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   Wednesday, August 17, 2005  

A really long post that should have been written yesterday

I didn't post yesterday, however, it was a significant day.

On July 31, 1977, I was born. I was born exactly on time (if I am not mistaken, I was born on the date my mother was due) and no problems were expected. Now, living in the rural midwest, about 2 hours north of a major city and 2 hours south of another, there were no ultrasounds. My mom had no warning of my diaphragmatic hernia, hypoplastic lung, or missing kidney. She didn't know that I had a muscle development issue and that my left hand was considerably smaller than my right with a malformed thumb looking more like an oddly formed pinkie finger than a thumb.

As soon as I was born, my mother remembers a gasping mewl coming from my mouth and then no more sound. The incompletely formed diaphragm had caused all organs to shift from my abdomen to my chest cavity. She watched from the bed as I turned blue and was rushed from the room. Because she had had an epidural, time was required for it to wear off and she was not allowed to move even when I was rushed by ambulence to the children's hospital 2 hours south of where she lay.

When she was allowed to travel, she went to the hospital to be with me, leaving my four year old brother in the care of relatives -- primarily her parents, but with aunts and uncles during the times my grandparents came to see us all.

Yesterday is significant because it was the day she was finally allowed to bring me home from the hospital. After 14 days in the NICU and two days in a makeshift apartment in the hospital where she was forced to care for me and learn how to meet her own needs while doing so. My mother can remember every detail of August 16, 1977. She knows what was on the radio in the car at every milestone on the trip (for instance, music stopped playing as they reached the state fair grounds and shifted to news of Elvis' death in Memphis, followed by news and tributes to Elvis). She can tell in great detail about the first time my brother saw me that afternoon. She can tell you that even though in the photograph he looks pissed to be holding a little girl baby, he was afraid of me. I wasn't like my male cousin born healthy three months before me. I had bandages wrapping my stomach and bright blue stitches from my ribs to my hip. I was in considerable pain from the surgery and therapy. My mom had to give me pain medication on a regular schedule and perform painful physical therapy that made me cry. My brother did not want to hold me. He was so excited to see me come home and knew that I had been very sick and was still very fragile. He was afraid to play with me, afraid that he would break me and I would have to go back to the hospital. But, just as my parents had to learn to live while caring for me, they felt it was important that my brother learn to hold me, to view my condition as normal life.

And, gradually, as the therapy progressed and my left arm began to move from my right shoulder and my head no longer lay against my shoulder, as the stitches healed and were removed, as I was weaned from the pain medications, it became increasingly obvious that I had beaten the odds. I was one of two babies to survive with diaphragmatic hernia that year. But I did more than that; my one normal lung began to function within the normal range for people with both lungs; my one kidney functioned as well as the normal two; my atrial-septal defect closed and the heart murmur became very slight, eliminating the projected need for open heart surgery. I began to function as though I were "normal." And my brother became less afraid.

Perhaps the only thing that happened as a result of all of it is my parents' divorce. Even that I can't be certain was my fault. He had been abusive for years. After I was born, he began dating a 17 year old high school senior and left my mother. Several years later, he married the high school girl. While there are other indicators that they were headed for divorce, I do feel that my health was a major push. My dad simply did not have the ability to deal with that kind of responsibility. My doctors had said that my congenital issues were likely the result of some form of trauma that my mother suffered during pregnancy. The only trauma had been at the hands of my father.

The one constant in my life has always been my mother and the knowledge of her capability to care for me through anything. She has always been the one that I depend on above all else. For that, I am grateful. And I know that I will never be able to show her how truly appreciative I am for all that she did for me and all that she continues to do.

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  Comments about my post, "A really long post that should have been written yesterday":
I'm weeping.
What survivor's you three are.
May we all be that brave, strong and true. Thanks.

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