To Honor Him

What was I going to do?  I walked into my house and saw two children that needed me. I looked to my side and saw a wife that needed me.  Sure, I suppose I had a choice, but realistically, I only had one option.

After fighting a brave fight that lasted more than five weeks, our son Hayden quietly passed away. He never got the heart he needed after a virus attacked the one he was born with. In the span of 39 days, my wife Jenn and I saw our newest addition, the final, perfect piece to our family puzzle, go from being the most beautiful, peaceful, happy baby boy on Earth to being taken from us in a cruel, unjustifiable way we will never comprehend. We would have taken his place if we could have, but life doesn’t work that way.

It was September 20, 2011 when we lost him. Jenn and I had to figure out how to move forward. We did it differently. After all, there is no “right way” to handle something like this. It took us years to figure that out. I was impatient with Jenn when she needed weeks alone in bed, to grieve before taking her first steps forward. She didn’t understand how I could continue living, working and functioning with any positivity after living the nightmare we had lived.

I look back now and can honestly say that I have no idea how I’ve survived this. There is no magic formula, no handbook. We all know that. There aren’t things that I can write on a list and say, “Yes, I did these things well” or “No, these weren’t the ways I should have handled this.” I can really only say that my journey forward started when I walked into my house after leaving the hospital for the last time. I saw my son Nick and my daughter Nahla. And I saw Jenn, my partner for the last decade, by my side, in need of strength.

I’m a very lucky man. I’ve always known this. I have an incredible marriage and fantastic children. From the time I walked inside my house that September afternoon, I realized that what I had 40 days prior, I still had, in addition to this incredible heartache. Jenn, Nick and Nahla were so important to me and needed me so much. How could I let them down?  So I had to figure this out. And no, it’s never been easy.

I did my best to let Jenn grieve while grieving myself. And while I probably never went through the grieving and coping process the right way, I did it my way. I helped my wife and continued to raise my children while thinking of Hayden all the while. I imagined him, looking down at his family, watching everything we did. Would he want us to stop functioning in any productive way? Would he want his brother and sister suffering because their parents stopped being parents? No. I had to honor him. I had to continue being “Dad.” He’s always been in my thoughts. He’ll always be my little “Hay Day,” as I called him, but I’ve survived because, as I said previously, I’m a very lucky man. I have so much to live for. From the day we suffered our biggest loss, I only had one option.

A Beautiful Mitzvah

My beloved grandmother started every morning the same way, sitting in her favorite chair next to a large window watching a flurry of busy birds eagerly feeding from the bird feeders my grandfather had lovingly built for them. She always told me how fascinating nature was, the pecking order of life all represented on those bird feeders. The strongest birds commanding the prime feeding spots while the smaller, weaker birds frolicked nearby, patiently awaiting their turns at the feeders.

I used to think I was similar to those strong, resilient birds. After all, I came from a long line of resilient women.

All that changed, however, the morning our infant son, Hayden, passed away from a heart condition at just 39 days old.

On the last morning of his life, and in many ways, my life, I held him in a rocking chair blanketed in sunlight from a nearby window.  It was a window I had spent countless hours staring out of, dreaming of the day we would take Hayden home and this nightmare would be over. That day never came.

On his final morning, I could feel him slipping away from me. I knew the time was coming to let him go, for him to gain his angel wings and just like those beautiful birds my grandmother so loved, fly away from us forever.

His heart was so weak and his tiny body bruised and broken from fighting so hard to stay with us. He no longer resembled the healthy baby boy who had graced our lives just five weeks before. The knowledge that the fight had been lost and the end was here was inconceivable.

There are no words to describe the way the world looks after the death of your child. With vacant eyes and beaten spirits, my husband and I left the hospital to be with our two other children who were patiently waiting for us at home with their grandparents, hoping against hope that their baby brother would be coming back home with us.

With Hayden’s struggle over, mine was only beginning. The journey to come back to my family, to be present for them, to fight my way out of the darkness that threatened to pull me under and never let go, was intense. The pain was unrelenting, searing and all-encompassing.

And then, ever so quietly, hope slowly began to take form in the broken corners of my heart. Somewhere in the midst of all the despair, the voices of our two other young children were able to reach me. In my oldest son’s eyes, I could see Hayden urging me to keep fighting. So I fought, not for myself but for them and for Hayden.

During our time at the hospital with Hayden, we crossed paths with so many people who changed our life in countless amazing ways.

One particular morning, we met a cantor who volunteers as a chaplain at the hospital. He quietly offered us the wisdom and ability to save ourselves after Hayden’s death. He ever so patiently listened to our cries and our pleas. How could God do this? Why us? Why Hayden?

He didn’t pretend to know the answers and didn’t attempt to explain the mysteries of the universe to us. What he said, though, would change us forever. We had unknowingly found ourselves at the crossroads of our lives. Would we lie down and let this terrible loss defeat us and our family? It would be so very easy to succumb to the anger, the grief and the despair and really, who would blame us?

Or we could fight. We could keep fighting for Hayden. Fight in his name for his legacy. He came into this world and forever changed everyone who met him. That didn’t disappear when he left us. We could change the world in his name, a beautiful mitzvah (good deed), as it is known in the Jewish faith.

So we did. We chose to keep fighting. We chose to honor our cherished son. We chose hope and light over despair and darkness. We founded Hayden’s Hope in September 2011, just a few short days after Hayden’s death. Our organization financially assists families with children awaiting a life-saving organ transplant. To date, we have raised over $170,000 for families going through the unimaginable. Our hope and mission is to be able to alleviate transplant families’ financial concerns so that they can focus solely on their child. It brings us tremendous comfort to know Hayden’s story has inspired so many to give in his name and has raised awareness for the great need for organ donation within the pediatric community. Hayden’s spirit is strong and lives on in the children we help through Hayden’s Hope.

I am proud to say that at the crossroads of my family’s life, we chose hope. We are deeply battle-scarred, but we are here. And that’s all we could have hoped for.

The 39 Day Impact


Hayden's Hope has raised $160,000 since Dari Nowkhah, sports broadcaster for the SEC Network, and his wife, Jenn, founded the organization in 2011. They started the organization after losing their infant son, Hayden, at 39 days old as he awaited a heart transplant.  Hayden’s Hope financially assists families with children awaiting a life-saving organ transplant by helping cover medical and non-medical-related costs.

"The overwhelming costs associated with the transplant process, often including relocation and the inability of family members to work, can be crippling," Nowkhah said. "We help these families focus not on finances, but on what is most important, the child who needs them."

At age three, Charlie McMicken needed a heart transplant. The following year, he received his new heart and a chance at life. But during that year’s time, Charlie's father John McMicken was unable to work, placing the family at a financial disadvantage. Hayden’s Hope made a financial donation to the McMicken family, and the extra money allowed them to focus on the life of their child.

"In addition to the very generous donation, we were reminded that we were not alone. To this day, Hayden's Hope still follows Charlie on his lifelong journey," said Charlie’s mother Sarah McMicken.

Hundreds of miracle makers have shown their generosity by financially assisting these families through Hayden’s Hope as well as by giving the gift of life through donating blood. Former Heisman Trophy winning quarterback Tim Tebow recently endorsed the organization’s mission and its love for children.

"I urge people to support Hayden's Hope," said Tebow in a promotional video. "It is an organization that makes a difference in a lot of kids’ lives."

Though his life was short lived, Hayden's life has had a lasting impact. He has touched the hearts of many and has inspired incredible joy, love and hope in thousands. Hayden's Hope is an organization that makes a difference in the lives of many children just like Charlie, but that difference all started with Hayden.



The Ocampo Christmas Miracle

On Dec. 24, 2012, Cisco and Cora Ocampo received the greatest Christmas present they could ask for: the gift of life for their child.

Their second son, Jordan Ocampo, was diagnosed with kidney failure at his 12-month-old checkup in July of 2010. For two years, Jordan endured numerous check ups and constant vomiting, all while being on at home dialysis. The bills associated with taking care of Jordan quickly stacked up, and the Ocampo’s found themselves in a serious financial situation.

After struggling financially, they decided to contact the Children’s Organ Transplant Association for aid and received a gift from Hayden’s Hope.

Not long after Jordan’s transplant, the Ocampo’s discovered that Jordan’s older brother Luke, born in 2007, would also need a kidney transplant soon. Luke was born with congenital hypoplasia, or smaller than normal kidneys, and he was expected to have delayed kidney failure.

Thankfully, on July 4, 2014, Luke received his kidney transplant, and the family received another surprise gift from Hayden’s Hope.

Though the organ transplant process is a worrisome and painful experience, it’s one that is made easier through the generosity of others.

“Please carefully consider supporting the legacy of giving hope to kids that have transplant and related needs,” Cisco said. “We love Hayden’s Hope so much.”

The donations received from Hayden’s Hope have helped the family continue a healthy life together, as it has and will with numerous others.

Please check out their Facebook page by following the link below.

Gandee Photography's Picture-perfect Resolution

Ryan and Lacey Gandee generously resolved to support Hayden's Hope in 2015.

Ryan and Lacey Gandee generously resolved to support Hayden's Hope in 2015.

It seemed like just another workday for Lacey Gandee as she sat in the control room of an ESPN studio, prepping logistics for the day’s next show. She didn’t think much of it when one of her co-workers, with whom she was barely acquainted, asked if he could record a video for an organization he held very close to his heart. What came next would inspire Gandee to make a commitment to Hayden’s Hope.   

The tape began to run and Gandee sat in the booth, listening. Tears started brimming in her eyes, as SEC Network Host Dari Nowkhah began to share his story about the tragedy that claimed his baby boy Hayden’s life just 39 days after birth. He conveyed the shock and utter dismay he and his wife, Jenn, felt as they were taking their infant with a 102 degree fever back to the hospital after six days of life. 

After days of tests, doctors realized that a virus had attacked the perfectly healthy baby boy’s heart, placing him on the waiting list for a heart transplant.  Days later, Hayden suffered a devastating stroke.  Doctors then told Dari and Jenn that the damage caused by the stroke would remove Hayden from the transplant waiting list.  

Hayden had suffered more in those few weeks of life than any infant should have to suffer.  Knowing their child would never receive the heart he needed, Dari and Jenn decided it was time to let little Hayden go.  

After losing their son, the Nowkhahs decided to establish Hayden’s Hope in collaboration with the Children’s Organ Transplant Association (COTA).  The goal of Hayden’s Hope is to raise awareness of the need for pediatric organ donation. Today, Hayden’s Hope provides a means to raise money for families of children awaiting a life-saving organ transplant.  One hundred percent of the money raised goes directly to families for medical and non-medical related expenses. 

 After listening to Dari’s personal testimony and learning about the great need for awareness and funding to benefit families nationwide, Gandee spoke to her husband and they decided to make a year-long contribution to Hayden’s Hope. 

Hayden’s Hope stuck out to Gandee and her husband not only because she worked with Nowkhah, but because it seemed like an organization that wasn’t widely known and didn’t boast a long-standing donor base like other charities. 

“We felt like we could do more good giving to Hayden’s Hope than another organization,” Gandee said. 

Through their photography business, the Gandees decided to donate 10 percent of every family portrait session in 2015 to Hayden’s Hope. Additionally, Gandee photography will donate $50-100 from every wedding shoot this year. 

The Gandees wanted this year’s resolution to break out from simple self-improvement. Instead, their family wanted to give back to their community and support needy families trying to stomach heartbreaking circumstances. 

As a general rule, many New Year’s resolutions start and end with self-serving goals: bicycle more, knock-off sugar, vacation generously. But this year in an act of unselfish defiance, the Gandees’ decided to powerfully affect families desperately desiring for their children to grow-up healthy, whole and happy.

And that’s a picture of purposeful generosity worth a thousand words.