Saturday, January 31, 2015

Next and More Chapters

After genetic counseling, we decided to have a second child three years after this traumatic birth. We were told we had a 5% change of having another child with a neural tubed defect. I wanted to have a second child, as I did not want Julie growing up as an only child.  We did conceive another child, a girl, and this baby was healthy at 8.5 pounds, born on the expected due date, and with no birth defects.  I was joyous. I was even able to breast feed this child until she was over a year old.

Even though my daughter's father thought he might not be able to continue schooling with a child with special needs, what an irony that he and I both finished our educational goals, and that Julie's various and intensive therapies and hospitalizations made us even more determined to do so. I realized while in my twenties that without a career path, rearing a handicapped child would be a daunting task both emotionally and financially. It took twelve more years, but I did finally finish my formal education. And later, as a single parent of a handicapped child, I was thankful for this endurance to finish school because it did afford me an upper level career in health administration.

In spite of heartache, there have been many positive, bittersweet successes for Julie:
  • Julie has worked for as a receptionist, using public transportation via her wheelchair;
  • Julie completed a college education;
  • Julie has resided independently both as a single and married woman;
  • Julie has maintained an 18 year long, loving marriage to a man having the same handicap of spina bifida;
  • Julie moved across country from her native state, and then she and her husband built their handicap accessible home twelve years ago;
  • Julie and her amazingly resilient husband are members of a strong faith-based Christian community in which they are of spiritual importance;
  • Julie aspired to be a journalist, then subsequently worked for a newspaper, and had several sequential articles published. She currently writes to the editor of her local newspaper, expresses her opinions and has her letters regularly published;
  • Although confined to a wheel chair most of her life, and now being bed-bound, Julie is still a loving, generous, stubborn, sweet person with amazing coping mechanisms

  • She has become the person she is, in part, because of her own will to live and thrive and through caring adults coming into her life by way of a loving family. Also credit excellent medical care, good surrogate fathers, a decent education, mental health assistance, the religious community, paid caregivers, and adult friends. 

    Julie’s father died of cancer before his fortieth birthday. Julie is still living and is now older than her father was when he died of melanoma. 

     Julie's life has played out in far reaching ways that I cannot fathom. But it was the right decision to try and stave off hydrocephalus and systemic infections from an open back in those first hours after her birth. All of the lives she has touched have been significantly, and I believe positively, changed by knowing and caring for Julie. Maybe more than a few will find this story of merit.  

    It is a story of love, perseverance and that each person is important and is a part of the framework behind the doors where we reside.  That one major decision to seek medical intervention for an infant in 1970 has effected many people over the years in myriad ways.  Her life and subsequent death will make a far greater impact on this world than I ever could have imagined in those first hours after her birth.

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