'.
I remember her screams and cries on the other end of the phone- just as confused as we were as to what happened.

I remember the morning of your funeral. Waking up, putting on the same black dress I wore to my grandmothers funeral a few years back, thinking I can't possibly be getting dressed for my sons funeral right now.
I remember sobbing so loud twice in that funeral parlor that I could actually hear myself echoing.
I remember the first few weeks and months feeling my body go in and out of numbness, the pain was just too great for my body to bare.
I remember wondering if the ache and deep pain in my chest would ever go away.

I remember through all of this- the three days leading up to your death, the week planning your funeral, the first few weeks and months after you died, and even now...I remember the love and support we were and are given by people near and far- people all over this world.

I remember....and I will never forget.

another successful blood drive!!

What a moving event!!
Our blood drives continue to be hugely successful year after year. I am so amazed at how every year the Red Cross bumps up our goal, and every year we surpass it!!
This year our goal was 43 pints- and because of all of you, we hit 48!!!!

This event is always so emotional for me and I know I say that every year but this year was even more. So many more people whom I've never seen before at our events were there- and we had 17 people who were first time donors! Just incredible!!

I caught myself fighting back tears several times while watching everyone donate- so many familiar faces there- our neighbors support us in everything we do- and I heard Rob joke a few times how more than half of our block was there at one point or another throughout the night. Acquaintances and friends from Jackson's school, former students and coworkers, friends from all over town, a couple family members, Jackson's kindergarten teacher, and even a fellow CHD family heart emoticon.

We are once again so incredibly grateful to all of you for taking the time to come donate blood in honor and memory of Hayden and of all the times he received blood transfusions and was on ECMO. Thank you once again for making this part of our mission with Hayden's Heart successful- couldn't do any of this without you!!
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We had a small door prize raffle and the winners are:
- Carol Rouski
- Janet Corso
- Karen Zambrano
- Tamara Beresky
- Casey Zdarek
Please email me to claim your prize!!

Glenn head

Those swollen Glenn heads. What I wouldn't do to go back in time three years to this very day when our lives were so full of hope I could burst. Three years ago today Hayden had his second of three life saving surgeries- the Glenn. In the heart world, we have a term for when our warriors go into one of these surgeries- we all pull together and root each other on in hopes that child will 'ROCK THE GLENN' (or Norwood or Fontan). Let it be known, Hayden rocked it harder and better than anyone. But no Glenn baby can escape that damn Glenn head- that swollen head and those terribly painful (so we are told) headaches. Looking at this photo now with his swollen little head I can't even take how much he looks just like my sleeping Hudson.
Hayden rocked the Glenn so well we were going home in 6 days total- and that included an extra procedure that had us staying an extra day. So 5 days of recovery for an open heart surgery. Still takes my breath away when I think about it. And the hope- that wonderful feeling of hope that was filling every inch of my body all the way from the bottoms of my feet to the tips of my fingers. This week we were told Hayden practically cured his own brain injury that he suffered while recovering from his Norwood. The neurologist wouldn't use those words of course- but he did say- verbatim- 'I no longer see the damage we saw at his last MRI in March.' And yes- I remember those exact words because once I figured out what he really was trying to tell us, I fell to my knees in the most joyful and hopeful tears I think exist. You never forget moments like that.
Hayden had his Glenn July 30th- and we went home August 4th. The week we were home we spent indoors- out of the hot sun- and letting him recover a little more before introducing him to the world. I am sure I've written about this before- maybe even last year- but we had so many plans already in place for our sweet warrior Hayden. In two weeks we were supposed to be going to my hometown and introducing him to all of our extended family and friends there. A month after that Hayden was going to have a huge celebration at the beach for his baptism- he'd already been baptized in the privacy of our pod space the morning of his Norwood- but his godparents weren't able to be there and neither was our family and friends so we had a beautiful plan for this celebration and I was loving finally planning something more than doctor appointments or pre-op visits for Hayden. Just 12 days after we went home from the Glenn, Hayden died- and instead of planning a celebration, I was planning a funeral. I know some people will think or even have the nerve to say 'but you were still celebrating his life'. No. Please don't say that. A funeral is no way to celebrate a five month olds life.

So this time of year is always incredibly and indescribably difficult for me. This week three years ago my heart, mind and body were so completely full of happiness, hope and peace for what our lives were headed for next. And now every year today starts a constant pain again of what was to come for Hayden and our family over the next two weeks- and then of course ultimately the rest of our lives.

I woke up this morning thinking of Hayden on this day three years ago and of course cried at the thought of him flying through this surgery and how I just couldn't wait to move forward in our lives together as a family. If only we would have made it to the Fontan so you could've rocked that too. Where would we be now...it always comes back to what would life be like now with you still in it...

NJ golf tournament a success!!!

Thank you to all who supported 2nd Annual Golf Tournament this past Friday at Preakness Valley Golf Course in Wayne, NJ!
We were thrilled to honor a very deserving family with two special heart warriors, Charlie and Brooklyn. Honored to have them at the luncheon afterwards as well!!
Thank you again to our dedicated neighbor, Allan Ford- this tournament would not exist without you! Thank you to the Auskings family for rounding up several golfers and sponsors- so incredible to see this family so well supported! Also, thanks to our hole sponsors, donors to our door prize raffle, and to the 87 golfers who came out and supported Hayden and the Auskings family!
The weather was perfect and the event could not have gone better! We are so blessed to have such great support and hope to see you all there again next year!!