Eden has a book - "Animals Around the World." It opens, "Somewhere in the world it's night. Somewhere else it's day. Animals around the world are waking up to play." To Eden, the book is about ducks, rabbits, hippos, giraffes, pigs, chicks and another handful of animals, and how they spend their days and nights. To me, it's about perspective. As deeply entrenched as we are in the moments of our own lives, somewhere out there, someone else is living in theirs, and the difference may be night and day.
About this time four years ago, a specialist confirmed that Fetus Eden did not have anencephaly, and the sunlight poured into my world, bathing me in its warmth after an emotional winter that had lasted years. And about this same time, also four years ago, on the other side of the country, the Morales family would learn the devastating news that their daughter Angela, due in March 2014, was diagnosed with the same terminal birth defect that had claimed my son's life. Their winter was just beginning.
The diagnosis led Angela's mother, Sonia, to join a support group of families of children diagnosed with anencephaly, to which I continue to belong.
I don't remember much about Sonia from the months leading up to Angela's birth. I wasn't very active in the group at that time, as I was expecting my rainbow baby and felt guilty in my happiness among the grief that permeates our group. Though the members are always happy for each other's rainbows, there's a sadness that always sort of hangs there.
Angela was born March 23, 2014. It was not until Eden was born about 6 weeks later that I really noticed that Angela had already defied the odds significantly. Her parents were reaching out to the community for advice, seeking medical treatment in a world that traditionally resists treating children like ours. Little by little the collective anencephaly community began to realize that Angela was going to be our next star. She was going to be one of those anomolies, one of those rare cases of children diagnosed in utero with anencephaly who was going to live months - maybe years.
After her birth and through the course of her treatment, Angela's diagnosis was converted, as anencephaly no longer seemed to fit. Sonia and the Morales family became targets of harassment, receiving messages from people accusing them of lying about Angela's condition for attention and misleading people into believing that Angela had anencephaly.
Just like any other family in our community, the Morales family was told their daughter wasn't going to live. They were given the option to terminate their pregnancy, to kill their daughter and sister, because she was going to die anyway. Armed with a faith that is unlike any I have ever seen, obedient to God in a way that I could only pray to be, well-versed and strong in their Catholic Faith, the Morales family did not make a choice to continue the pregnancy - They simply followed God's will for them. They only did what was right.
The anencephaly community, as always, came to the defense of our sister in grief. Through Sonia and the Morales family, and above all through Angela, we were living. Angela was "ours." Through Sonia's arms we held our children once again. Through every one of Angela's achievements, our babies accomplished something too. Before our children were born we each had hopes and dreams for them, and all of us had our hopes and dreams crushed. But hope was built anew through a little girl in Rhode Island with thick, dark hair and an infectious smile. The kinds of things people take for granted - sending their children to school - we will never get to do with our babies. It was with beaming pride that we "watched" Angela attend her first day of schoo.
Somewhere in the world it's night. Somewhere else it's day. While Angela flourished on the East Coast I was in California, staring at my rainbow baby wondering why I still felt so sad. Everything I could want, I had, but something was still missing. I was suffering from deep postpartum depression, still suffering from aggravated post traumatic stress. I would look at my newborn daughter and wonder what I ever did to deserve her, when I couldn't save my son. I couldn't understand why I had a right to my next breath, when my son would never breathe again.
"Look at her hair," I would tell my husband, showing him pictures of newborn Angela. "She has twice as much hair as Eden." As Angela's story unfolded for me and the rest of the world, I took comfort in her triumphs. My own friends and family began to follow Angela's story, also seeing Gabriel in Angela.
Through the course of her life, which was much shorter than the average person's, but which was tremendous and practically unheard of among those familiar with anencephaly, Angela experienced periods of illness that had the world waiting with bated breath for the outcome. Would Angela survive this time? Time and again, she did.
Through all of this, Sonia managed to care for her daughter Elizabeth, who had developed a saintly love for her baby sister. Sonia struggled through a subsequent pregnangy while also suffering from hyperemesis gravidum. As she carried her son Alejandro, gravely ill for much of the pregnancy, she also waited each day not knowing if Angela's health would take a turn and if she would be saying goodbye to one child even while saying hello to another, and trusting all the while that whatever happened, it was all part of God's great plan.
During Angela's most recent illness, Sonia made it clear to the world that this time, she wouldn't recover. The world carried Angela and the Morales family in prayer while Sonia, Rony, Elizabeth and Alejandro comforted and loved that precious little girl even as their hearts were breaking.
At approximately 2:45 PM pacific time on saturday December 16, 2017, I laid down to watch a movie and perhaps take a nap while my (now) two beautiful, whole and healthy daughters slept down the hall. While scrolling through Facebook I came across a particularly poignant post from Sonia, a picture of Angela and her Daddy, who was reading to her for the last time. I turned off the movie and put down my phone, and prayed. I never do things like that anymore - I never pray like I should, and most of the time I feel I don't have a prayer left in me. My mind drifted back to that June day in 2011 that I last held my son while he took his last breath. Through Angela and her family, I held him once again. I comforted him once again. I told him I loved him one last time and I gave him over to the only care better than mine. I later learned that shortly after, on the other side of the country, Angela took her last breath on earth, and was welcomed in to Heaven.
Somewhere in the world it's night. Somewhere else it's day. . . .
If you've never been with someone in their hour of dying, you can't imagine what a bittersweet privilege it is. You see, it is our basest human instinct to cling to life. The urge to keep breathing and keep our hearts beating and thereby keep living and loving is what we know. That is why murder, abortion, and suicide are so disordered - It is natural to want to live. Yet, death is natural too. And to be with someone as they are both clinging to life, but ready to die, is beautiful. To be among the last faces someone sees before they see the face of God is an honor. To hold one hand, while God holds the other, is for some parents all we can offer our children, but to that child, it is the world.
The world heaved a collective cry of grief when Sonia announced Angela's passing to the world the following day. I sobbed and choked with tears flowing when I read the news, and ran to my rainbow baby, my Eden, my piece of paradise, and held her close to me. Covered in syrup from her pancake breakfast and surprised by my aggressive show of affection, and alarmed by my fears, she said, "Momma, I'm all sticky." I kissed her forehead and rubbed her beautiful fully formed skull. Her Daddy, my husband, looked on as I set Eden back in her seat and hugged our youngest daughter, Delilah. As I took in the picture I noticed, as I frequently do, the face of the 6 year old little boy that was missing from our table, and the empty chair at the breakfast table somewhere in Rhode Island.
Backing out of my driveway to take the girls to Mass that morning, my heart still heavy with the news, the striking lyrics came from the radio speaker, "Every storm runs out of rain, just like every dark night turns into day."
Somewhere in the world it's night. Somewhere else it's day. There is a time for looking back, and there is a time for looking ahead, and there are times that we just have to live in the moment. For the 3 years, 8 months and 23 days, Angela and the Morales family lived deep in the moment, for one moment later, everything could change. They loved, and they laughed, and they cried, and they suffered. They lived. Life isn't always kind or easy, but it is always a gift. It is always a gift and it should be lived to its fullest.
They have been shining examples of Faith, walking the path that God placed them on in an unconditional display of obedience, prostrate to His Will. Someday, words like "anencephaly," "incompatible with life," "terminal," and "She's gone" will mean nothing. All that will matter are the words we should all long to hear: "Well done, my good and faithful servants." We are in the throes of night - This world, in all its beauty, can still be a dark place, made brighter by the shining stars among us, but still a fallen world. But Somewhere Else, it's Day.