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| My personal experience attending the birth of a child
is considerably limited. I was there for exactly two new memberships
to the human race. Both were due to actions I had taken, both were
planned and everything went as expected. I even received one of each,
which was the desired goal.
No one ever approached me about any irregularities. I never heard the word anomaly. My wife was in and out of the hospital in two days. By the time she was a week old my daughter was eating that rice cereal paste like substance that I thought all babies ate. There weren't a lot of discussions about breast feeding, pumping and things along those lines. Neither child entered the world through an abdominal incision. Sure there was a little yelling, some pain, a couple times I actually felt rather queasy and I think it was pretty hard on the wife too, but nothing out of the ordinary. Nothing to this stuff. How naive and very lucky we were. Soon after, I joined the ranks of the voluntarily ineffective. For the next twenty-four years I went about my life. Since I am the age that offspring begin to have offspring, another opportunity to witness a birth was on the horizon. Well, I would at least be in the waiting room. Close enough for me. My wife's daughter was having her first baby. It was a big secret at first. I guess that sort of thing is normal. Better to give it a few months in case anything goes wrong. After the announcement made her condition public knowledge the real excitement began. Hopes, dreams, plans, baby showers and all those intimate discussions with mom about nursing and other female topics common to an event such as birth. I was amazed at the number of incredibly talented people that could look at a pregnant woman and devine the sex of the child. It was a girl because of this, some just knew it was a boy due to that and so forth. No one actually dimmed the lights, rolled the bones and called on the spirits but they obviously knew more than the average person and certainly more than me. Now and then my own experiences would appear for a rerun in my mind. At those times I concluded the reminiscence with................., nothing to it. Shortly before the long awaited due date it became apparent that the baby had decided to back into this world. Ultimately this decision was countered by the doctor's decision to schedule a C-section and eliminate the opportunity for natural child birth. As a man, I was completely unaware of the importance of natural child birth. While I saw it as merely one of the available options it was evident that the expectant mother felt incredibly cheated by fate. A blotch on the perfect job she intended to complete, this C-section would cause her to miss an important part of the experience. The date was chosen and the time set. Nothing left to chance. We knew when the baby would be born. Whether or not she would be early or late was no longer a question. Apparently no one informed the baby of the schedule. She decided to speed up the process by flipping the contraction switch a little early which immensely affected the schedule. By the time I arrived, her grand entrance was history. Grandma and I stood outside in the cold, straining to see through the window of the nursery. There she was. The first grand daughter and very beautiful as well. The long nine months had passed, the C-section finally accepted and completed. Nothing to it popped into my head yet again........for the last time. Later that day I heard the word anomaly. I have a decent vocabulary but anomaly had avoided my attention. It didn't sound good but it didn't sound all that bad either. Whatever anomaly was sure had the power to create immediate apprehension and down right fear in us all. The baby wasn't allowed out of the nursery. Tension expanded until it seemed the room would burst. Something was wrong. In broken English, one doctor explained that the baby's jaw and tongue were quite small. This made it difficult for her to create an effective sucking motion. She was being fed through a tube inserted in her nose and on to the stomach. They would do a few tests and see what could be done. The mind and imagination can combine to be cruel masters. In the absence of any direct answers they tend to fill in the blanks. Most of the entries are negative. Hope barely holds ground, phrases heard during conversations with doctors are played over and over in an effort to gather clues, searching for anything to shore up the hope and keep fear at bay. During each short visit the mother inspects her child. Questioning this movement or that, asking others if they see it the same. Do the eyes look crossed ? It only seems to happen when she is tired. Is it a problem or not ? I did everything to take care of myself............what's wrong ? Answers appear slowly........minor problems turn into anomalies, anomalies group together to become syndromes. The process takes days. The emotional turmoil is unbearable. Fear, anger, guilt, sadness and disappointment totally eclipse nine months of hopes and dreams. Sleep is a stranger and survival becomes the only goal. With each day comes more information . Fear of tomorrow increases. Anger towards the ineffectiveness of modern medicine is a repeat performer. Endless introspection strives to neutralize the mounting guilt felt by the mother. Slow realization of the situation walks hand in hand with sadness and disappointment. As the mystery unfolds, the words are heard but existence becomes surrealistic. This can't be happening to me ........flashes endlessly on the mind's marquis. After three or four incredibly intense days, three or four breathing cessations and a transfer to a special children's hospital the condition of this beautiful little baby is given an official name. None of us had ever heard the words Moebius Syndrome . At that moment, the relief of knowing the name of the challenge could barely compete with the fear. We knew the name but had little insight into the characteristics or severity. The anguish is indescribable. Tests and theories. The myriad of questions seem to be answered in vague terms using foreign words and phrases. It seemed impossible to leave the presence of a doctor without wondering ,...exactly what did that mean ? Imagination and it's partner would take over at that precise moment to deal the emotions yet another devastating blow. Mothers are an incredibly strong entity. After major surgery, emotional trauma spread over two weeks and severe damage to so many hopes, expectations and dreams, a mother will endure. I saw this mother cry for herself and her baby. I saw this mother demand answers when she was exhausted from surgery and days without rest. I watched her vacillate from adolescence to adulthood searching for inner strength. I witnessed her vigil at the baby's crib in the Intensive Care Unit until she was threatened with being confined to bed for her own health. She accepted her child and constantly asked when could they just go home. I saw her fall apart when she learned the baby would never smile. I gained respect for the strength and support shown by Grandma. She too,..was a mother guarding her baby. They are home. The baby has a surgically installed feeding port through the wall of the stomach. The mother pumps her breasts to get milk for the baby and rarely sleeps as the actually feeding is a slow process. This too is a very important part of motherhood. Some may say that formula would be easier, less time consuming. Some may say it is not necessary to hold the baby while feeding. They don't understand. It is not possible to audit the course when it comes to motherly instinct. Mothers demand the full experience, accept the curriculum no matter how tough and they want the grade. This mother is no exception. There have and will be times when she falls but she fights to the ground. In her weakest moment she harbors great strength. She manages to stand when support is a deserter. The baby has no idea how special she and her mother are. She will learn. All things are possible. Their journey will definitely take a route other than the one mapped during the first nine months. Of course that part is common. The challenges, emotional positioning and development will be intense. Their mutual accomplishments will harvest great personal rewards. They will win. Something else. From this experience, basically in the role of a bystander and support team member, I further understand the need for feeling, understanding and support between us all. There is an analytical answer to every question and situation. Cold and precise, no time wasted. Some experiences such as this birth demand every ounce of feeling, understanding and support available. Just too much of a challenge to analyze it under the rug. Understanding and support equal success. Winning is the ability to share feelings, support and forgiveness. Praise to all those who accept the challenges of Moebius Syndrome and other conditions on a daily basis. |