a rainbow after the storm...

14 July 2016

‘A "Rainbow Baby” is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.’

It seems a lot of grieving moms struggle with whether or not to have another baby. There are so many emotions tied into this, and personally I went through them all. Right after Hayden died I remember standing on my deck saying to my husband ‘I need to have another baby right now. We need to adopt a five-month-old right now’- and at that moment that’s exactly what I wanted. And I remember the next morning thinking I can never have a baby again. The fear of having another baby with a heart condition and possibly having them die was too overwhelming and not something I wanted to even consider. The first couple weeks to a month after he died my mind felt like a ping-pong ball- going back-and-forth between wanting a baby right that second and not wanting another child ever again.

My chest and body ached for him to fill the spot he always was in- and obviously I wanted a baby and just because I lost Hayden didn't mean I still didn't want a baby- I wanted him, no doubt- but still ached to be able to mother another child on earth.

A couple months after Hayden passed away I asked my husband what he thought about having another child. He was 100x more scared than I was -which was a lot considering I was scared to death. But, because he knew I needed and wanted it so badly, he agreed. However, I guess because of the stress of grieving, my body just wasn't ready. With my first two, we practically looked at each other and got pregnant. But with this one it was different. I ended up struggling for what would seem to an outsider a short period of time but struggling nonetheless to get pregnant. I finally decided to try acupuncture and after three months of treatment, I finally read the words ‘pregnant’ on that test. So, between the two months after he passed away the six months without any treatment and the three months with treatment, 11 months after we lost Hayden, I was pregnant with our first rainbow.

I remember reading the test and both of us literally saying ‘thank God we're finally pregnant’ but almost simultaneously, we thought ‘Shit were pregnant. Now what.’ Now we have to wait for 20 weeks. Now we wait, and see what happens. But it wasn't just waiting. It was full of anxiety and stress. Part of me wanted to believe that we had already seen our family tragedy. So, this baby was bound to be perfect in every sense of the word and we wouldn't have anything to worry about. But, the other part of me knew that there are some families that have more than one heart baby and unfortunately some that have more than one heart angel. And of course, families who have more than one child with a health issue- heart related or not.

So, for what felt like forever, we were in constant stress and anxiety and worry. We ended up going to see the cardiologist at 18 weeks because I just needed to do it as soon as they would allow. I'll never forget the moment she took that probe over my stomach and within three seconds she said loud and proud ‘FOUR CHAMBERS!!’ Those words still bring tears to my eyes typing this. At first, I didn’t believe her and said ‘how can you possibly know that so quickly?’ She happily showed it to us on the monitor. And, clear as day, there they were! Four perfectly formed chambers! We both cried such happy tears and were beyond relieved. But the second we got into the car, my tears made a shift. I couldn’t stop thinking about how I felt I had failed Hayden. I was beyond grateful that his older brother Jackson had already been cleared of a perfect heart and now his younger brother was given the same- so why not Hayden? Why couldn’t I have given that same gift to him? It was a painful ride home as I desperately tried to shift back over to the happiness that was first there at our appointment. Little did I know at the time that this would start the constant feeling of ‘bittersweet’ through every milestone and happy moment of my rainbows’ lives.

Unfortunately because of all we had been through, the settled and relieved feeling we felt in the doctors office that day faded. I was still incredibly anxious. The rest of the pregnancy I just kept waiting for the other shoe to drop. I kept waiting for them to find something else beyond the heart that would be wrong with him. I was afraid to believe and be naïve again and think that everything was going to be OK.

I remember the therapy sessions leading up to his birth. The focus was on our rainbow and how scared I was of how much I would love him. Fearful that because Hayden and I had a bond that was so rare and unique that I wouldn't feel it with my rainbow baby and therefore wouldn’t love him as much. I was afraid I would resent him. I was afraid I'd want him to be Hayden. I was scared to death of what was about to come. I wanted this baby no doubt, but started second-guessing my choices in having him so soon.

Those feelings lasted much of the rest of my pregnancy. There came a time that I had to acknowledge my real fears- I was afraid to love him and loose him. I was afraid to give my heart to him like I did to Hayden and have him die and leave me with another shattered heart. Once I allowed myself to admit that those feelings were the root to my fears, I was able to overcome them. I have always believed with Hayden that it was better to have loved and lost than to have never loved at all. And so with our rainbow, I would do the same. I would love him with all I had to give and if he too was taken from me, at least I know he would die knowing he was loved more than life- just like Hayden did.

Fast forward to his birth- the moment I laid eyes on him I never let him go. My husband always joked when we had Hayden and said he’d tell his surgeon once he was done with the Norwood, he might as well surgically attach him to my chest because that’s where he’d be until his next surgery. And now that same joke (minus the heart surgeries) started again with Hudson. He went everywhere with me- I never let him out of my sight. I slept with him, watched him nap, woke up in a panic several times a night to check his breathing, took him out to dinner with friends, everywhere I went, he went. The very few times I did leave him, I was a nervous wreck. I started going to the gym once or twice a week when he was around 6 months old. I was in spin class- music blaring, lights dimmed. I told Rob to text me when Hudson woke up from his nap. Well, of course he decided to take an extra long nap that afternoon but when I called Rob and he didn’t answer, I started to panic. I called again- still no answer. So, in about 15 seconds I had convinced myself that Hudson had died in his sleep and with tears streaming, I jumped off the spin bike halfway through class to rush home. I just about got out of the door and my phone rang- Hudson had just woken up. SIGH…. I caught my breath and sat there thinking how will I ever live without the fear of my children dying? What kind of a life is this??

Since having Hudson, we have also welcomed another rainbow, Greyson. His pregnancy wasn’t planned, so the stress throughout it was less- it took awhile for the shock of even being pregnant to ware off. But the anxiety kicked in full gear on the day he was born. I was laying on the table of my C-section with tears flowing out the corners of my eyes- once again scared to death that something was wrong. I must have asked my doctor 15 times if everything was ok. I was again convinced he was going to either be born dead, or something was going to be tragically wrong.

As grieving mothers, our emotions- every single one of them- are more intense – more real- raw- than ever before. We know bad things happen to good people. We know babies and children die. We are no longer naive, living in what seemed a perfect world at one point in our lives. And because of all of this, we love harder, cry harder, and fear harder than anyone else. Having my first rainbow was tough in so many ways, but having him also saved my life. He brought joy back into my broken soul. He is now just over 2 and I look at him with so much love and gratitude for what he has done for me. His smiles, laughs, even his tantrums bring joy to my heart. He is heaven sent- they both are. They both have pieces of their brother in them and I cant imagine where I would be today without them and their oldest brother, Jackson.

Deciding to have a rainbow, and then having them can be so magical- and can also bring heartache. My hope for you is that you allow yourself time to feel all the feelings your body wants you to process through this time. If nothing else, I hope you realize that whatever you are feeling, you are never alone…

Hayden's Heart Monthly Beat- JULY

06 July 2016

Lots Happening in July!

Kids Paint and Picnic in the Park

A Paint & Picnic in the Park Event is being held at the Pavilion #1 in the South Williamsport Complex on Sunday, July 10, 2016 1:00PM!! Please register using the number below by Friday!

Rainbows will be painted on a 10x20 canvas. Hayden’s Heart will be providing a picnic following the painting! Please arrive 15 minutes early to get signed in and aprons on the little ones. This is a NON-Alcoholic event.

Portion of ticket sales will be donated back to Hayden's Heart, Inc. Please contact Jodi Rakoski with any questions. 570-846-0993

Summer Golf Tournaments:

New Jersey- Friday July 15th-


Preakness Valley Golf Course, Wayne NJ
We are honoring heart warrior Lena Gonzalez from Kearny NJ!
$125 single, $500 foursome

Price includes golf fees, cart, participants bag with Hayden’s Heart goodies, breakfast, drinks on the course, and a luncheon and awards ceremony immediately after the close of the tournament!

Please email to register!

Pennsylvania- Friday July 22nd


Wynding Brook Golf Course, Milton PA
We are honoring heart warrior Hope Goulet from Yakima, Washington.
$85 individual, $300 foursome

Price includes golf fees, cart, participants bag with Hayden’s Heart goodies, donuts and coffee, drinks on the course, and a luncheon and awards ceremony immediately after the close of the tournament!

Please email to register!

4th Annual Blood Drive!

One month from today, 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 approx 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

As much as I dread the month of August because it means Hayden's angelversary is upon us, I do look forward to sending 'Smile Sacs' to 60 kiddos in the cardiac units of four Children's Hospitals.
We would love your help in filling these bags- and sending some fun activities to the cardiac kids spending their summer in the hospital!

Please visit our Amazon Wishlist to purchase, we will be collecting through the month of July. Thank you to all who have supported us in filling these bags- so far over half of the items have already been purchased- AMAZING!!

(***UPDATE- Only 17 items left!!!***)

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. Our committee is busy collecting amazing items for our silent and live auctions- this is an event you won’t want to miss!

Formal invitations are being mailed soon! If you would like to receive one and are not already on our address (NOT EMAIL) mailing list, please email Ady at with your name and address and ‘GALA’ in the subject line- we will mail one out!

Tickets for individuals or tables are now available for purchase our website!

Angel Day

02 July 2016

With summer here and August creeping up, I wanted to share a blog I wrote for Sisters by Heart in hopes to shed some light and hope on that dreaded Angel Day us bereaved mamas and families have to find a way to survive through~

August 16th. A normal end-of-the-summer day for pretty much everyone on the planet. Spending the day in a pool, at a park, or maybe indoors because of the heat. Soaking up every last minute summer has to offer.

Not me. August 16th is the worst day of the year- the worst of my life. It is the day I was forced to say goodbye to my sweet Hayden. The day his neurologist and cardiologists sat in a conference room and told Rob and I that Hayden’s brain had no activity. That it didn’t matter how long we waited, nothing would change that. He would be alive on those machines as long as we wanted him to be- but that he would have no form of life and that we could take as much time as we needed- but that his brain was no longer active and he was essentially brain dead.  August 16th is the day the world I knew and had faith in came crashing down- so hard I couldn’t breathe for months. August 16th is the day I kissed his swollen head and fingers and toes- and every part of his body I could get to- for the last time. August 16th is dooms day in my world. And with each passing year (this coming marks four) it doesn’t get easier. It hangs over my head for weeks leading up- torturing me. Haunting me.
August 16th. The day my sweet Hayden died.  In our heart community we call this day their ‘angelversary’. I don’t know who made that up- but I like it. It’s not even a real word. But it makes sense to all of us- and we embrace the title as how else do you describe this day in such little words?

The first angelversary for Hayden I was pregnant- maybe 12 weeks. Rob and Jackson went to a water park for the day so I could basically cry my way through it without anyone watching me. I was hormonal- but I don’t think that would have mattered. Tears were gushing out of my eyes and streaming down my face for days before. Recollecting all the events leading up to what would be the reasons for his death. What I could have done to stop it. Pure torture in the highest form. Had we not went through with the discharge. Had someone else placed the chest tube. Had we went to a different hospital. Had we waited longer to ‘pull the plug’ for lack of better words.  The list goes on. That morning I sat on my couch with a cup of hot chocolate in the middle of August and watched my Hayden videos. I felt my body start to go into panic- they are in chronological order- so, the closer we got to August 16th, the more anxious I became. And right about at the point where I was sobbing so hard I couldn’t breath, the little bean in my belly started to do somersaults. I was only 12 weeks pregnant- but this was my third- so I knew what that amazing feeling was. I paused the slideshow and just sat there thinking this can’t be real- its too soon- and the more I tried to ignore it, the stronger it got. So, I looked up to the heavens and through my tears said, ‘thank you’. I knew from that moment on this rainbow and Hayden were deeply connected.

As the day went on and as each passing moment leading up to the time of death (2:40pm) I felt my body just want to give out.  I found myself pleading with God to let me go back in time and change it. Change the course that lead to where we are now. I kept hearing Rob and I’s conversation over and over again- the one when I was pregnant with Hayden when we were given 5 hours to decide what we wanted to do- terminate or go through with the birth and just hope for the best - his fear that we would have this baby and he would die- and me almost laughing like how could that ever happen- why would you ever even think that??

Rob and Jackson came home from the water park full of joy so it was hard not to get swooped up in that- for a moment. Jackson cried with me- probably more sympathy tears than anything else- and we watched some videos and looked at pictures together. We released heart balloons at the cemetery and just laid low together as a family. It was an intimate day with the three of us- surviving it the best I could.  The past two years have been much of the same- just our family taking some time to remember him and honor him with some videos, photos and a balloon release.

Our foundation in Hayden’s memory and honor compiles care packages called ‘Smile Sacs’ that are sent to four pediatric cardiac floors for the heart patients. We fill them with toddler and kid activities with Hayden in mind. I picture him digging his little hands into containers of playdoh, marker stains on his arms, and popping bubbles in the sun. Knowing these care packages are bringing smiles to heart kiddos on his angelversary brings joy on what is our saddest day of the year. It is our way to have Hayden’s memory live on.

I wish I had more hopeful words for our grieving community for ways to honor your angels on this day. This is different than their birthday- it is a day of grieving. The best advice I can offer is to allow your self that time to grieve, as painful and hard as it may be. Allow yourself time to do what feels right. If going to work is what is best for you- then that’s where you should be. If sitting in a ball on your couch and sobbing your eyes out feels right, do it. Embrace your needs this day and do whatever it takes to survive it.

Some other ways grieving parents have honored this day is:

  • ‘Feed the Fire’- take meals to local fire departments
  • Family day of fun together
  • Purchase gift for resting place
  • Toy drives
  • Random acts of Kindess in their honor
  • Release balloons or butterflies
  • Blow bubbles
  • Care packages for local hospitals

3.12.12 - 8.16.12

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