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Seeing Friends Have Babies as a Parent to a Terminally Ill Child

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I exist in two worlds. Both are the worlds of my peers, but I feel they could not be more different. In one world, I see pictures of glowing new parents with flushed, pink, chubby newborns resting peacefully swaddled in the traditional white, blue and pink blanket. Their mothers often 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 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 three of my friends have welcomed beautiful new babies into the world. In the last two days, at least three other friends have bid farewell to their children forever.

Our third child, James, was born with a chromosomal disorder called trisomy 18 or Edwards syndrome. It is the second most common trisomy disorder (second to Down syndrome). Unfortunately, it is associated with severe birth defects and a short life span. Many babies with trisomy 18 die in utero. Of those who survive, 10 percent may live to see their first birthday. It is a terrible, devastating disorder associated with mental and physical disabilities, neurological, cardiac and respiratory abnormalities, and early death.

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

Every day is a rollercoaster of emotions. I see other families who have three children, too, and I feel a shot of emotion course through me. It feels so unfair that we were dealt this hand, that James was dealt this hand.

At the same time, my heart swells with joy and relief when every baby joins the world. 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 think of what this is probably like for him. He likely doesn’t realize he is different from other kids. He may not know he has to work harder just to breathe, to eat, to fight a cold, to survive. He just is. He lives, he breathes, he snuggles, he watches the world.

James just is. In a world where many of us often 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 more, to live in the moment and forgive more easily, and to open my heart wider, even when that can make 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 I believe 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.

Image via Contributor.

A version of this post originally appeared on Loving James.

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Originally published: November 16, 2016
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