Lemons Into Lemonade

Author: Tiffany Intal

The death of an infant is not only tragic, but also a very confusing experience for people to process. A minority of our family and friends were under the impression that losing Ethan would somehow hurt less because we didn’t have the opportunity to “get to know” him. Some of those conversations took place even before we were forced to withdraw care.

It’s not that people were being insensitive or cruel. I think they just didn’t know what else to say to make me feel better. It was a huge struggle not only for me, but for those around me. So, to some degree, I’m thankful they shared their thoughts, because it inspired me. The shock of his passing subsided, and people moved on with their lives, but it became my personal mission to find ways to honor my son’s memory.

The NICU staff assigned to our case was amazing. Their compassion made the experience of losing our baby just a bit more bearable. I cannot begin to fathom what it must feel like to care for sick infants on a daily basis. It must be absolutely heart-wrenching to have to watch parents cope with the imminent death of their baby.

A few weeks after Ethan passed away, I decided to coordinate a “warm blanket drive” to thank the staff that carried us through such a cold and devastating time. I wanted to help them spread their warmth to other families the way they spread warmth to mine. The NICU staff gave those blankets to parents who were forced to hold their baby for one last time. Each blanket served as a keepsake for grieving parents and as a tribute to Ethan.

Ethan received two blood transfusions and fresh frozen plasma when he was still alive. Those transfusions gave us a few more days with him. I wished there were some way I could personally thank his donors. It breaks my heart that they will never know what a huge impact their donation had on our family. And because of Ethan, I admire and respect all of those selfless people who choose to donate blood.

John and I held the Ethan Nikolas de Leon Memorial Blood Drive on what would have been Ethan’s first birthday. It seemed right to give back to the community as a way to thank the anonymous donors who bought us a few more days with our son. I contacted the Blood Centers of the Pacific—the same organization that provided the blood and plasma for Ethan’s transfusions—to coordinate the drive. Our blood drive was a huge success. We had friends, family and even strangers donate blood in memory of Ethan.

Niki also received blood transfusions when she was in the NICU and when she had her port surgery last July. So for her second birthday, John and I hosted another memorial blood drive at her party on February 26—one day before the three-year anniversary of Ethan’s death. We had a lot of first-time donors for both blood drives, and I like to think Ethan lives on in the lives saved by the generosity of our donors. It felt good celebrating Ethan’s life that way.

Representatives from Niki’s drug company, Novo Nordisk, even came out to film Niki’s party. Soon Ethan’s story will be shared with thousands of people on a video they are creating. It was such an honor to work with them on this project.

Hosting charitable drives can’t happen as often as I’d like to. For the past two years, we’ve walked in memory of Ethan for our local Hemophilia Walk, too. But, there is something I do on a regular basis to help me cope with my loss and continue to share Ethan’s story. That something is writing. Maintaining this blog and my personal blog helps me lick my emotional wounds. Here, I can tell Ethan’s story, raise awareness and connect with people in the community.

We often live our lives wondering what our purpose is on this earth. When something incomprehensible like the death of a child happens, we wonder about its purpose, too. Losing Ethan may never make sense, but I chose to make lemons into lemonade rather than wallow in my sorrow.

As far as I’m concerned, Ethan will live on for as long as his story continues to touch the lives of others. Every blanket, every drop of blood, every step we take and every word I write ensures that Ethan will never be forgotten. And wouldn’t you know it, he lives on in you, too.
I can’t thank you all enough for opening your hearts to me and my son’s story.

Read more about Tiffany's life at The Art of Lion Taming.