Butterfly Child

By Silvia Corradin

Butterfly Child is the story of a mother’s journey through grief and incredible challenges. From the stillbirth at full term of her first baby, followed by a miscarriage, to the birth of her son Nicky, diagnosed with Recessive Dystrophic Epidermolysis Bullosa, a rare skin blistering disorder that requires extensive wound care and is considered life threatening. Challenges include Insurance Companies refusal to cover the most basic needs for any EB patient to Silvia’s trying to make sense of her situation, from a divorce to a remarriage and another scary pregnancy. Her youngest son, Connor, is 100% healthy and she never, ever, takes it for granted.

• Language: English
• Publisher: Lulu.com
• Release date: Mar 23, 2015
• ISBN: 9781329002838

Book preview

Butterfly Child

Butterfly Child

A Mother’s Journey

Description: MC900437946[1]

By

Silvia Corradin

© 2015 by Silvia Corradin ~ All rights reserved.

Copyright © 2015 by Silvia Corradin

All rights reserved. This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review or scholarly journal.

First Printing: 2015

ISBN: 978-1-329-00283-8

Silvia Corradin

Lancaster, CA 93535

www.butterflychildamothersjourney.com

Dedication

I dedicate this book to everyone whose life has been touched by Epidermolysis Bullosa and to all the incredible friends and family who helped me along the way; you know who you are! I also want to send a big Thank You to Nick for being such a great dad.

To my beautiful children, in heaven and on earth, to my amazingly supportive husband and to my loving family in Italy: I love you.

In Memory Of

Description: C:\Users\Silvia\AppData\Local\Microsoft\Windows\Temporary Internet Files\Content.IE5\XA5EE7G1\MC900412470[1].wmf

Alexander Luciano Zahorcak

Stillborn March 1, 1995

Emily Hope Zahorcak

Miscarried October 12, 1995

Francesca Corradin

Stillborn about 1946~1947

Rina Busa Corradin

August 16, 1903~ June 19, 2005

Joan Delores Anderson Lawniczak

September 1, 1936~ October 20, 2009

Introduction

Turn your wounds into wisdom.

- Oprah Winfrey

Nicky’s first picture on his Birth Day, November 25th, 1996

Epidermolysis Bullosa, EB. The words themselves appear intimidating. How do you spell them? How do you pronounce them? I never before heard these words, nor had any knowledge this disorder existed until my son Nicholas was diagnosed with it about twelve hours after his birth on November 25th, 1996. A month later his official diagnosis came back as a classic case of a form of EB called Recessive Dystrophic. It took another seventeen years for us to get an actual subtype, which turned out to be the Hallopeau Siemens, or Severe Generalized as it’s now called.

       While it was a devastating diagnose, at the time I was just happy to have a infant to hold, love and care for, as a mere twenty-one months earlier, I had a baby that was stillborn at full term, Alex, and EB was now given to me as most likely the cause for his demise. Losing a baby at birth, followed by a miscarriage and now having an infant with this horrible disorder had a deep effect on me and over the years I had a hard time explaining to friends and family what I was going through and that I was not exaggerating. There is no exaggerating the devastation of EB.

     For me, when I think of myself before Nicky and Alex came along, and myself today, I am without a doubt a little softer, a little kinder. I would hope to be an improved person for the baggage I must carry through life. Illness instructs.

     The book starts on the day Nicky’s big brother Alex died in my womb, twenty-four hours before he was due. I chose to start the book this way because I felt that this day marked the end of my innocence. In a way, my life can be divided into two parts, before Alex and after Alex, or, rather, before EB and after EB. While Alex was never officially diagnosed with EB, most Doctors who viewed his photographs have surmised that he indeed had the condition, which most likely caused his demise. While I do have flashbacks on occasion about my life before the end of my innocence, the book is in essence about my son and the journey and challenges in my life that led me to perhaps view life and do things in a different way. Maybe my naiveté is gone, but other traits have taken its place. I am more forgiving and understanding, more tolerant, more patient, and even more creative.

     I wrote this book in essence to inspire and educate others about life with EB, the rarity of the condition meant descriptions were often difficult but necessary, and it’s an extension of what I have done since Nicky was born: explaining Epidermolysis Bullosa to others. I felt the need to share not only everything I experienced about the injustices dealt to those born with distinctive challenges, but also the intense love my son has taught me.

     We all are in need to know that there are those out there whose personal bravery in the face of unbearable odds inspires us to do something we thought we could never do. I also know that the whole world is hurting, and we want to know that we are not alone. When we hear of other people’s struggles, sometimes we reevaluate our own lives and appreciate what we have. True happiness comes not from having a perfect life, but simply wanting what you have.

     My hope is that this book might help one person in some way, make someone smile, give someone hope, perhaps help the world know about EB, but even if it does not, writing everything down, putting everything in prospective, might save me. And that’s no easy task.

     Nicky’s health has had its ups and downs over the years, sometimes his lesions accounted to only 30% of his body, other times much more. These are second-degree burn-like wounds that are deep and take anywhere from a week to months and even years to heal, and a few never do. His body needs to be covered in bandages to protect his healthy skin and allow his wounds to heal properly. Because his feet are so fragile, Nicky does not walk and needs a wheelchair; he uses a power chair to ease his walking when he goes to school, outings or camp.

       Nicky also has a g-tube that supplies nutrition to him, as his mouth has been too sore to eat anything that needs to be chewed or has a harsh texture. His tongue is fused to the bottom of his mouth and he has no gum space, as that’s all fused together. Nicky has had many throat dilatations, a few hand surgeries, countless blood/iron transfusions and too many other problems to list. Skin is, after all, the largest organ we have, and it affects everything.

       Despite it all, Nicky is my light and inspiration. He can be crying and upset about a wound one moment, and light up a room the next. We have so much fun together, he can be so charming, so witty, he’s my little comedian, and while life has dealt him a major blow one can’t help but know he has a happy heart.

     Having a child who is sick is a full-time job. We fight EB every day, not only literally, but also psychologically.  There is no time to wonder Why me? all we can do is Hope, it may be a false hope, but if hope is what makes us fall asleep at night, it has done its job.

     I turned fifty recently. I am a mother, a daughter, a sister, a wife, and a writer. I was born and grew up in Italy and left home at seventeen with bold and extravagant plans, many of which never came true. While I still look ahead rather than behind, I wear a bracelet full of memory charms of which I want to keep adding to. My biggest charm would be the one to symbolize a cure for EB.

A Word of Thanks

This book would not have been possible without the help and inspiration of some wonderful people.

To my sweet baby Alex, whose short and beautiful life redirected mine in all superior ways. Mommy will always love you.

Nicky & Connor, not a day goes by that I don’t thank God for allowing me to have you in my life.  Each of you, with your own ways, your own might, fills me up with pride. Sharing the journeys of your lives is my greatest pleasure. Nicky, you have taught me immense lessons. You’re the bravest boy I know. Connor, thank you for always making time and helping your big brother; the joy of watching my boys cuddle when you were little is forever etched in my heart.

Greg, thank you for all your love and support and for putting up with me! I would have been forever lost without your constant attendance, vigilance, and love. I know that having Nicky as a stepson was challenging and it also required sacrifice on your part to permit me to have a friendship with his father. Thank you for being not only my husband but also my best friend.

Nick, thank you for loving your son as all fathers should and for being so generous with him; I appreciate and am grateful for our friendship and for your help in taking care of our son.

Katia & Lorena, thank you for being such amazing sisters; I am amazed by your mind, your heart, and your spirit. Thank you for my beautiful nephew and nieces. Vi voglio bene!

My mom and dad, Thank You for giving me solid emotional sustenance all my life even while living on the other side of the globe, and for being sensitive and compassionate as parents can be during the tough times of my life, even as you, too, suffered. Daddy dear, I absolutely adore you! Mamma, I love your eyes, your hands, your smell, your vision and your heart.

A special thank you to my dear sweet mother-in-law Joan Lawniczak, who, during our very first phone call after I started dating her son her first question to me was to tell her all about Alex. That meant more to me than any gold. We love you and miss you.

To everyone that made a difference in our lives, you know who you are and you know what you did, a huge Thank you from the depths of our souls.

Many Blessings

Silvia Corradin

March 23, 2015

Chapter 1

Losing Alex

When we long for life without difficulties, remind us that oaks grow strong in contrary winds, and diamonds are made under pressure.

- Peter Marshall

Description: IMG_0031_forbook.jpg

9 Months Pregnant next to Alex’s Crib

Saturday, February 25th, 1995 was just another sunny day in always warm Arizona, and I was doing what any other pregnant mom would do trying to stay cool, strolling the Mall with my mom and my best friend Kelly, eating ice cream. Being nine months pregnant and due the next day, all I felt was excitement and anticipation. We would soon meet the little guy we had been preparing for and longed of for years.

I had been on maternity leave for about three weeks, and every day prior to my mom arriving from Italy the previous Tuesday, I kept busy cleaning and organizing. On TV and on the radio Take a Bow from Madonna was playing excessively, it became my soundtrack while I was preparing our house for our precious little boy. I knew that I should have also spent my time looking for a pediatrician and a baby-sitter for when I would have to go back to work in mid-April, but it felt strange to do that for some reason. I had always been a little psychic, if something was not meant to be, such as if I was supposed to go somewhere and it didn’t feel right, sure enough something would always happen to prevent me from going. Could this be one of these times? I tried to push these strange feelings out of my mind-I told myself I would find a Pediatrician and Sitter later, when it felt right; I was at the end of the race, near the finish line, nothing can go wrong now!

     The state of first-time motherhood was blissful and exciting, but on this fateful Saturday I felt odd and noticed that the baby did not move, as he always did when I ate or drank cold things. That was the end of it, however, my glow could not be dampened by any ill thought; I was in complete denial that anything could go wrong. Later that day, however, while trying to go to sleep I did become aware that the baby was not moving at all. I used to have to count kicks at night for many weeks in a row, so it was something I always could expect and count on, but not that evening. Come to think of it I did not remember him move at all that day. Then I felt something... which was enough to reassure me that it was the calm before the storm. I was due the next day after all.

     Sunday, my due date, came and went. I kept busy, I took my mom to the store and all I remember was that he weighed on me; I kept feeling for him to move, but nothing. What further worried me that day is that I had always been so hungry throughout the whole pregnancy, but on this day, when we went out for pizza, I could not eat more than a couple of slices. It was a very weary feeling, I felt as if I was no longer pregnant, no symptoms, no nothing. I expressed my concerns to my mom, but she said that babies just don’t move much at the very end because there is no room. True, the baby was large and the elbowroom gone. I kept reassuring myself that there was nothing to fear. I talked to Nick about it and promised him I would call the Doctor’s Office in the morning just to be on the safe side.

     Monday morning first thing I was on the phone with the Doctor’s office. The Nurse told me: Yes, babies don’t move much at the very end, but, if it’ll make you feel better, why don’t you come in and listen to the heartbeat? Her attitude of nonchalance on the phone, treating me like I was a worried-for-nothing mom made me stop worrying completely. Yes, that morning I was wondering why I could not feel the baby move, but I brushed my fears aside. I took my time to get ready, so long in fact that we were still home when the Nurse called us back wondering if we were coming in.

I will never forget what the Doctor said while she placed the Doppler on my stomach: Common Kido, don’t worry your mom! Both the Nurse and my mom were talking to me; actually I was translating back and forth with my mom, who came from Italy to be there for me, while the Doctor must have searched for that heartbeat for a few minutes. I noticed that she had a hard time finding it, but I refused to believe there was anything wrong. She then asked the Nurse to bring in the ultrasound machine; at that point we were all staring at a baby that wasn’t moving, with no heartbeat to be seen. My mind kept racing... I am sure there is an explanation for this, as my heart, simultaneously, was breaking into a million pieces.

     After a period of silence the Doctor finally said: I am afraid I don’t have very good news. She went around and around showing me where the baby’s heart was, and there was no mistake, it wasn’t beating. I felt woozy and sank back into the bed, my stomach still exposed and sticky from the ultrasound fluid. My poor mom could not believe it; I was in complete and utter shock. How could this happen? What could possibly cause a baby to die at full term? I never heard of this happening. The Doctor could not give me any answers; she said we would have to wait to see the baby before a reason could be determined. The Nurse escorted my mother and I to the perinatal office where they had more sophisticated Ultrasound machines to confirm what they called fetal demise—how I hated that word. Alex was full term; he was far from a fetus.

     I remember needing to lean on someone to walk, feeling as if the ground was wobbly, or I was out of my body, like I was living someone else’s tragedy. I did not know what to think, what to say or what to do, I was disoriented, numb. I could not even cry. As we entered the elevator my mom, who was in disbelief just could not comprehend it. I never went to the Doctor for all three of my pregnancies and all three of my girls were born just fine, and you go to the Doctor every week and this happens! I wasn’t sure how to respond to that. I never even knew she never went to the Doctor when she was pregnant. I was too perplexed to formulate a response anyway.

     With my mom and a Nurse’s help I arrived at the perinatal office. I climbed into the bed with their help. A young woman walked in and slid the stethoscope over my stomach. I could not see the monitor and she was silent. She looked and looked for what seemed like forever and uttered no words. By now I felt cold in every sense of the word. Physically I felt fine, I never stopped feeling fine. I never smoked or took illegal drugs during my lifetime. I hadn’t touched alcohol my entire pregnancy. What was happening? Finally she left the room and told us she was calling the Doctor. Mom and I were silent in the room. I could not speak. Mentally I was a wreck, as if someone just punched my psyche. After a very long time the Doctor came in and told us he was sorry but it was evident there was no heartbeat. He never used the word ‘died’; I had to pry it out of him. You mean to tell me my baby is dead? He lowered his head and replied… Yes. How is this possible? He didn’t know. He felt it was probably a cord accident, and relayed how it happens sometimes, but a real cause could only be determined once they saw the baby.

     From that dreadful place they sent me home to talk to my husband, and to decide what to do next; while walking back to the car I told my mom that we were going to try again soon.

I honestly cannot imagine thinking that at that point in time. All I know is that at that moment I felt robbed and desperate, and perhaps it was my way of throwing my towline, a way of trusting in a future instead of the horrible place I was in at that instant.

     Nick was at work, so that’s where we went. I am not sure how I drove there. We waited for him at the receptionist desk; I had no idea what I was going to say to break the news. When I saw him coming down the corridor, he had a big, big smile on his face, he thought we came to visit him to go to lunch together, but his expression turned quickly once he saw my face. He was worried instantly. What’s wrong? Tell me what’s wrong? I rambled something to go outside with me and once there I told him that the Doctors couldn’t find the heartbeat, the baby was dead. What??? Why?? How? Answers I didn’t have; we would have to wait and see.

     This day, Monday, February 27th, 1995, will forever be marked as the worst day of my life; I shed more tears that day than the previous ten years combined. Nick went home with me, and from there we called the Doctor to schedule an induction. I would have to wait that whole day and that following night before I could go in. It was the longest day of my life. I just sat there on the couch, unable to do anything, unable to eat, unable to speak, unable to do anything but cry. I never felt pain like that before in my life, it was the most excruciating anguish that one can imagine. Walking was a chore that day; I had to keep myself from collapsing at every step. It was awful. I am the type of person who loses her appetite when going through any emotional upheaval, and my mother had a hard time getting me to eat anything. She shoved food in front of me and ordered me to eat. I wrote an email to my Prodigy Due February online support group, and that night, when I checked for replies, many moms emailed me back urging me to take at least one roll of film of the baby if not more, as well as giving me their thoughts and prayers. It was the best advice ever.

     My mom started making some phone calls back to Italy. I was comatose on the couch, feeling like I was in a bad dream. I heard her tell my dad the baby died. I could tell it was a distraught call. He offered to tell my sisters and my aunts in Italy. She then called my aunt in New Mexico as well. I think. Well, she must have, since she came to the funeral, I just don’t remember. It’s all a blur. Thinking back, it was such a surreal day; when I wasn’t sitting or crying I slowly paced the house like a zombie, waiting and weeping. I did not watch TV, read or listen to the radio. I was just there, thinking too much. Our old life, the one that included and was planned around the son we were fervently awaiting, was over. Our new life, the one where we had to learn to live without him, had not yet begun. We were in limbo. He was gone but he was with us. Was I still pregnant? I surely looked pregnant, but my baby was no longer alive inside of me, and I carried him inside of me not because of courage or dedication, but because I had to.

When my friend Kelly heard the news, she immediately came over to offer her shoulder. She will never know how much that meant to me.

     Finally, at 8am the next morning the hospital called to say that they could squeeze me in and we prepared to leave. I thought it was fascinating how much I had been worrying about childbirth these past few months, and now, as I was getting ready to leave, I was not worried about it at all. I suppose I was just too heartbroken and filled with grief to worry about physical pain. The emotional pain was just too immense. It still felt like a cruel joke to need to go through the whole labor and delivery on top of the death. As I packed my bag I brought the little outfit I was planning to bring him home with. It was a pure white onsie with a bib that read Hugs and Kisses. Never in my wildest dreams did I think that I would be burying him in it.

     As I was walking toward the hospital entrance, I kept repeating in my head: This is not the way it’s supposed to be. I never imagined that one day I would be headed to the hospital to have a baby on a beautiful morning, and be devastated. This was supposed to be the happiest day of my life; I should have been flying high. My only consolation prize was that in a few hours I would be seeing and holding Alex. A memorial stone caught my eye walking toward the hospital entrance: To our special babies, forever in our hearts, which was a plaque placed there by the hospital’s pregnancy loss group.  I felt so lost, so inadequate; I was unable to make sense of it all. This was, by far, the hardest thing I ever had to do. Knowing I had to give birth to a stillborn baby was not something I had ever pondered, feared, or even worried about; a complete and downright shocking turn of events.

     I cannot truly describe how wonderful the staff was and how concerned everyone seemed to be to make sure everything went as smoothly as possible. This hospital, Desert Samaritan Hospital in Mesa, Arizona, was one of the very few hospitals in the area that held a Pregnancy & Infant Loss Support Group and an annual event called A Walk to Remember, so they had trained Nurses to deal with women coming in with my set of circumstances. They put me in a special delivery room with a rose on the door, signaling to everyone that might come into the room that the mom inside was dealing with a loss. The bassinet in the room felt awkward to me, eerie. I even had a Nurse come in and sit with me at length, conveying to me what it meant to have a stillborn infant, how to memorialize the baby, handing me some reading material, a book written by Sherokee Isle called Empty Arms, and a book called When Hello Means Goodbye which was basically an instruction manual for newly bereaved parents. I was a little taken aback by all of this, you mean… this happens so often that you need a how-to book to hand out? Have mercy! Considering I had never heard of the word stillborn before, let alone known anyone who had one (or so I thought at the time), I felt a little better knowing I was not such a failure. Not much mind you, just a little.

     By definition, a stillborn baby is the death of a baby anytime after twenty-week gestation, but it all depends on the state laws. Before the twenty-week mark, the correct term would be miscarriage. Interestingly enough, a stillbirth is not as unusual and rare as I thought at the time, as statistics show that 100 babies are stillborn every day, which is four times more than babies that die of SIDS, yet this subject goes largely ignored and untalked about. Some call it the conspiracy of silence.

     Ironically, the TV above my bed was showing some type of local news show on a loop, from the latest testimonies of the OJ Simpson’s civil trial to the most recent automobile accident; part of which, however, played music videos, and one of them happened to be Eric Clapton’s Tears in Heaven. It was in fact about a year earlier that I had heard the song on the radio on my way to work and when the host of the radio show explained what it was about, which is Clapton’s memorial song he wrote about the pain and loss he felt following the death of his four-year-old son, Conor, I remember thinking how devastating it would be to lose a child. Now I knew first hand, and it was vastly worse than I had imagined.  Incidentally, it would not be until more than a decade later, after I had my one and only healthy son Connor that I found out, watching a documentary about Eric Clapton, that the son he lost for which he wrote the song for was named Conor. When the announcer mentioned his name I got a chill up my spine. It seems as if irony in full swing follows me around in life.

     This whole time my fogged mind was unable to comprehend how we were going to get this baby out of me. We suggested a C-section to the Doctor but she didn’t want to scar the uterus, keeping it intact for a future pregnancy. I suppose I had no choice but go through the entire labor. It seemed an unnecessarily brutal situation.

     They started the Pitocin drip around 10am and it took all day until 1am the following morning before I was dilated to 10cm before I could start pushing. That whole darn, awful day was a haze, my body was picked by so many needles, connected to so many monitors and there was a blood pressure machine that would squeeze my arm every few minutes; it left horrid bruises for me to find the next day. The contractions felt really bizarre to me; they were just like a big cramp that would just get worse and worse. By the time I asked for the epidural I was getting cramps in my legs as well, as if in support of the uterus. Fantastic.

When the anesthesiologist came in and started the procedure of putting the needle in my back, he told me to absolutely sit still and how important it was to make sure he did not hit nerves that could paralyze me for life. Oh, great! As the needle was entering my body, a contraction started and my leg started cramping, squeezing my husband’s hand with a deadly grip was the most I could muster to avoid moving. I laughed after it was all said and done. Seriously, at some point you have to have a sense of humor about stuff like this. I was too numb to feel any sort of real anger anyway.

Since this whole process was taking a long time at one point they gave me some medication to relax me, seconds later I could not move. I don’t know what they gave me, but it was weird, I was aware of everything that was going on but could not respond in any way, shape or form, even talking felt like an huge accomplishment. Everyone was laughing at me. It was funny!

     My mom was in the room with us the whole time. She looked worried-here she was, watching me in pain and there was nothing she could do about it. All my life I could never see her cry-if she cried it made me cry-she knew this so she tried to hold it together and be strong for me. What an amazing woman, I am so proud to call her Mom.

     Finally at 1am I started pushing. I would push for 3.5 hours. It was horrible. At first I wasn’t doing it right because I could not feel anything due to the epidural, then when the anesthesia wore off I finally could push and it took forever, I was in so much pain I wanted to die.  All of the pushing, all of that pain and no live baby, still, I could not wait to see him, to kiss him. My mother, my husband and my best friend Kelly were all there to witness the birth. The silence in the delivery room was deafening. You could hear a pin drop. The baby had arrived on Wednesday, March 1st, 1995, 4:29am. Alex was 19.5 in long and weighed 5lb 13oz. The Doctor told me that Alex had most likely lost some weight since his in-utero demise, and that the cord was around his neck, which made it obvious it was a cord accident... well, maybe. There was no certainty in any of this.  I was very upset at how his skin was peeling off so badly anywhere, but nobody gave it a second thought. They told me it was normal.

     Of course this was far from normal. There was no way they could have known about EB back then considering the rarity of the disorder. The only way to diagnose Epidermolysis Bullosa it is through a skin biopsy, and they would need to suspect EB to send it to the correct lab. It would not be until Nicky was born 21 months later that every Doctor imaginable was all of a sudden extremely interested in seeing photos of Alex. Oh yeah the dermatologist that diagnosed Nicky and Doctor McGuire at Stanford said to me unequivocally, Alex for sure had EB. How EB could have caused his demise though is still a mystery. Doctor Marinkovich at Stanford told me that many babies with EB are indeed stillborn, but could not tell me why. At this point however, in the delivery room, we were completely oblivious about EB and would remain so for nearly two years.

     My husband and my friend Kelly took videos and over one hundred photos. I don’t remember most of them being taken; I was too much in shock and in disbelief to think of mementos, even though I was the one to ask them to make sure they did it for me. The time we spent with him was too short in the midst of the shock and trauma of the birth experience to etch his beautiful face in our minds; we needed these photos for later. I was unaware at the time how important these photographs would become, these are the same tangible memories that would become crucial in my grief process. I am ever so grateful these pictures exist; I have made wonderful scrapbooks with them. The video, however, has proven to be extremely painful for me to watch over the years. Still, I am glad I have it and will guard it with my life forever.

     The love that followed the birth of my child exceeded my greatest expectations. It was still a wonder to give birth to him, and when I first saw him I still smiled. What a way to find out what a mother’s love is all about. I just held him in my aching arms and kissed him tenderly. Holding him affirmed his realness to me. He was real. He was beautiful. I felt his presence.  I knew his soul was in the room, somewhere, looking down with love. The Nurse took the time to explain every little detail of his body, making sure I knew he was perfect. He had a cute little upper lip that opened up as if it was waiting to be fed, but the nose was dripping blood. I was overcome with love and helplessness, joy and grief. The potency of my emotions surprised me. For the time I had him near me or in my arms I examined every inch of his body, gently touching him and kissing him. I looked over at my husband while I was holding Alex and he was inconsolable. I watched him break down and sob for our lost baby. I am not sure I ever saw my husband cry before. It devastated me.

     Somehow for those few hours I spent with Alex I couldn’t cry. I was in such an elated state to finally see him, comparing features with ours, and I was so proud. I would have done anything to hear him cry, anything!! I was in this weird state where you want to take it all in, the emotions too intense to cry. Tears would not come until later, and they would flow like a river.

     Something really strange happened while I was holding my baby. All of a sudden I was no longer scared to die; somehow, all those feelings vanished. There was only peace. I will always hold on to those few precious minutes that I got to hold him. They will last with me forever.

Description: IMG_0013b&w.jpg

Holding Alex for my one and only time

     The Nurses were wonderful, they offered to have me clean him, but I was in no state to doing that, so I let the Nurse do it while I held Alex’s hand. After she was done cleaning him she cut a lock of hair for me to keep, put a cute angel diaper on him she dressed him with a onsie and the little booties I had put on Nick’s card when I told him I was pregnant, the very same booties that had hung on my car’s rear-view mirror for the past 8 months. I still have those booties in Alex’s memory box. The Nurse also took some plasters of the baby’s foot and handprints. I later was able to get these bronzed and placed in a plaque. They are very special to me because they are his actual imprints. The front of the plaque has his name and a little bear sleeping, and the back has a memorial plaque with his full name and date of birth/death. 

Once Alex was cleaned and dressed, everyone held him and said their goodbyes, I held him one last time and whispered to him how I would have made such a great mommy for him; as he was taken away, I felt as if part of my soul was gone. The Nurse took him to the NICU to take his official portraits. My friend Kelly helped with those pictures too, making sure they were tasteful and precious. Of all the photographs taken of him, I cherish those the most. The Nurse told me that they would hold them for me until I was ready to see them, whether that would be the next day or the next year. At the time I didn’t think I could look at these pictures for probably weeks, at least. Afterwards he was placed in the morgue awaiting transfer to the funeral home. I will forever be grateful at the staff that allowed me as much time as I needed to be with my son and were so incredibly helpful in describing features to me and more. Amidst all the pain, at least I had that.

     One of Nick’s aunts told us not long thereafter that when she was a Nurse in the 1950s and 1960s, the mother would never see her baby; they would put the infant in a paper sack and she was always in charge of bringing this sack to the morgue on the other side of the hospital. I chill at the thought of that image going through my head as I write this. Apparently health professionals once believed that the most helpful approach to dealing with the grieving mother was to minimize/eliminate the contact, hence the bond. Separate, and break the attachment, basically. Forget as quickly as possible; let’s not prolong the heartbreak. Now we know parents can resolve their sorrow easier when given a chance to connect, hold and convey love for their child. Back then mothers were told to go home and just have another baby, there was no grief counseling, no support groups; hence, as the subsequent children were born into the family, one can’t help but wonder how they might have been the recipients of their parent’s unresolved grief. Without the opportunity to mourn, depression, anger ensues, and existing/future children suffer the consequences.

By this time it was morning; the Nurse helped me get all cleaned and moved me up to a different floor so that I would not be next to a room where new moms were enjoying their new babies. I thought that was considerate. After whatever little sleep I could muster, I was given the opportunity to see him once more, but somehow I could not bring myself to it. I wanted to, but something held me back. When I saw him, he was warm and limp, and I knew that if I were to hold him now he would be cold and stiff… I could not bear having my last memory of him like that. I felt I already said my goodbyes. My mom, my friend Jimmy and Kelly’s mom Dianna did go down to the morgue to hold him and they took pictures too.

     The hospital wanted to know how they should dress Alex for the funeral and I gave them his coming home outfit. They also included a cute little bear for him to hug and a little Sesame Street Blanket. I had two of the same blankets so I wanted to keep one for me. That was also the day the recorder came into my hospital room asking us what name we should put on his Fetal Death Certificate; a little macabre, no? My baby was never a baby; he was a fetus according to them. I never quite got over how a full term infant could be considered a fetus. My sweet little baby never got a birth certificate; he went immediately from my tummy to the morgue. There is certainly something wrong with that. We did have a name, Alexander. We chose Alex several years earlier if we ever had a boy; it felt strange that this how we finally got to use it. Back in the olden days parents simply re-used the name for a live baby, as stillborn babies or babies that died in infancy were sadly a common thing, but I knew that if we gave Alex that name I could not re-use it, and I was at peace with that. I had called him Alex for the entire pregnancy from the moment I found out he was a boy, so it felt natural and right. His middle name was Luciano after my dad. I vowed to use it again, and then I never did.

Sorry dad. I love you.

On this Certificate of Fetal Death they listed the cause of death as cord accident, but even the Doctor was unconvinced. It was all a big mystery.

     I had a long conversation with my mom later on this day about who in the family or my circle of friends had lost a baby at any point in their pregnancy. While I could think of several women that had miscarriages or even late miscarriages, which would fall before the 20th week of pregnancy, I could not think of anyone that had a stillbirth at all until my mom reminded me of Francesca. Yes, Francesca, how could I forget?

It was 1946 or 1947 when my grandma, mom of my dad, found herself pregnant at 43/44 years of age. My dad and his sisters were all teenagers by now and my grandpa was not happy about it at all. Who wants to start from scratch at this point in their life? My grandma though, a star of a woman in any galaxy, pushed forward and was happy with the new addition. In her 8th month of pregnancy she knew something was terribly wrong when she went into labor prematurely after several days of no movement from the baby. When the little girl was delivered, as my dad tells the story since he was there, she was perfectly formed but her skin was really dark, as she had probably been dead for several days. My grandma named her Francesca. The fact that a stillborn baby was named at this point in history is quite profound. If people dismiss and ignore stillborn babies in this day and age, imagine how it was just after World War II? This told me more about my grandma than anything. What a spectacular woman, someone I instantly had an even stronger bond with. A sad bond, but a bond nonetheless.

     I was released from the hospital the following morning, and to go home without a baby, after all of what I had gone through, seemed way too cruel. I purposely told them to avoid any area where they might be moms holding their babies or where I might see balloons or anything else as they wheeled me out of the hospital. I didn’t want to see any of it.

     It seemed strange and disorienting to be home without our baby. Instead of Alex, I had memories: a handprint and footprint, his hospital tags and three rolls of film to be developed. For nearly forty weeks I had planned my life around him. My every waking thought was consumed with the awaiting of his arrival. Now what? Learning how to cope with Alex’s death was only about to start. 

     The first few days at home I felt numb, like a robot, I could not remember anything. I was so confused. I almost felt like an observer, I was dazed, indifferent, and then clear and desperate. I appreciated everyone telling me what to do and my mom cooking for me, I was too pitiful to think for myself. I would wake up in the morning wishing it were all just a bad dream. I would touch my belly hoping to feel the baby there, and that’s when the sadness gripped me. I wanted my stomach back so badly, wanted to have some reminder of the happiness I had, the perfect baby boy I imagined. It was almost as if I had to constantly remind myself of what happened every morning. I could not believe our baby was not here. I needed to hold him; I could not believe he was gone. I would lie in bed not wanting to get up. Why get up? What for? I had to fight my way out of bed every single day, and I will forever be thankful for my mom, who was immediately ready with the cappuccino.

Thank You Mom

Truthfully, my bedroom needed to be cleaned out of all the baby things, the crib, the baby clothes, the diapers, they were just too depressing; the house was also full of flowers from relatives and friends, it was beautiful and painful at the same time. The cards kept pouring in and I was in continuous awe at what people would write. Some people wrote the most wonderful things. I found it quite interesting how the cards felt like oxygen to me, and when I got flowers I sat in amazement. I read and re-read the heartfelt sentiments, they made me cry, but they helped. People will never know how much I cherished each and every word, each and every petal. They helped me get to the next day and helped me regain my strength. I kept them all in Alex’s memory box.

     As mentally I wasn’t in the best of places, my body didn’t let me forget I was supposed to have a baby to nurse. When my milk came in I was in despair, let alone agony.  There is nothing I could do with this milk; there is no baby to feed. I wanted to turn back the hands of time. If there were a definition for a broken heart, it would have my pathetic picture next to it. There was nothing I can do. The Doctor did not want to give me any medications to dry the milk; she insisted I should use a natural method, such as a cabbage leaf in the bra, which sounded crazy. I made a shopping list for my husband and it turned out to be the very first time I laughed since coming home from the hospital. On it was cabbage, laxatives, pads, painkillers, stool softeners and toilet paper. When I handed it to him he went… What? Oh yes, sorry honey!  In the midst of much stress and sorrow, it felt good to giggle for a moment.

My engorging breast seriously hurt though; I ended up putting ice cubes on them because the heat emanating from them was insane, I could have cooked an egg on them. It didn’t help that I was bleeding profusely and I couldn’t sit down because of the episiotomy. I was absolutely miserable. I felt it was yet another slap in the face. There is nothing more pitiful than having to sit on a rubber doughnut so I would not be hurting so much, having to take laxatives and stool softeners because I was unable to push anything out, physically I was a total mess. If I had had a baby in my arms, it would have all been forgotten, but in this state of mind, it just amplified things.

     At the hospital they suggested calling the people who would likely call me asking if the baby was born yet or to call me to congratulate me. Good idea. The last thing I needed right now was people wondering how I was enjoying motherhood and if they could come and see the baby. Kelly graciously offered to make those calls. There was no way I could call. Actually I had to call my boss to tell him, and that was beyond hard. I gave Kelly a list of phone numbers to call, not many, maybe 10 people at most. Kelly then called me when she was done to let me know everyone sent their condolences and they all sent me cards or flowers. I was thankful.

     One thing I was grappling with was guilt. Even though everyone told me it was not my fault, I kept replaying the events in my head leading to the fatidic day, hoping to find a morsel of truth, a hint of what was about to happen.

I remember having a slight cold, which was very mild, but it made me cough really hard a few days before his due date.

I remember him kicking me real hard on Friday night while I was eating dinner, did he strangle himself and die at that moment?  I remember getting Braxton Hicks contractions several days beforehand as well, as if the body knew we had to get this baby out while he was still alive. I awoke in the middle of the night with contractions, feeling strange but excited, and after an hour they stopped. All I could think of was the movement I felt inside of me which made me think everything was okay on my due date, which apparently meant nothing because by then he was irrefutably dead. I tried and tried but I could not put my finger on what I had done wrong. Did I eat something? Not eat something? What was that I did or did not do that could have caused his death? Did I forget to take my prenatal vitamins? Did I pick up something too heavy? Did I accidentally drink something with caffeine in it? I should have known the baby was in distress, I should have known something was wrong. After all, he died inside of me; it had to be my fault! It would take me a long time to accept that things could not be undone, death is permanent and therefore, hindsight is nothing more than an exercise in futility. Not everything is within our control.

In the manual for newly bereaved they stated it was a good idea to send a card to those that were expecting a birth announcement. I was already starting to get phone calls from people asking me if I had the baby and it was hard for me to tell them what happened without bursting into tears so I started screening my calls and sent the following card instead:

We are sad to tell you that our son Alexander Luciano was born and died on March 1st, 1995. This baby meant so much to us and will forever live on our hearts. We hope you will understand and share in our sorrow and loss.

We had to pick out a cemetery plot a couple of days later. It was an awful day. I could barely walk, I was still in a lot of pain and had trouble getting in and out of the car; couple that with all the emotions of having to be at the cemetery and the reasons why we were there and one can just imagine my state of mind. At this point my emotions were a big jumbled mess. I was feeling mourning, anger, shock, guilt, yearning, confusion, isolation, and rejection all at the same time. The way I reacted and lived immediately after Alex’s death was abnormal in any sense imagined. Looking back I realize that my apparently absurd way of coping were necessary for me at the time and allowed me to survive and to climb my mountain of grief. Thank goodness my mom was there to help out, and I will be forever grateful to my friend Kelly, who made all the funeral arrangements, because there is no way in the world I could have handled any of that. No parent should ever have to plan his or her child’s funeral, and I certainly was in no condition to. It was not that I was in denial; it was simply the fact that planning my son’s funeral was not good for me. 

The cemetery had a small section just for babies and the director showed us an empty plot next to the statue of an Angel. I liked that an angel would watch over my baby. Looking around at the other headstones, I observed that some babies only lived a few days or weeks, months at most. Quite a few babies, however, just had one date on them, like Alex. I soaked this scene in and that awful feeling that dread started spreading through my veins again. How can this happen? Why do babies die?

That day we also picked out the stone that would go over the plot and it proved to be extremely difficult. The funeral director showed us different styles and I was in a fog. What am I doing here? What’s happening? and Where is my baby? 

These are all thoughts that kept swirling in my head. That has to be one of the hardest things on the planet, to have to pick out a headstone for your child.  No one should ever, ever have to pick out a headstone for his or her child. To know that his beautiful name would have to be engraved into a headstone was beyond my grasp, utterly devastating. Nick decided he wanted to write: We will always love and remember our little Angel on top of his name; he said that while chocking and tearing up, it was just beautiful. Underneath we wrote his full name, his birth/date date and below it had a baby angel sleeping. It had to be perfect; it would be there forever.

     After we were done at the cemetery, we went to the funeral home. When the funeral director told us that Alex’s body had been transferred there, I broke down and asked if I could see him again before they closed the casket. We were sitting in front of his large mahogany desk and the way he looked at me said it all. He didn’t have to say anything, but he proceeded in telling me that it was probably best that I didn’t; the baby would be stiff and the skin would be very dark, and he went on to say that he felt, as I had felt in the hospital, that my last memory of him should be of him warm and limp in my arms. I knew in my head that that was the best decision, but my heart disagreed. I want my baby! is what I kept saying to myself as he spoke. I became obsessed with those words, as if my heart refused to believe what was so evident in front of me. I wanted my baby, and I would never, ever have him. During that visit he took us to a room full of caskets and urns to pick from. It’s so surreal to walk into a room full of caskets made for children. Could there be a more depressing sight? How can people work here?

I could not bear having Alex cremated, I had even refused the autopsy, and I simply didn’t want anyone to touch him. My baby had suffered enough; I just wanted him to rest in peace. The autopsy, in particular, was very much pushed on me. I suppose some people may think that having something to pin the death on would make it easier to accept, but I am not sure; it wouldn’t change the fact that he died.

There were three kinds of baby caskets, the cheapest looked like a run of the mill box, nothing more, nothing less, and the most expensive one was too over the top and too expensive, so we settled with the middle one, which was actually a nice blue casket with exquisite silk lining inside. I was happy with that.