Magazine article Policy & Practice

The Most Precious Gift

Magazine article Policy & Practice

The Most Precious Gift

Article excerpt

As we approach the holiday gift giving season, I want to share the story of the most precious gift our family has ever received. On October 16, my stepson, Christopher, was the recipient of a double lung transplant at Baylor Methodist Hospital in Houston, Texas. He is recovering beautifully from the surgery and, while careful monitoring is required, we are very optimistic and hopeful for a bright future.

Christopher is afflicted with cystic fibrosis. As his lung capacity began to diminish and he entered the final stages of the disease, it became evident that an organ transplant was the only option. while we had been preparing for the procedure for several years, the uncertainty of finding a suitable match and Christopher's declining health made this period extremely frightening and stressful. As both a consumer of our health and human services system and a parent,I am sharing some of the thoughts, observations, and lessons learned from the experience because I believe they relate to our work at APHSA.

First, this is a special time to count our blessings. My family feels very fortunate to have the necessary resources to provide for Christopher's needs, to live in an age when medical miracles are more likely to happen, and to have the prayers and support of friends, family, and colleagues. We see firsthand that the system works. From the emergency personnel, social workers, and clinicians to the transplant team and skilled surgeons, the coordination, service delivery, teamwork, and level of care was truly outstanding. For me, this confirms the notion that too often we only hear of the rare failures of our health and human services system while miracles like Christopher's occur routinely without recognition.

Sometimes in the midst of a crisis, one can see things with great clarity--like an accident seeming to unfold in slow motion. When Christopher was at his most critical stage prior to the transplant, I had such an experience. I witnessed something that I instinctively knew--the power and beauty of a mother's love. Over the course of several days, I observed my wife, Jeanette, engage in a tireless bedside vigil, continually whispering encouragement to Christopher, even though medical personnel advised that it was to no avail because he was in a coma. During the critical period when he was being weaned off a respirator, she provided constant coaching with each breath.

I also saw another side. When the hospital was having difficulty obtaining necessary medical records from another facility, Jeanette grabbed her cell phone and left the Intensive Care Unit only long enough to make a quick call. The records were faxed within a matter of minutes. No bureaucracy can withstand the force of a loving mother on a mission.

Throughout his life, Christopher has been truly blessed to have the unconditional love, advocacy, and support of his mother. I believe it has made the critical difference in terms of the longevity and quality of his life. Sadly, it also struck me that there are too many children in this country who are deprived of that resource--someone whom they can rely on to advocate in their best interests. So often it fails upon the human services community to fulfill that role and provide a safety net. …

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