It’s Memorial Day. I’m back in rainy Santiago after a quick trip to California for a lovely family wedding in San Francisco. In the very same venue, in fact, where Ryan and I were married two-and-a-half years ago, after getting engaged three Memorial Day weekends ago. Time since then has gone both quickly and nearly still.

Photos from a May day at Ocean Beach, CA with good friend and avid heart-finder, Courtney.

 

Returning home in May meant I was home over the days my family, friends, and I celebrated Lorenzo, the days when he felt guaranteed to be there with us one day, the days when I stocked up at Target because the baby things imported to Santiago can be double the cost. And I wanted to be prepared. I was “safely” in my second trimester and I was ready to start nesting. Then, on May 28, we received the first, devastating hint of the diagnosis. “The heart does not look normal,” my doctor said. By May 31, we were back in California.

May in California is beautiful. Sunny, breezy, the fog typically at bay. But I could feel something else in the air this time. I could feel the temperature of a year ago and the searing shock of our changed lives and the total disbelief that we had to say goodbye to our baby.

 

 

Last Tuesday, May 21, while I was home, Baby Hope lost her battle with HLHS. She was only a year and a month and 17 days old. She weighed 12 pounds. She lived most of her life in the hospital, under the care of doctors and the constant love of her parents and big sister, who fought for her with such strength and faith. Her mom, Amy, shared Hope’s journey with the rest of us. She was brave enough to reach out to me last summer for most of you/winter for me, and acknowledge how difficult both of our journeys as mothers—both of our choices—are. I was brave enough to read her blog every day since then to see, maybe, how Lorenzo’s life would have gone had Ryan and I chosen that path. Hope’s stats were so similar to Lorenzo’s, I felt like Hope provided a window into what might have been.

 

 

I saw what infection and blood clots and major bleeds and compromised organ function and difficulty breathing and not processing food really look like. I saw how it felt to know that Hope was not in fact eligible for the third of the three open-heart surgeries the doctors tell you about when your baby is diagnosed with half a heart. Hope’s only option was a heart transplant, which never came. I realize you can’t compare in these situations. Like most comparisons we might make between our lives and others’, it doesn’t help. But I needed to see what life was like for Hope and her mom and the rest of her family. (Just because we made our decision nearly a year ago to the day doesn’t mean I don’t still try to understand. As Ryan puts it, he can accept if he can understand.)

 

 

Some days, seeing the pain and the tubes and the listlessness on such a small baby validated our choice. I could see clearly what we spared Lorenzo. On other days, when she smiled, the view wasn’t so clear. Would it have been better to be holding my baby even if he was so sick? If so, who would that have been better for? Can you use words like “better” when such tiny souls are fighting for life? I no longer think so. As my group support leader put it, we may embrace both feelings. I can wish the best for Hope, as I did over the past year, and feel a sense of relief for Lorenzo’s freedom from the same circumstance. This isn’t a situation where we reconcile or barter or decide once and for all who is right and who is not right. Those words don’t work when babies are born with half a heart.

 

 

When Hope turned one last month, her brave parents posted a stunning video of her first year of life. I sobbed. How could anyone looking at her not break and cry out for an answer? It also made me wonder if Lorenzo would have made it that far. Understanding, it turns out, does not always spare us from wonder.

Forty-seven days after Hope’s first birthday, her heart gave out. Her mom held her. It was the scene of love and panic and shock and grief I imagined for Ryan and myself over those days we were making our decision. I knew in my heart a day like that would come; it was just a matter of when.

 

 

I’ve shared all of this in case you, too, might need to know what the other path looks like. Because I no longer believe one is right and one is wrong, I have to believe each parent knows what should be done for each child. No matter how they got there, Hope and Lorenzo are now free of pain. As a result, Amy and I know a pain unlike any other. I have a feeling she wouldn’t change a thing about her decision, and today I’m feeling like I wouldn’t either. The one thing we would surely sacrifice our own lives to truly change—two chambers into four—couldn’t be.

 

 

Today, I remember Lorenzo and Hope and all the babies like them. I remember their parents. My heart aches for them and, while it may beat as it ever did, it is forever changed.