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Emma's HopeA Mother's Journey Through Grief
By Susan Austin Short
iUniverse, Inc.Copyright © 2009 Susan Austin Short
All right reserved.
Chapter OneI wasn't supposed to be perfect. I knew it before my mom and dad did, but this was just the way it was supposed to be. Now that I am home again, I know how hard it was for everyone around me that I wasn't perfect. It wasn't difficult for me in the ways it was for them while I was living. It was just frustrating from time to time.
I knew my mom wanted me to do certain things-like walk or put a square shape into a square hole. Some days I tried so hard, but I just couldn't do it. Some days I really wanted to make her happy and achieve it, but my body wouldn't let me. Other days I didn't feel like trying. I didn't care if I could stand up by myself or point to a bird outside the window.
But maybe it would be best if I started at the beginning.
My mom was at work in Mt. Prospect, a suburb outside of Chicago, when she got the phone call from the doctor's office. She was sixteen weeks pregnant and had recently had a test to determine the likelihood of genetic disorders. Ironically, she really didn't want to take this test, but her doctor at the time encouraged her, saying it usually provided reassurance.
The nurse on the phone said, "The test results came back with an abnormally high risk of Down syndrome. You need to set up an appointment for an amniocentesis."
"What?" she said. "What does this mean? Why do I need an amnio? What can be done about it anyway?" She started to panic immediately. She wasn't sure she wanted an amniocentesis. Mom was asking a lot of questions that the nurse could not or would not answer. She needed to talk to the doctor and to Dad.
My parents decided to make an appointment with the doctor to discuss the potential next steps. Mom was very emotional about this from the beginning. From the first phone call, she knew on some subconscious level that I was not going to be normal. She was terrified.
Dad was the practical and logical one-always has been; still is. He was trying desperately to calm Mom down by being rational. I think he believed that the less emotional he was, the more helpful he would be. The reverse was actually true, but they would discover that later.
Dad would say things like, "We need to get more information about this before we can make any decisions. We need to follow the steps before we can come to any conclusions." He was scared, too: scared of me having problems, but even more scared of Mom losing it. He felt that too much emotion could lead to a breakdown, and then he might lose her to anxiety and depression. This was not the first time he had felt overwhelmed by someone else's emotions. He did not understand how Mom could be so emotional and still cope.
After a lot of discussion, stress, and tears, my parents decided they would have the amniocentesis. If I had Down syndrome, Mom and Dad thought it would be better to know before I was born. That way, they could start dealing with it, become more educated, and try to accept it. They agreed they would not stop me from coming into the world, but they wanted to be prepared for the diagnosis if it was true.
The greatest fear for both of them was that Mom would have a miscarriage, and it would be as a direct result of a test they were only having done because they felt they would handle it better if they knew. This was the primary contributor to the struggle of making the decision. Even though the odds were low (one in two or three hundred, depending on who you asked), there was a possibility. They did not want to jeopardize my life for what, to them, felt like self-serving reasons. Of course, this was not self-serving, but during a time like they were having, the mind does not always think clearly.
So off we went to the hospital for the amnio. First, Mom had the ultrasound and saw me in her uterus. She was in awe. This was the first time she had seen me, or any live being, before birth.
When the doctor came into the room for the amnio, everything changed. I felt and heard Mom's heartbeat get very fast, and I heard her internally saying, "God is with me, God is with me, God is with me." She was trying to stay calm while she was so frightened.
Next, I felt something bumping against the wall. I moved around to touch it, but I couldn't reach it. The doctor was trying to get some fluid from the womb, but the needle did not break through the wall. The doctor tried again. And again. He was unsuccessful.
They were not going to get any answers that day, and Mom and Dad were extremely disappointed. By the time they left the hospital, they both knew they would not be attempting that again. They felt I was indeed a living soul waiting to be born, and nothing was worth the risk of losing me. We had chosen each other for many reasons, and this was one of the reasons we were to spend my brief physical time on earth together. Their journey with my development in utero was the start of our physical lives together.
They know now that the failure of the test was no coincidence. Not knowing my condition actually helped them. They came to a place of feeling hope and having faith no matter what the outcome was going to be. They believed that no matter what tragedy might occur, they would be okay. They realized that, for them, no amount of mental or intellectual preparation would make my potential condition easier to deal with or accept.
The remainder of my time in my mom's womb was pretty chaotic. I could sense she was scared, excited, and insecure about what kind of mom she would be to me and whether I was healthy or not. I heard her singing to me every day when we drove to work and home. It was soothing and calming for her, but also for me. I heard her voice as she talked to Dad, her friends, and her family. Even now, when she talks, I can listen and feel calmed by her.
Now, some of you believe in what I am going to tell you, and some of you won't ever believe it. Others are on the fence and just looking for one more reason, one good last sign that yes, indeed, spirits are with us all the time. When we die, we only leave our physical bodies, and our spirits continue on-learning, growing, and preparing for the next earthly or physical existence.
My mom would never have believed any of this-or rather would not have been looking into any of this-had I continued living in the physical plane. Now that she cannot hug me or physically see me, she knows more than ever that we do live after "death" and that our loved ones continue to be with us after they die, helping us, guiding us, and in some cases, inspiring us.
She still feels like she came to this awareness out of desperation. She needed something, some glimmer of hope that I was not gone forever.
I helped her out along the way too, with some signs of my continued presence in her life. But we'll get to that a little later.
Back to my story.
The time came for me to enter the earthly plane. It was during the night, and after seven or so hours I was born. I had fluid in my lungs, and I needed a lot of medical support immediately following my birth. I required a respirator to breathe. If it had not been for modern medicine, I would have died. Because this was the time frame I had chosen, and the medical support was readily available, I survived those first tenuous hours and days.
While I was being tended to in the intensive care nursery immediately following my birth, Mom and Dad waited for the word from the doctors. They were waiting for the final judgment call. Was this happening because I had Down syndrome?
After what seemed like forever-it was actually approximately three hours-Mom finally asked the nurse, "Could the breathing difficulty be related to Down syndrome?" The nurse hesitated, looked at Mom and Dad, and said, "Yes, it could be."
The air was starting to escape from their balloon of joy. This confirmed Mom's fear, and they both already knew at some deeper level that I had this diagnosis.
Finally the pediatric specialist came in. She told them they would not know for sure until the blood tests came back, but that I did have many of the characteristics of Down syndrome.
All the air was gone. They went from joy and happiness to shock and despair in seconds. Their worst fears had come true. I was handicapped on so many different levels. Why was this happening to them? What did they do to deserve this "punishment"? How on earth were they going to take care of me? Love me? Teach me? What was wrong with them that they made this disabled baby? Were they being punished for their previous failed marriages and other mistakes, big and small, before they married each other? The list went on and on.
Neither of them had led perfect lives. There were things both of them regretted in their past. When they found out I had Down syndrome, they initially saw it as a life sentence-their jail time for all of their wrongdoings. As they looked back over their lives, they felt guilty about some of their choices.
Eventually they would be able to say that these choices, and the consequences that followed, allowed for other positive outcomes and learning. But as with many difficult times, the higher purposes were hard to see in the moment.
Two days after my birth, it was time for Mom to go home. She was still in shock and could not fathom leaving the hospital without me. She was leaving her baby behind, and this was not the way it should be! Would the nurses take good enough care of me? Would I remember her when she left me? Would we have a harder time bonding because she was not with me 24/7? Would I feel abandoned by her because she went home and left me in the ICU? And, of course, there was the biggest fear of all: would I die while she was gone?
Mom knew I was in good hands. Most of the nurses were comforting and very loving with me. Mom could see and feel this when she came to visit. But they weren't Mom, and she felt so helpless leaving me each time after she visited. I was placed back in an incubator with cords and nothing but a blanket for comfort. Mom's gut ached because I was not in a nurturing environment. Was this going to scar me for life? Of course, Mom felt there was no other choice, and she would not do it differently now either, but there is something about seeing your newborn baby in a plastic box surrounded by cords and beeping machines. It is jarring and shocking to one's body, mind, and spirit.
As a matter of fact, Mom did not see how strange and scary it all really was until she was putting me in my crib one afternoon when Dad's mom was visiting the hospital. Grandma Joanie's eyes were so wide, and she looked so scared-like a deer in the headlights. The seriousness of all this really hit home for Mom when she saw Grandma Joanie's expression that day. On some level she already knew it was serious, but on another she had been in survival mode and was living moment to moment.
Because of all the medical support I required, Mom was relieved not to be responsible for all the cords and monitors and making sure my physical status was still okay: specifically, that I had enough oxygen to breathe. She did not have this training and was scared she would make a mistake that would result in my death if my care were left up to her. She felt so grateful and indebted to the nurses and doctors who cared for me. With the exception of one doctor who talked about me like I was a lab specimen, they were all very caring and thoughtful.
Mom and Dad were extremely fearful for the first week of my life and the next few that followed. Every time Mom left me at the hospital, she was afraid when she got home there would be a phone call and someone would tell her I had died. Even though I was not in a life-or-death condition that was where her mind went. She called the ICU several times to check on me when we were not together. The nurses were always gracious, but she did not want to bother them by calling every five minutes. They needed to work and get their jobs done. This was a struggle for Mom, but she needed the reassurance that I was still breathing and slowly and steadily improving. And she also just wanted to feel connected to me when we were not together. It was so hard for Mom and Dad to be separated from me for such long periods of time.
On one visit, there was a nurse who had worked with and seen many babies with Down syndrome. She shared with my mom how strong I was in comparison to many Down syndrome babies. She also said something to my mom about my spirit. How she could sense I had a strong spirit and presence about me. That touched my mom deeply and helped her that day as well as countless others during my life.
As I've shared, Mom and Dad visited me frequently during the week I lived at the hospital. Mom worked with me two to three times a day to try to teach me how to breast-feed. My tongue was reversed which meant that instead of resting on the bottom of my mouth with a natural slight curve upwards, my tongue generally rested at the roof of my mouth with a slight curve downward. I also had low muscle tone, so it was very difficult for me to suck and swallow.
My, how Mom worked at this! You would have thought her own life depended on it. She really wanted to have this connection and relationship with me. In hindsight, she realized that it was also about wanting to have a normal or typical child. I think she believed that if she worked hard enough, it would happen. She tried to do this with me for the next six weeks. She returned to the hospital to work with specialists, using plastic tubing contraptions and anything else imaginable to help me succeed.
Finally, she decided to let go of her dream of breast-feeding me. This would be the first of many dreams of physical accomplishment she would let go of. The letting go did not get any easier, but she finally came close to accepting my entire being as it was. Ironically, this acceptance was finally starting to happen with greater speed right before I died. It's important to note that she never did achieve this fully while I was still physically living. This is perhaps important to those of you wishing that your child was different in some way. We could all use a little nudging when it comes to accepting one another more freely.
I still remember the song Mom would sing to me each night I was in the hospital before she went home for the night. It was called "I Want to Linger Here." It was a song she learned at summer camp. I heard all the love in her voice during those times and I felt so at peace. I felt everything would be okay as long as I was with her.
The words to the song are especially poignant given the rest of my story, so I will share them with you now and then again later:
Mmm. Mmm. I want to linger here. Mmm. Mmm. A little longer. Mmm. Mmm. A little longer here with you.
Mmm. Mmm. It's such a perfect night. Mmm. Mmm. It doesn't seem quite right. Mmm. Mmm. That this should be my last with you.
Mmm. Mmm. And as the years go by. Mmm. Mmm. I'll think of you and sigh. Mmm. Mmm. This is good night and not good-bye.
I chose Mom for several reasons. One reason was her high energy level and another was her deep capacity to love. She cared for me and knew without question that I was worthy of the best in life. It did not matter what problems or disabilities I had; she knew I was worthy of unconditional love. Whether or not she was able to give me that degree of love is another question. She had to first love herself unconditionally before she could love another in this way, and in this respect she was very young. So you can see she had a lot to learn from me too.
Take the pregnancy-she chose to give me life. It was part of her learning and life experience to be faced with this choice. She worked through the options when she found out I was a "high-risk baby." (Whoa-who thought of that label, by the way? Every baby is high risk. Having and being responsible for another living being is a high-risk endeavor.) She knew I might not be perfect, and she had to decide whether or not she would be able to accept imperfection. If she had an imperfect child, it meant that she was not perfect. For someone who had not fully accepted her imperfections before this, my condition was not just about me.
You have to know my mom a little to understand this part. She tends to ... well ... overanalyze things from time to time, and that is putting it nicely. That is just how her mind works. Sometimes this serves her well, and other times it is a nightmare. She had a lot of mental and emotional work to do before I was born, let alone after my birth. This tendency of hers was another reason we were to be together. My life and death taught her many things. Her experiences during this journey would not have been as valuable if she was not so analytical. In this way, her seemingly constant analysis was critical to her evolution. But she also needed to learn when to shut it off.
Excerpted from Emma's Hope by Susan Austin Short Copyright © 2009 by Susan Austin Short. Excerpted by permission.
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