A Mother’s Personal Story of Love, Loss, and Hope

Organ donation. Those two words carry so much weight – so much hope – so much joy. Those two words mean life.

It was 1am the morning of April 17th, and my daughter Hannah had been waiting for her heart 11 days. Each day seemed like a year, time moved in slow motion inside the walls of the hospital. Yet, when I looked out the windows of the NICU, I would see the cars coming and going and people hustling about, like they didn’t have a care in the world.

I pictured myself walking down the street and grabbing onto a random person and saying, “My baby needs a heart, are you listening to me? They say she can’t wait long, she’s on the fence.”

But, I had to realize that these people had their own issues, and challenges. I couldn’t get angry, I had to put one foot in front of the other and carry on.

So, back to April 17^th, 1:00 a.m.

We started to hear a beeping noise. The noise came from the pager issued to every parent with a child on the UNOS list. Hannah’s dad, brother, and I had just left the hospital after a midnight visit. We made it as far as the parking lot. The number coming through the pager corresponded to a 5-digit hospital extension.

Could it be?

We just left her 5 minutes earlier, so the 3 of us rushed to one of the courtesy phones in the lobby and dialed the extension. 
A soft voice spoke on the other end of the line, ”What if we told you we have a perfect match for Hannah, a good strong heart?” The moment of disbelief, joy, and awe quickly became tempered by the realization that somewhere, some place, some mother had lost her child and her heart was weeping.

The conflicted feelings are known only to this legion of women referred to as “heart moms” (or recipient moms). The rest of the night, and following days, generated a whirlwind of emotions – emotions which I will cover in future blog posts.

At that moment I put my focus on Hannah’s “donor mom” and the letter I would sit down to write to her and her family. We knew nothing of the circumstances of her child’s death in the beginning. I didn’t need to know the details; the only detail I knew was that Hannah had a new heart and a new life.

How do you begin to put that in a letter? Into words?

As I sat in the NICU, watching my daughter’s chest rise up and down in a smooth manner, the nurses let small bits of information come my way.

One nurse said, “She has a little boy’s heart.” And then it hit me; I could begin my feeble attempt at the “thank you” letter. Thirteen years earlier, I was that mother who lost a baby boy. He didn’t have the option of receiving a second chance like his sister had.

Although, they shared the same heart defect, the medical community at large had neither the technology, nor the knowledge about organ donation in place to save him.

Because of my former loss, I could actually put down on paper my true, experiential feelings about her heroism. Because I know her pain, I would not take this priceless gift for granted.

My letter was one draft, no rewriting, no editing necessary — and it was 2 pages long. I knew what to say and I knew that she would know it came from my heart. We did have the opportunity to meet and we keep in contact even today — 14 years later.

When the Christmas came after Hannah’s 1998 transplant, we kept ourselves busy with the holidays and celebrating Hannah’s first Christmas. One evening I received a call from Kris (Hannah’s donor mom). She wanted to ask me 2 questions. The first was, “How did you get through your first Christmas without your son?” Although, I keep that conversation private, I will reveal that we talked about our boys and what they mean to us.

The world knew them for a few days, but we carried them in our bodies for 9 months. It meant so much for us to share this connection. The second question was more of a request. “When you talk about Hannah and her new heart can you always say his name — Trevor? He has a name and he was here and it’s important that everyone know his name.”

Of course I will and I’ll continue to say. “Trevor Neil Frisch saved my daughter’s life”.

Want to help? Support Catherine’s personal mission of spreading the message of life, the message of Organ Donation by purchasing our Real Men Are Organ Donors shirt. 10-20% of all sales are donated to charity.

About the Author, Catherine Grinnan  Twitter Handle @cathygrinnan

Catherine Grinnan is your sassy everyday mother of 8, business woman and blogger living life at wharp speed.  Catherine has a charity called Pediatric Heart Association that was formed because of the life experience of having 3 children born with Congenitial Heart Defect.  Catherine and her daughter, Hannah, speak on a regular basis about heart disease, organ donation and how love can get you through anything.  Catherine’s favorite past times are mani/pedis, her grandchildren, and learning new cheers that her 3 teenage daughters are practicing.  You can contact Catherine through LinkedIN.  Come back at visit Catherine at RockScar Love where she will be blogging bi-weekly!