An open heart


I exist in two worlds. Both are the worlds of my peers, but they could not be more different. In one world, I see pictures of glowing new parents, flushed, pink, chubby newborns resting peacefully swaddled in the traditional white, blue, and pink blanket.  Their mothers gaze at them with a look of relief that labor is over and baby is safe and with a deep, abiding love. In the other world, I see tiny, elfin babies with wide eyes, pink lips, and clenched hands, cuddled against exhausted mothers with bleary, reddened eyes and tears coursing down their cheeks. In this other world, I see sweet babies wrapped in funeral garb, cradled by their bereaved parents. Parents saying their final goodbyes, never to hold those sweet babies again.

In the last two days, at least 3 of my friends have welcomed beautiful new babies into the world. In the last two days, at least 3 other friends have bid farewell to their children forever.

Existing this way is strange. I am so happy for the new parents, for the new babies. I am thrilled that the labor was successful, the baby is healthy, and that the mother is safe.  I love seeing pictures of these sweet babies. At the same time, my mother’s heart aches for those other mothers, sitting white-knuckled and nauseated in the NICU, watching their new babies undergo tests, have IV and endotracheal tubes and CPAP masks placed.

Every day is a roller coaster of emotions. I see families with 3 children, and I feel a shot of anger course through me. It feels so unfair that we were dealt this hand, that James was dealt this hand. So many of my friends have 3 children, all healthy and robust. Why not me? What did I do? Is this karma for my bad choices? Payback for my mistakes in life (of which there have been plenty)? Why us? Why him?

At the same time, my heart swells with joy and relief when babies join the world – trisomy babies and babies without chromosomal disorders. My heart sings when my friends have safe labors and post beautiful pictures of those sweet faces.

My emotions are constantly warring within me.

Then I look at James, and I remind myself that he doesn’t know. He doesn’t know that he is different from other kids. He doesn’t know that he has to work harder just to breathe, to eat, to fight a cold, to survive. He just is. The future isn’t something of which he conceives. He lives, he breathes, he snuggles, he watches the world.

James just is. In a world where we feel like we have to be doing something constantly, James is teaching me to just be. To sit beside him and just observe the world. To slow down, enjoy the beauty around me. He reminds me with his gentle, sweet presence to sit down and read a book, play with my kids, allow the laundry to pile up for another day. He reminds me to be grateful for what I have and to let go of what I don’t have. He is a gift to me. He teaches me so many things – how to love more, to let go of more, to live in the moment and forgive more easily, and to open my heart wider, even when that makes it so much easier to be hurt and to grieve. I don’t know if we have a purpose in this world, but if we do, then James’ purpose is to help open hearts – my heart but also the hearts of all those around him.

Thank you, little baby boy. You make me a better person.


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