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Airing the Family Laundry: Part 1

by: Michelle Andrews

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January 14

“It’s a boy!” the young nurse exclaimed as she laid my beautiful baby upon my chest. After the miracle of birth all over the world, these simple words are words of joy, of happiness, of celebration. In many countries it means that the family can keep the baby and not have to put it up for adoption or worse. In our case, they were powerful words that haunted me and rang in my head over and over again as my child and I began our journey together. It is a journey unique to us. A journey that very few have gone on and very few will have the opportunity to go on. It was very much the start of who made me who I am today. In looking back, it is almost as if my baby was born, and I was “re-born” that day.

My first child, Sam, was just thirteen months old when I gave birth to my second child. I had just graduated college when I got married. As with most 20 somethings, I hadn’t completely figured myself out. My lack of understanding about me was a definite factor in the events that occurred with my marriage after of the birth of my second child. Though I was young, my desire to have children and be a mom strongly drove my decision to wed.

I come from a very Southern and very religious family. In such a family, you are expected to

finish college, get married, and soon thereafter, have children. Any straying from that sequence of events is strongly discouraged and heavily frowned upon. Being the good daughter that I was always

trying to be and being raised in the household that I was, I felt that I could do nothing different. With that said, it was my choice to venture down that aisle knowing it wasn’t everything I wanted. In so many ways it was everything that I didn’t want.

I vividly remember my mom and my sister telling me on my wedding day that it wasn’t too

late to back out. In my mind it was. I was a “pleaser.” For many years I lived my life to please other people, even at the sacrifice of my own happiness. I never wanted to “rock the boat” or upset anyone.

I think it came from living in a house with an older sibling that was out of control. My brother is an

alcoholic. He has self-medicated most of his life to deal with a variety of mental disorders. He was constantly creating chaos in the house, and I just wanted everything to be calm and okay. I would do everything my parents asked or expected of me because I didn’t want them to have to deal with me too. As time has gone by, I can now see that getting married was an extremely selfish act. Ironically,

giving oneself to another in marriage is supposed to be one of the most unselfish acts one can do, but in my case it really was the opposite. Getting married was all about what I wanted and thinking that if

I just did what was expected of me, everyone would be happy. Sadly, I wasn’t in love; I was simply in need.

I desperately wanted the “traditional” life that my parents had. My folks got married

as teenagers and are still together 50 plus years later. They are still very much in love and each compliments the other. They are the perfect role models for marital bliss. Unlike most families, such a long-lasting marriage was the “norm” in my family. Following in my parent’s footsteps, my older sister was the valedictorian and head cheerleader that married the quarterback of the football team. Though it isn’t the marriage I would want, they are still together 29 years later. As many people feel in their formative years, I didn’t want to be “different.” At the beginning of my eighth month of my pregnancy, my obstetrician died of a massive heart attack. I will never forget the day I found out. I was a special education high school teacher at the time.

I called to make an appointment for a regular check-up and when his receptionist answered, she said “I am sorry, but Dr. Hopper died of a heart attack last night.” I was in shock. All I could respond was “You’re kidding, right?” She simply said, “No ma’am, I am not.”

I

felt a chill go through me at that moment that now I know was a foreshadowing of what was

to come. Dr. Hopper was an older man. I would imagine he was probably in his early seventies, and in the course of his career he had delivered over 10,000 babies. His approach was soothing, and I felt

comfortable and confident with his care. He had his own practice, and his staff referred to you by name.

I knew that when I went into labor, he would be the one there with me. During my first delivery he sat on the bed, talking to me and making jokes to keep us all calm. His favorite joke related to delivery was, “What did the monkey say after he got his tail caught in the lawn mower?” He would wait for my reply, then chuckle “It won’t be long now!” He loved what he did, and he loved his patients. With him, I knew everything would be okay.

I scrambled to find another doctor. I ended up at a large ob/gyn practice close to where I lived.

Most of the doctors were young and appeared to be just out of school. Patients flowed in and out of there so quickly and with such volume that I felt as though I was observing a baby delivery factory. Multiple doctors and nurse practioners were constantly scrambling about the hallways. I could not tell one doctor from the next because they were in and out of my room so quickly. No conversation, no personal information, just spread, poke and move on. It concerned me that I didn’t know who would actually be on call when I went into labor, so I had no idea who would deliver my baby. It may even be someone I had never met. My due date was rapidly approaching, so I knew I had to get established somewhere soon. In spite of my reservations, I decided to stay with the practice. Looking back now, I wish I had chosen differently. I know the outcome wouldn’t be any different, but I am sure the experience that we went through would be. The stress of an unhappy marriage, a demanding job, losing my obstetrician and having a little one at home drained me physically, emotionally and spiritually. I was just fumbling through the motions of playing the role a wife, a teacher and a mother. Due to the tension, I went into premature labor several times during my eighth month and had to go on bed rest. My baby was too underdeveloped to allow me to deliver, so with the assistance of drugs the labor was stopped. Four weeks prior to my due date, I went to the doctor for a routine check-up. Upon examination, he informed me that I was already five centimeters dilated. He directed me to go home, but expected me to go into labor sometime in the next 24 hours. Later that evening, we went out to dinner with my parents, and I began to feel contractions.

I headed home to rest, but the contractions got closer together eminently quicker than with my

delivery of Sam. Sam’s dad stayed with him, and I drove myself to the hospital thinking it was probably another “false alarm.” However, due to the intensity and frequency of the contractions, I was quickly admitted. Once in my room, I told the nurse that the contractions were coming on strong. Wrapped up

in her own train of thought, she did not seem to have any concern. I continued to breathe through the contractions, as she occasionally came in and out of my room. I begged that she page the doctor as soon

as possible, but I was again dismissed as though I was being insensible.

time, a young, arrogant doctor strolled into the room still in his street clothes. I was in a state of panic

because I could feel the pressure of the baby and my urge to push was unbearable. Seeing this, he simply patted me on the leg and shrugged his shoulders while telling me not to push. Thankfully, the scrub sink was at the end of the bed because had it not been I am not sure of how the next few minutes would have played out. The doctor was chatting with the nurse as he began to scrub up. I was trying not to push, but the desire to do so was stronger than any craving I had ever experienced. The pressure in my lower back was insufferable. Finally, like water rushing from a dam, I released a scream that I am certain could be heard all over the ward. Alerted, the doctor literally turned around and caught my baby. It was almost as though the child was passed to him like a football. That is when the nurse exclaimed enthusiastically - “It’s a boy.”

After an agonizing period of

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January 14

As quickly as they had placed my baby upon my chest, they took him away. The nurses and doctor gathered around the little table that held him. They were murmuring, and there was an unmistakable feeling of alarm in the room. Occasionally one of them would gaze down at my child, then

over at me with a look of concern. Each seemed to be struggling to make eye contact and hesitant to tell me what the hell was going on. Eventually the doctor walked over to me. His eyes were staring down at the floor. Refusing to look at me he said, “We have made a mistake. You do not actually have a son. Currently, we cannot determine the sex of your child.”

A flood of relief mixed with total confusion washed over me. I was mollified that my child was

not having breathing problems or in some sort of cardiac arrest, while completely baffled that something that I thought was as black and white as my child’s sex could not be figured out. How could the sex not be determined? Either he is a boy or she is a girl. How difficult is that? The doctor brought my baby over and showed me why there was confusion. My baby had what appeared to be selected parts from each the male and female genitalia. The doctor further explained that additional testing would be needed in order to establish which sex my child was. He begrudgingly admitted that he had never seen such a case in his limited experience when I began to ask questions. The hospital did not provide the genetic testing needed, but he could refer us to a facility that did. He couldn’t explain what caused this or why it happened or even if there were other possible related medical issues.

It kept racing through my mind that if Dr. Hopper had been alive, he would have known. He

would have recognized what needed to be done. Surely in all of his years of practice, he would have

seen a similar case or at least provide us some guidance and assurance. We were made to feel that the

we were contagious.

hospital just wanted us out of there

Lying there, I was petrified and felt completely alone. How would the world treat this precious child? In my mind flashed all of the talk shows I had seen on transgendered people and hermaphodites. Remembering how horrible they were treated and how sad they all seemed. Was that what my child was? The doctor kept talking, but I was no longer listening to what he was saying. It was almost as if he were trying to convince himself that he knew what he was talking about. I could tell that the arrogant, young doctor that waltzed into my room a few hours ago had his confidence shaken. The little baby I was holding in my arms taught him a lesson that I hope he didn’t soon forget, and now he was just trying to rationalize what we all just experienced. I needed him to go away. I just wanted a minute alone with my child. I needed to connect, to know that he was okay. Once alone, I peered down into my baby’s eyes. In that moment, I knew that there was an “old soul” in that little body. So tiny, so perfect in so many ways, so knowledgeable about this world, and yet just a couple of hours old. Without a doubt this wasn’t his first time around. Strangely, I also got a very clear sense that I had been brought into this baby’s world, he was not brought into mine. I would find out soon how true that was. As the day wore on, I felt like I was in a fog and completely exhausted from the delivery. Due to the rush of the delivery, my body did not have time to adjust and I tore. My body really hadn’t had much time to recover from Sam’s birth. I just wanted to close my eyes and slip away from all of this for a while, but reality quickly set in. My mind was racing with questions, thoughts and worries. What do I tell his father? He had stayed home with Sam, and I soon found out that he was better at doing

like

that than dealing with all of this. What do I tell friends and family members? What do I name my child? What will be on the birth certificate? Do I call my parents and say “Congratulations, you are the proud grandparents of a hermaphrodite?” I didn’t know what to say or how to respond to questions and there was certainly no one to help me to figure this out. The nurses and care givers would walk in my room and say, “Congrats! What did you have?” A simple question that I know I have asked people many, many times. I simply started replying, “A baby.” People would chuckle at my response thinking I was being clever and then ask if it was a boy or a girl. What should I have said? Many years later I am still not sure of what the best reply was. At times, I was honest and said I wasn’t sure yet that due to a “complication” at birth the sex could not be determined. I quickly found out that people were not comfortable with this approach. When I would start into an explanation, they would look down or change the subject. Other times, I just said that we had a boy. It made things more comfortable for others, but it made me feel like I wasn’t “proud” of my child. For the sake of family members and concern over what others would think, we finally just told everyone that we had a boy, but that we hadn’t figured out a name yet. We didn’t want everyone concerned about the well-being of the child. In hindsight, I wish we had just told everyone what was really going on, but with such exhaustion logic is thrown out the window.

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January 14- January 16

I decided to temporarily name my baby “MJ.”

For a boy, I had wanted Michael Joseph. For a

girl, I had wanted Margaret Grace. So, I thought MJ sort of covered both. MG reminded me of a car, so

that just wouldn’t work. Everyone at the hospital kept insisting on putting a name on all of the paperwork. I don’t know why they couldn’t just write “Baby Andrews” but that didn’t seem to suffice.

After the traditional 48 hours in the hospital, we were released with an appointment with the endocrinologist at a satellite office of the local children’s hospital. Once we were home, MJ’s condition worsened. He was constantly throwing up after eating. I had tried breast feeding in the hospital, but switched to bottle at the recommendation of the doctor. They had thought that the vomiting may have been due to an allergy or lactose intolerance. Over the next couple of days, we went to the ER twice to rehydrate him.

I spent endless hours searching the internet to try to make sense of it all. I eagerly read any bit

of information that could provide some trivial glimpse of insight into what was going on with my child. The rest of my life was on hold. I couldn’t focus on anything else. I was neglecting my son Sam and I completely ignored my spouse. Thankfully my mom had came up to help out. My days were filled with a roller coaster of emotions, while trying to care for a baby that seemed to get sicker by the hour. Looking back at pictures of that time, I can now see how sunken his beautiful eyes were and how ashy his skin was.

I just felt so inadequate. Nothing I did seemed to make him feel better. He was losing weight.

He was pale and lethargic. At birth, he was about seven and a half pounds, and at the last ER visit he was just over five. During our ER trips, no one at the hospital seemed to know what to do except to fill

him with fluids. I still don’t understand why they didn’t admit him for observation.

January 18

Finally the day of the appointment came. I was excited and nervous as we pulled into the office. The endocrinologist, Dr. Aubry, was kind and knowledgeable. Her manner provided me with a little ease for the first time since MJ was born. She spent a long time with MJ, listening to his heart, moving his limbs, and feeling his joints. She respectfully informed us that she needed to remove his diaper for examination. After her exam, she informed me that she thought MJ had congenital adrenal hyperplasia, otherwise known as salt-wasting CAH. As soon as the words left her mouth, I started to cry uncontrollably. Thinking she had upset me, Dr. Aubry patted me on the back telling me that everything was going to be ok and there were treatment options. Through my tears, I tried to explain that it wasn’t the actual diagnosis that I was crying about…it was that it finally had a name. After hours of surfing the net, not sleeping, pacing the floor, praying that MJ would be ok, finally there was a name for what my baby had. With a diagnosis, we weren’t alone. It meant there were other families that had experienced this.

I was completely hysterical. I blubbered to the doctor that I knew that this had to be my fault

and that I was living a lie and this was God’s punishment. After I finally calmed down, she further explained that this was a genetic disorder. It meant that both I and MJ’s father were carriers. It was nothing that I did that caused the disorder and nothing could be done to prevent it. She clarified that we all still needed to have genetic testing and blood work done to confirm the diagnosis, but she was quite

certain of it. Questions started pouring out of me. What does all of this mean? How is it treated? Will he be ok? Can this be cured? Smartly, Dr Aubry didn’t want us to get too far ahead of ourselves before we had all of the pieces. She called and got us into the geneticist and urologist that afternoon and prescribed some medications for MJ to start taking. Fortunately towards the end of the visit, she noticed how lethargic MJ was. She placed a little sensor on his finger and noticed that his blood was deficit in oxygen. Her face clearly illustrated her concern. She said that we needed to get MJ to the hospital immediately. The office was just a satellite, so she called an ambulance to transport us. I couldn’t wait and insisted that we could drive him over quicker. She said that she couldn’t approve that but if it were her child she would do the same. All of the ease that she had provided was immediately erased, and I was filled with panic again.

I frantically drove MJ to the hospital where they were waiting with a gurney for him. He was immediately

swarmed by nurses and doctors. It was torturous watching the staff scramble to try to find a little vein in his arm or leg to insert the IV needle. He was wailing, and I wanted so badly to pick him up and comfort

him and take him away from all of the pain.

I had to repeatedly tell myself that they were trying to help him. Every vein they tried collapsed

because he was so dehydrated. The nurse was frustrated, and I noticed after a couple of failed attempts her hands were trembling. She radioed another nurse who tried a couple of times and then said that the only hope was a vein in MJ’s head. I knew they had to get this IV in him or a more severe method of getting fluids in him would be needed. I collapsed on the end on the bed and as I would do many times over the next several months, I bargained with God to please let this work. I negotiated my life for his.

I promised that I would come clean with the lie I was living if he would just save MJ. I swore to be a

better mother, daughter, anything to help him. Miraculously, on the next attempt the nurse hit the vein. We were moved to the neonatal intensive care unit. The hospital allowed parents to stay with their babies. In one large room, there are six areas set up. There were curtains pulled between each area and a recliner was provided for a parent to sleep in. After twenty or minutes or so, the doctor came in and said that MJ was stable. He said something about needing to stay in the hospital for a couple of

days to monitor him, then we would be transferred to the children’s hospital. He continued to explain things, but all I heard and all I needed to hear was “stable.” With that, I fell into the recliner and soon fell asleep.

I woke up a couple of hours later when I heard a nurse come in to take MJ’s vitals.

After she

left, I wandered down to the restroom and for the first time, began to notice the others in the room. They were all moms. They were all awake…talking soothingly to their child, reading a book, knitting or staring at the TV in the room that had the volume all the way down. It had to be the middle on the night and yet no one was sleeping. I took in the weary, tired looks on their faces. I wondered how long they had been there in the dinky six by eight curtained area. I wondered why their children were in here and how they were coping. I kept my thoughts silent, knowing that we all had the weight of our sick babies on our minds. The night was drawn out and lonely. I desperately wanted to reach out to these people. Though our children may all have different illnesses, the pain of having a sick child created a commonality among us. It constructed a bond between us that only a parent that has experienced it can understand. I had joined a group that no mom ever wants to be a member of.

January 19

The next morning, I noticed a few of the moms were talking around the coffee pot. I walked over and stood by them and made myself a cup of coffee. I heard one of the women say that they were

hopeful that their daughter may be able to go home for a weekend next week. She said that the last time that they got to go home was for Christmas day. It was January, so I thought to myself that it wasn’t that long ago so her child must be getting better. Another mom that was admitted with her child the previous night as well, verbalized the same thought. The woman sadly looked down and said that it was the Christmas over a year ago, not this past one. I could feel my spine freeze. We all teared up as she whispered that this will probably be her daughter’s last visit home. My head began to spin and my heart was entrenched with sadness. I was slammed with the realization that she had spent every day for months with her child in that little curtained area. Day after day, she slept on that recliner and showered in the small bathroom. Day after day, she changed her ten year old’s diapers and brushed her hair and teeth. She lovingly rubbed lotion on her baby’s bed sores and moved her limbs to try to prevent more. Knowing all the while that those days were going to be her daughter’s last days. I gazed at her with such admiration for her strength and her courage. All at one, I knew then that whatever was going on with MJ we could deal with. I was certain that CAH, whatever it brought us, could be dealt with. I couldn’t deal with knowing my child was going to die and nothing could be done about it. Surprising myself, I walked over and hugged her. I don’t know if I needed it or I felt that she did, but that embrace changed my perspective. MJ without a doubt had long road ahead of him. We still had a lot of unknowns, but what I did know is that there was nothing that we couldn’t deal with. I felt certain that MJ was brought into my life for a reason. I wasn’t sure of those reasons just yet, but they would soon begin to reveal themselves.

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January 21 - January 23

The days went by slowly. MJ slept most of the time. His blood pressure was stable, and he was keeping his food down. I cherished his feedings. It was really the only time that I really got to hold him, and it just felt like peaceful. MJ would usually be awake for feedings, so it felt like some sort of assurance that he was getting better on his new medications. Family members came daily to visit us at the hospital, but they couldn’t come in to see MJ. I would have to meet them in the waiting room. My parents were wonderful. They would being me changes of clothes, crossword books, games and food. They would stay at the hospital even when I wasn’t out in the waiting room with them. As they had been my entire life, they were there just in case I needed them. I couldn’t stand being away from MJ for more than a few minutes at a time. I was petrified that some test or event would happen, and I wouldn’t be there. It was so soothing to me to know my parents were just down the hall. I don’t think I could have kept my strength up without them.

I got to know the moms, children, nurses and doctors in the ward. All of the mothers had the

same exhausted daze, and we would simply acknowledge each other with a nod or half-smile as we

walked down the halls. We would watch over each other’s areas when we each took a much needed break to spend time with family or to grab a snack.

I learned that the woman who’s child was going home for the weekend was named Hillary. Her

daughter’s name was Kimberly. Hillary’s stamina and positive attitude continued to astound me. She inspired me daily to maintain a positive outlook. I would watch her read books to Kimberly, bath her, adjust her pillows and attend to her every need. She would pass the other hours knitting and crocheting. She would give the afghans, scarves, sweaters and hats to the nurses and other mothers. She would walk around and cover the other women with her homemade blankets, as they grabbed a few minutes of much needed sleep. When they would awake with the afghan around them, she would tell them to keep it for their baby. One night, I asked Hillary how she kept up her strength, and why she took so much effort to show the staff her appreciation. She said, ““I can’t even begin to tell you how much I think of these people. We have developed relationships with them. They have been there for me to talk to and to cry with and, most of all, they are always there for Kim.” She looked at me and asked me why we were there. I realized that no one else had asked me that the entire time we had been there. I paused for a long time, not really knowing what to say. I didn’t know how to explain it in a way that someone else would understand and not be frightened. However, when I looked in Hillary’s eyes, I knew that I could just talk. I didn’t need to “edit” with her. I took a long, deep breath and explained everything to Hillary. I told her about MJ’s traumatic birth, his weight loss, his medications, and I told her about him being inter-sexed. I told her about my unhappy marriage, and how I didn’t think I could keep this “front” up any longer. I rambled on for at least 20 minutes. I think I was afraid to stop talking out of fear of hearing her response. I was expecting the usual change of topic by whomever I was talking to. When I finally stopped talking, Hillary smiled at me and simply said, “What a gift you have been

given.”

I was baffled. “A gift?” I replied. My child was a gift, but how could CAH be a gift? How could such an unfair “sentence” given to a child be viewed as a gift? Hillary explained. “Most of us have a baby boy or a baby girl. You’ve gotten the gift of both in one little package. You are so afraid of what others will think, but this baby could change how people think. My daughter has taught me that life isn’t black and white. We all get tunnel vision as to what life is supposed to be. My child isn’t supposed to die before me, but she is going to. So, I try to celebrate our

short time together and appreciate what she has taught me about love, patience and strength. Your little one is a teacher too.” I thanked Hillary for her advice, but I wasn’t sure why I couldn’t sleep that night. I stared at little MJ and reflected on what HiIlary had said. I felt myself fighting the message one moment and trying to grasp the beauty of it the next. I couldn’t grasp the enormity of her statement that night, but it stuck with me day after day. I found myself returning to it over and over again.