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  • Writer's pictureElizabeth Leon

The Invisible Boy

For those of us who have lost children, there is a constant tension between the reality of our life without our child and the "what might have been" we can never stop imagining.

I took John Paul Raphael to the zoo yesterday.

You might have missed seeing him if you didn’t look very closely. It might have looked like there were just three of us together on that perfect June day, my best friend Heather, her 5-year-old son Nathan, and I. It was a busy morning getting Clare to school and myself out the door, busy in the commuter traffic driving to meet Heather in Vienna, busy chatting with her and Nathan as we drove into the city and made our way to the zoo. Busy applying sunscreen and racing to the bathroom. Only as we began a slow walk up the curved path to the Big Cats did I feel the sudden absence of one tiny boy.

John Paul Raphael should be here, I thought. Heather and I had children on a different timetable, but we always joked I would have one more baby with her when she was ready to start her family. My pregnancy, although 4 years after hers, still gave us a chance to have young ones at the same time. Or it could have.

trisomy 18, grief, child loss
Elephant Selfie

This could have been a sunny outing of two best friends and their two beautiful boys. Grief slipped silently over me as I made my way through the zoo with Heather and Nathan, feeling John Paul’s presence and absence at the same time. I felt joy and peace and sorrow. I felt him with me in the emptiness of my arms. He was there in the ache of my chest as I watched the mama orangutan nursing her wiggly baby, my broken-heart jealous that she still had that privilege. He was there in my delight as I laughed aloud at the armadillo nuzzling a brown-bag as it tried to slurp up the live crickets hidden inside. I felt his small hand in mine when he wanted to be free from the constraints of his stroller to run through the zoo. I wiped ice cream from his shirt and sticky fingers as it melted from the cone. I freely engaged in this “magical thinking” as coined by Joan Didion – this alternate reality in my mind that paralleled the actual world – where John Paul Raphael lived freely and somehow became part of my experience.

This is tricky business and I have to be careful when I choose to enter in. Magical thinking doesn’t work when I am enjoying a 4-day ski vacation in Park City, Utah or spending a lazy Saturday getting tipsy with Ralph and some friends at a winery. In fact, in those cases, magical thinking engenders guilt and grief instead. What am I doing enjoying these activities? I would NEVER be able to experience this if John Paul Raphael were still alive!!!!! There is a tender tragedy to the freedom I have because my baby died and my youngest living child is eleven and not one. It makes no sense to feel guilty for still living and trying to learn to enjoy my life as God has allowed it to enfold, but it is still messy in my heart.

Five babies in ten years

And then there is the reality of the exhausting, draining years of raising a baby and a toddler, years that took every ounce of sacrifice and generosity and self-giving that I could muster the first 5 times through. I remember having all those young kids and thinking I would never find my way back to being my own person or having any time to myself. At the zoo yesterday, I looked at all those parents of babies and young children, even my friend Heather who is also 47, and especially those parents whose children have special needs, and I thought: How could I possibly do that again? Why did Ralph and I ever think we had the energy or the strength or the grace to start over???

trisomy 18, grief, child loss
Heather and Nathan

The shameful subtext to that is this whispered thought: Do I really wish John Paul were still here? When I am managing to enjoy the perks of having children who don’t demand so much of my time, am I secretly relieved to not be carrying the burden of another child to raise?

No. No. NO. NOOOOOOOOO. I will silence those doubts with the truth I know in my heart. I want what the Lord wants for my life. I prayed for His will through every minute of my pregnancy and longed for my child to be saved. If He had allowed John Paul Raphael to live, whether mentally and physically disabled or not, I trust he would have given me the “grace of state” I needed to accomplish His will with strength and hope and joy and that would have been my perfect path. Instead, this is my perfect path and He is giving me the grace to live this life.

I must remember that whenever I look at someone else managing to heroically live a life I cannot imagine I would have the strength to live that the grace to live that life is only given by the Lord when it is needed. I know this to be true and I hold it close to my heart. It doesn’t make that nagging guilty grief disappear entirely, but certainly lowers the volume.

trisomy 18, grief, child loss

Near the end of our beautiful day together, Nathan wanted to ride the carousel, a striking attraction at the National Zoo due to its variety of artfully crafted creatures instead of just horses. You can ride a naked mole rat or a mollusk or an armadillo. As Heather and Nathan lined up to buy tickets, I wrestled with whether or not to join them. My grief held me back. It had been hard to go through the crowds of families so alone and somehow riding the carousel without any of my children, especially without my little boy, seemed like too much. I bought a ticket anyway, urged on by my gentle inner voice reminding myself that I want to be brave. I want to do hard things.

As the previous ride came to a stop, we made our way onto the carousel, Heather and I following Nathan as he tried to choose an animal. Nothing seemed right and we were amused as he circled the whole ride and finally stopped at the only horse. He was a traditionalist, I guess. Heather took the fox next to him and I mounted the whooping crane in the row ahead. The calliope music began and the carousel started to turn. The wind blew against my face as I went up and down. I closed my eyes against the breeze and pressed my forehead into the cool brass pole of the whooping crane. John Paul Raphael. His name was a prayer, a plea for him to come and reveal himself to me. I held myself in this sacred moment, spinning slowly through space. The veil between what actually is and what could have been seemed very thin and I felt able to straddle three alternate realities all at the same time.

trisomy 18, grief, child loss

I recognize that these are impossible exercises of the mind, but try telling that to my heart. There was no way to stop it. First, I went all the way back to that mysterious moment in the depths of my being when an egg met a sperm and for some unexplainable reason they did not connect perfectly. I go all the way back there so the alignment happens just right and the resulting child sits next to me on the carousel, a perfect 17-month-old boy with dark brown hair and dark brown eyes, laughing as he clutches the pole. I stand next to him, my arms tight around his waist to keep him from sliding left or right. I laugh and kiss the soft skin of his chubby, sweaty neck and snap a selfie to send to Daddy of us on his first carousel ride.

Maybe this is too much. Maybe I can’t go that far back and change his very chromosomes. Maybe I can only change the hourglass so that instead, I am sitting on the carousel bench. (I always wondered why they even had those, but now I know.) I am the mother of a disabled but very loved child, still small and always sick, but one who somehow managed to beat the odds against Trisomy 18 and make it 17 months. Maybe he has a feeding tube or some kind of brace, but it doesn’t matter. He is my love, the joy of my heart, and his eyes sparkle with the gift of his life. We are keenly aware that every minute together is a privilege.

And then of course there is the 3rd and only true reality, one where my child is indeed still present. Is indeed on that carousel with me, but only in the depths of my heart, in the fire of my love, in my memory and in my longing to do anything to bring him back to my life. Strange as it may be to understand, all three of these imaginings bring me more joy than sorrow. They make my little boy seem more present than gone.

trisomy 18, grief, child loss

I promise you, for all of us that have lost children, our invisible child is always with us. They may be here trapped in the age they were in that agonizing moment when we last saw them alive. They may have, in some impossible, supernatural way, managed to age and change and be with us instead as the person they would be in this day and time. Or perhaps it is neither. Perhaps it’s a third, ethereal presence that’s truly only spiritual: just a sense of them, but a presence that is still longed for, however intangible and unfulfilling it may be to our corporeal selves.

Regardless, John Paul Raphael is still here – held in the tension between the visible and invisible reality of those of us who have had to let go of our children far, far too soon.

So this is what grief feels like today. Happy 17 months, John Paul Raphael. We love you and miss you.

Let yourself be loved.

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