Archive for October, 2009

Fearing the unknown

Wednesday, October 28th, 2009

Three times my size-A Worried Expectant Mother

Early X-rays supposedly showed I was carrying a small baby. I didn’t believe that for a minute. How could this baby be small? I felt huge and ungainly. The baby was so heavy that I felt constant internal pressure. At only five-feet tall, I weighed but 95 pounds before pregnancy. And already I’d gained 25 pounds and seemed three times my size.  Everyone (including me) thought that I looked liked Humpty Dumpty! Just picture this: five-feet tall, wide maternity top, and a large bow tied around my neck. That was the height of maternity fashion then…and almost laughable now.

Understand, techniques like amniocentesis and ultrasounds hadn’t yet been invented. So there was no evidence of anything suspicious, except for how I felt.

Dr. Rogers, after making sure the hospital staff doctors knew everything, had approved a Caesarian section for me. He’d also recognized that spinal anesthesia wouldn’t be effective due to the fusion of my spine. So the delivery was purposely scheduled two weeks before my due date in order to prevent the baby from dropping into the birth canal. That would also prevent the baby from gaining too much weight and getting too large. As a result of Dr. Rogers’ precautions, I’d felt really secure knowing that he was considering all the aspects of my health history for the sake of my safety and the safety of our child.

But now Dr. Rogers’ heart attack had changed everything. Even though his associate, Dr. Bradford, had examined me off and on throughout my prenatal care, we barely knew each other. Imagine my shock when I discovered he had different plans for me. After our first appointment, my heart sank when I realized his ideas differed radically from those of my original physician.

A new reality

Dr. Bradford constructed a whole new scenario for me, one I felt helpless to change. For some reason he believed that I should go through “a test of labor.” Earlier plans and the obvious evidence didn’t convince him that I couldn’t deliver my baby vaginally. What’s more, I was too young and unassertive to challenge him. Further, in the 1950s (and even later) doctors were so revered that their decisions were seldom questioned by laypeople. While Dr. Bradford appeared to be intelligent, his contradiction of the plans by my beloved Dr. Rogers threw me into a near-panic.

With my swollen body and shifted stomach, I became extremely stressed by all that was happening and not happening. I couldn’t change Dr. Bradford’s mind or undo his decisions. So I began to sink into this new reality he’d constructed for me. It was a reality I could scarcely bear but couldn’t avert even as signs mounted that events were going from bad to worse.

With my swollen body and shifted stomach, I became extremely stressed by all that was happening and not happening. I couldn’t change Dr. Bradford’s mind or undo his decisions. So I began to sink into this new reality he’d constructed for me. It was a reality I could scarcely bear but couldn’t avert even as signs mounted that events were going from bad to worse. I was afraid of becoming one of the statistics, being like other moms who gave birth to children with disabilities.

(More to follow from Dana’s Legacy-From Heartbreak to Healing)

The story begins

Wednesday, October 21st, 2009

Watching Our Hopes Go Asunder

T

hings began to go wrong around the end of May, 1956, when I was 20 years old and pregnant with my first child. During the last month of my pregnancy, my body began to swell unnaturally. My stomach became very large and distended, shifting all the way over to the left, making my abdomen appear as if it were lopsided. The swelling in my hands and legs hurt all the time. Something was definitely not right.

I tried not to trouble my husband Don too much, though. He’d just started a new, highly demanding business importing clothing from Japan. The combination of giving birth to a new business and a new baby created more than enough stress for any young couple to handle. And though I was worried, my doctor didn’t seem concerned. In fact, until the last month of my pregnancy, I’d been healthy and full of energy. The days had whirled by, bursting with excitement about the baby.

Then my expectations began to unravel. For starters, my obstetrician—let’s call him Dr. Rogers—suffered a serious heart attack just three weeks before my due date. His associate, Dr. Bradford, took over my case. Although Don and I understood Dr. Bradford had an impeccable reputation, our fears began to grow. After all, I had these strange new symptoms, and the new physician didn’t know my body or me.

By contrast, I’d felt safe and worry free with Dr. Rogers, my original obstetrician. Because he knew my medical history and how it could adversely affect the birth, he left nothing unchecked. As a result of what may been have mild polio as a child, I’d developed severe scoliosis. At 12, I’d undergone spinal-fusion surgery to correct the curvature, but doctors at that time had only achieved a partial correction. My spine was still badly curved, and the combination of the curve and the spinal fusion could threaten both my life and the life of my unborn child. Because he knew all this, Dr. Rogers also knew a natural birth would be problematic.  More to follow next time

What is it about fans?

Wednesday, October 21st, 2009

I thought I would depart from my usual philosophical stuff to share a bit about myself so we can become better acquainted. Along with this departure, I thought I would  let you in on my fascination with people who adore adoring celebrities, politicians, teams, heroes, to name a few. Yes, I’m talking about fans.  I haven’t quite figured them out  yet. Here’s a definition. A Fan- a derivation of the word, fanatic,  has both positive and negative connotations, meaning a champion, devotee, enthusiast, aficionado, but it also means, a junkie,  a nut,  an addict, zealot, cultist, and bigot to name a few. Fan covers an array of situations, but I find it most interesting in Sports. I could talk about politics, but that doesn’t have the appeal for me as much as watching my family root for the University of Southern California football team. Besides, politics would take too much space and I would only offend those who don’t agree with me. I just wanted to comment on my  family’s adoration and commitment to Pete Carroll the coach and to the team. I’m sure that by writing this today, I’m going to wreak havoc from my family, as they think I don’t care one way or another if they win, which couldn’t be further from the truth. Why would I subject myself to going to Columbus, Ohio to watch the USC- Ohio State game or to Indiana to watch the USC-Notre Dame game?? USC has infected the family with the fan flu for over 45 years and it keeps growing into the next generations. I wouldn’t have it any other way. I only wish I understood the stats and all the details about each player,  as they do. I do love the team, but have to admit, I’m not as much an addict/fan as I am a mom who wants to be where my family is as much as I can.

Appreciating Your Child with a Disability

Wednesday, October 7th, 2009

When I was told that I had given birth to our first daughter, I was thrilled. When I was told she had a birth accident and that she was probably going to be severely disabled, I was devastated. It was the worst moment of my life. All I wanted to be was a mother, a good mother. I was 20 years old and barely able to handle any child, let alone a child with a severe disability. The rose colored glasses I wore shattered into thousands of little pieces, leaving me feeling bereft and shocked and beyond belief. My husband and I clearly were not prepared to handle what was to follow over the next several years.

I was a parent who anguished and wished that Dana hadn’t been born disabled. I felt guilty and sorry for me and sorry for Don and me. I was ashamed of the way I felt. I had no idea how to manage or handle her. I worried about her and thought my life and hers was doomed. The future looked so bleak for all of us.

I didn’t know it then, but it was also the moment my real life’s work began.

Many books have been written by parents about their children with disabilities. They write about how to deal with the specifics of managing the impact of their child’s disabilities. I wrote Dana’s Legacy, From Heartbreak to Healing, Strengthening Families of Children with Disabilities with that in mind, but also to help anyone going through difficult challenges. I found that although the traumas vary, the feelings are the same. At first, no one believes they can survive their challenges without becoming permanently damaged by the pain they are experiencing. Initially they feel as though they can’t go on, and it is even more difficult when their child is affected.

There is no doubt that the overwhelming challenges and struggles facing parents of children with disabilities create a ripple effect throughout the entire family from the grandparents down to the siblings and the child. Everything seems to spill out and over everyone and yet there are surprising stories. Despite marital strife, sibling reactions, negative public attitudes, and more, (you name it) these parents have learned through their own small “failures” and their child’s bigger successes how to appreciate the child within. Over time, disability stops looming larger than their child as their pride and joy grow with even the smallest accomplishment.

One would think that parents might be destroyed just as I thought I would be, in the beginning. It’s true that most feel frightened, lost and helpless as they look to the future. Their path takes them through grief and isolation, but over time they begin to learn to trust themselves and learn what to do. The divorce rate among parents is very high, understandably, but some broken marriages can be saved. By reaching out to other parents, they learn how others manage and cope, mostly to try not to be superhuman, but only human. They learn they are not alone. Someone has been “in their shoes” before them, to help guide them. Yes, we make mistakes and hope to learn from them. In fact, if we pay attention, life can be a good teacher and a good friend. We must learn not to think too far ahead, but rather to consider what is necessary for now. None of us know what the future will bring, and the past is already gone.
When I realized that my worse fears didn’t develop, I realized I had wasted my time fantasizing about “what if”? We must learn to trust ourselves and to develop self-confidence and know-how. Parents are the experts when it comes to their children.

“Dana’s Legacy, From Heartbreak to Healing” tells stories about parents, and describes their struggles with ambivalence, anger, and hopelessness. It also describes their courage and steadfast belief in their children. The disability is always there, but takes second place to that little person inside. The families with whom I’ve worked have taught me volumes about strength and endurance, about hope and dreams, about resiliency and never giving up. These parents are ordinary, yet extraordinary. They just keep going.

My hope is that by distilling some of the lessons I’ve learned, you’ll be able to minimize—but, I’m sure, not eliminate—the grief. And, it’s hoped, you will find, sooner rather than later, the inner strength that will get you through any disheartening experience.

Somehow we manage

Sunday, October 4th, 2009

Once exposed to pain, most of us can find our strength over time, but we seldom realize this initially. In learning to accept what we cannot change—for instance, the child with the disability who can’t be fixed—we ultimately must face ourselves. The healing comes from accepting this truth and the grief and misery that accompany it. Eventually, we accept the reality that we can’t control everything that happens. And with that acceptance comes a discovery: Not only are we not destroyed, but, in fact, we’re stronger.

No one passes through life without trauma or anguish. Turmoil is inescapable. And whether the crisis is loss of loved ones, ill health of family members, divorce or financial difficulties, the reactions are pretty similar: feelings of isolation, helplessness and depression. Yet we all have different styles of dealing with such trauma. Some take action to do something, anything, to keep feelings at bay. Others shut down, too petrified to move in any direction. Many come through their experiences wiser; others lose their way and become bitter.

The families with whom I’ve worked have taught me volumes about strength and endurance, about hope and dreams, about resiliency and never giving up. My hope is that by distilling some of the lessons I’ve learned, you’ll be able to minimize—but, I’m sure, not eliminate—the grief. And, it’s hoped,  you will find, sooner rather than later, the inner strength that will get you through any appalling experience.