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  • Writer's pictureElizabeth Leon

Landing in a Foreign Country

Updated: Apr 16, 2018

After the results of the genetic testing at 14 weeks revealed an 87.7% chance that our baby had Trisomy 18, we knew the 20 week ultrasound would be our next chance to get a better understand of our sweet baby's possible condition. It was agony to wait for that date and even harder to get through it.

Today I sit in a frozen place . I am afraid to move. For the last 7 weeks we moved securely within a place of unknowing. Yes, there were statistics and numbers and research, but there was safety in a place where the answer was neither yes or no. Possibilities lived there. Hope lived there. Healthy babies that learn to ride a bike and go to college one day still lived there. The end of that safe place was a locked door marked SEPTEMBER 20TH.

We told ourselves and we told others that most of these little sweet babies will show themselves, show their unique Trisomy 18, in some way on the ultrasound. We didn’t really verbalize to each other what that might look like to us. To me, I think it was going to be something really obvious, like the heart was so misshapen it would never work, or the brain was put together all wrong. Something big and loud and obvious. As the ultrasound progressed, we saw lots of perfect baby parts in all the right places. Tears rolled silently down my cheeks the whole hour. There’s my boy. Falling in love with his image and his parts. Taking him in. Looking at each fuzzy gray shape and imagining it as chubby flesh in my arms. Holding my breath at the sword that could pierce any moment as the tech paused or gasped or got silent... Things looked good to our naive and uneducated eyes. Ralph was hopeful. “He looks healthy to me, “ he whispers in my ear.

The Dr. barged in after, without eye contact and without introducing himself. (Not a good start-- I could feel Ralph bristle next to me at the Dr’s rudeness and lack of bedside manner). He began to look again at the ultrasound and highlighted a few small things. They were each so small and he shared each without gravity and seemingly without a lot of concern. A small septal defect in the heart. Likely would never need surgery. Probably would resolve on its own. The kind of thing where people sometimes say they have a heart murmur. Otherwise the heart looked good. He said the femurs measured a little short. Two weeks short. Big bones measuring small is something they sometimes see in Trisomy 18 babies. But maybe he just has short femurs. He thought the hands looked clenched. I couldn’t really see. I thought we saw fingers before; I thought we had pictures on another ultrasound of fingers. He showed us the brain and an area where normally you would see the beginning of the corpus callosum. He didn’t see it, but seemed to suggest that wasn’t necessarily a big deal. Could still develop and maybe doesn’t always show up until 22-24 weeks. Or at least that is what I remembered. And the cyst. The choroid plexus cyst. 1/3-1/2 of Trisomy 18 babies have one of these. But he talked about how it could resolve and the cyst itself wasn’t harmful. And sometimes perfectly healthy babies have them too. His manner was very calm. He seemed noncommittal, although he said these findings surely could suggest Trisomy 18. Maybe it was just my hopeful heart that heard the second part -- “or they could be nothing. “

This was all so big and scary and loud and tender and raw and fragile in my heart I didn’t even know how to be with Ralph. This was my baby, our son, we were talking about. The little guy wiggling all over the monitor that I can feel dancing about in my belly. The gift I SO DESPERATELY hoped for and wouldn’t allow myself to believe we would ever receive -- this angel that is the love between Ralph and me. Finally, the one person that would really care, be really invested in and grateful for and celebrate forever the fact the Ralph and I are in love. Because that love created him. Somehow, I need him to validate the love we share. Love that, if all 9 of our children are being honest, I think they would each prefer we didn’t have. They would rather we be with their other parent or at least alone and totally devoted to them. But John Paul Raphael would be the one who loved us both the same and needed us both and affirmed the value and purpose of our union. His life, somehow, finally, would make us a real family. A marriage can sometimes feel, when you are in your 40s and scarred from divorce and rejection and maybe hardly ever really believed in your own beauty and worthiness, like it isn’t as real as his other marriage because it didn’t bear fruit. But here he is -- our fruit! Our poppy seed, lemon, lime, avocado, banana. Growing away and saying: I AM HERE. I AM YOUR GIFT! I see and know the love of my mommy and daddy in a way that no other person on this earth will ever know.

It shouldn’t matter that anyone else believes in and understands the love that Ralph and I share. It shouldn’t matter if his family still can’t make much space for me because they are all still grieving another woman. It shouldn’t matter that our children will never understand the love we have for each other is greater than the love we shared for their mom and their dad. But this love blossomed into a baby, our son, our child. OUR CHILD! This child that has NOTHING TO DO WITH a first wife or a first husband or our old stories or our past and only validates and affirms our NOW and our future together-- somehow his life is a banner saying: Look! This marriage is REAL, people! This is not a drill. This is not some fling. This is not second best or a consolation prize or someone holding her place until he can return to his real wife in heaven. These are my PARENTS! I want every little thing that every mother in love wanted from her baby. To see her husband’s eyes in this tiny little face. To see her own hair or hands or face on a new tiny body. To see this beautiful blending of two souls and bodies into a new creation and marvel at the mystery and the gift.

Ralph and I walked away from the ultrasound maybe a little stunned and in shock I think now. There was so much anticipation and so much to take in and try to process what it meant, how we felt, what is the impact... We talked to my mom and sent a text to the kids and some close friends. The kids responded very upbeat -- yay, good news, glad things looked good! Mom worried about the stress of being in limbo still as we wait for a fetal echo and another ultrasound in a month... All of this information stayed in me and just settled. I went over every image and every word and as the day went on my heart slowly opened and I began to cry again. Maybe some relief that SEPTEMBER 20TH was passing. Maybe stress that we didn’t really KNOW yet. More likely, it was this tiny soft almost imperceptible voice inside that said: but you do know.

I do?

We said that 95% of these babies show us themselves in some way. John Paul Raphael showed us 5 different signs that are all consistent with Trisomy 18. Yes, they are all small. They are independently not life-threatening or a “big deal”. They could each resolve and not be present on a later ultrasound. But they are here now and together they paint a picture. Of our perfectly imperfect little boy, our John Paul Raphael, who I have to begin to accept and I don’t even want to type it -- that our baby has (may have??? Please??? Might have? A statistical likelihood? Could? Possibly? But not for sure????? Please, God???? Please?????) that our baby


Trisomy 18.

I think I need to begin to accept that John Paul Raphael has Trisomy 18.

How do I begin to accept that and not give up hope? How do I look at the realities of the ultrasound and not still believe in a miracle? Is it a rejection of faith to see the science in front of me or a rejection of reality to only cling to faith and hope? How can I try to prepare for one path while still desperately hoping for and clinging to another? Do they automatically cancel each other out? Jesus, where are you? How do I do this? We prayed so hard and so long and with our hearts pouring tears to you and you already to didn’t answer our prayers the way we wanted before shouldn’t you do it now? Please, my Jesus?

My tears flowed freely that night. This cloak of heavy sadness, like a weighted blanket started to settle in on my shoulders. I felt them sagging and my heart breaking. This numbness seeped over me. I began to sift through the words and do the research and read the stories and search for the one website or testimony or journal that would say -- whoops! No! Those markers don’t REALLY mean he has Trisomy 18-- just read my story and See! But the opposite happened. The more I read and researched the more impossible it seemed that he didn’t.

Ralph always says in medicine that if you hear galloping, think horses not zebras. And here we were clinging to the possibility that it is a zebra, not a horse. YES -- it is possible these are 5 independent markers that are not connected and mean nothing and we have a perfectly healthy baby. But that hope is shrinking and seeping out. I believe in miracles, but that is a different hope than hoping he doesn’t have Trisomy 18 at all. The day was so sad and long and lonely. I felt this surreal disconnect as I read stories and blogs and the experience of others-- some aspects of this are going to be our story. We may have a stillborn son. We may bury a tiny boy. We may have to learn what to do or not when he turns blue and can’t breathe. We have to find the strength to share this whole valley of tears with our 9 other children and our families. (I don’t want to share -- I want to go away with Ralph and John Paul Raphael and handle it all in private and come back when it’s over and we are all neat and tidy and healed again.). I looked at this landscape that Ralph and I would have to learn to navigate and my knees buckled. Hello, grief. Come on in. You can have the room at the foot of the stairs to my heart where you are going to move in until.... Forever?

In addition to that well of grief I have not even begun to explore, one of the first feelings I have with the diagnosis of Trisomy 18 is of failure. And shame. I should have made a perfectly healthy baby and I didn’t. I should have given this to my husband, a gift of love from my body, but I couldn’t. My body betrayed me somehow. I feel shame that all those hopes and dreams and everything this baby meant to me about being married again and bringing our love to life in the world -- so much foolishness. You never deserved that. You were never going to get that anyway. Why would you even hope? Somehow this takes away from our marriage as well -- see? You can’t even have a baby together? You aren’t as real as you thought. Never mind how old and fat and ugly you are anyway. What were you even thinking?????!!!!

Ralph and I are already not on the same page either. He said last night as I wept that he feels like I am burying John Paul and he isn’t even born yet. Yes and no -- I am starting to bury the version of him I think the science is saying we aren’t going to get. The 2 year old running around his train table. The 8 month old nursing to sleep in my arms. The 5 year old going to kindergarten. The 3 year old learning to use the potty. I want that little boy so much, with his floppy brown hair and chocolate brown eyes like his daddy. I love him and had so many dreams and hopes for him already. Maybe HE would be our priest and preside over our 50th wedding anniversary. Maybe HE would recognize the miracle and gift of his dad’s and my love for each other. I know I know I KNOW that he is God’s perfect child however he is, fearfully and wonderfully made, but I get to grieve my own dream. I have to let it go. I have to make the shift from plan A to plan B and that isn’t an easy process. We each lose a little of ourselves in that process, too. Something of us, of my heart, is buried along with that version of what I hoped our baby boy would be.

And I will, I do, embrace and love the little boy he IS with whatever his unique abilities or disabilities are. But this is all so fresh. So new. So painful and sad and hopeful. It is so ALIVE by the very fact that he walks so close to death at the same time. I want to cherish every moment I have with John Paul Raphael safe in my belly while accepting the truth that that may be the only life I get with him. Or they may be more. Only God knows -- His plan, his child his perfect timing.

If I am being perfectly honest, it is all too much. I can’t carry it right now and I am crumbling apart with sadness and grief. I have been longing for WHOLE since I was old enough to realize I didn’t feel that way. The illusion of WHOLE that I had for 15 years that exploded (7 years today. It is a sad anniversary for me, always hard that I remember it alone.) And in the rubble of my first marriage, my need for WHOLE was even bigger. Ralph and I are whole together most of the time, but the broken around is is so close, we get drawn into its current. John Paul Raphael would be our whole. Can he still be? Can he still be our whole if he is perfectly broken and we lose him? Can just a memory of him make us whole or will the loss shatter me even further that I can’t even find myself or the way back to who we were...

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