When our son came to us with medical conditions which will affect him (and us) for the rest of his life, I received two very helpful insights from others who have blazed a trail ahead of us. The first came from a close friend who had a disabled son several years older than our child. He told me, "Don't set yourself up with the expectation that a day will come when problems will all be behind you and life will finally plateau. Just when you get one problem resolved, a new one will be lurking around the corner." I received this as wise counsel. It has helped us face each new challenge. And as my friend predicted, there are always new unpredictable challenges.
The second insight came from a teenage member of an e-mail support group. She said, "I confess that I don't really know much about Spina bifida. I know that I have it, and I know how it affects my daily life, but I don't know what it is. And I don't really know my own medical history. My parents have always taken care of that for me." Taking a cue from this teenager, we began keeping a journal of our son's medical events, each hospitalization, each test, each procedure, and each development in his condition. My initial motive was to provide him with his own medical history. However, this document has become extremely valuable for our hospital and doctor visits, since they also want to know the patient's medical history. As the dates and events blur together in our memory, the printed chronology enables us to provide accurate information.
As this document has grown, we created a summary which lists (1) date of birth, blood type, insurance information, and family contact information, (2) medical conditions (neurological, orthopedic, gastrointestinal, etc.), (3) surgeries, organized by type (neuro, ortho, gastro, etc), (4) most recent tests, (5) names and phone numbers of doctors and hospitals who have treated our son, (6) our pharmacy's phone number, (7) a treatment plan for recurring problems which bring us to the emergency room, and (8) instructions for caregivers. We bring this summary with us to every medical appointment; we print three copies for hospital visits. And we always bring copies with us when we travel. Doctors who don't know Mark appreciate having this medical history in hand and make it part of his working chart.
Life with Mark has been a journey of faith. Not only has he enriched our lives, but he has brought into our lives wonderful people who have helped us on our journey. And we also are enriched as we are able to help others. Once when my wife and I were fretting over a major upcoming surgery, Mark cheerfully corrected us, "God still has a plan for my life!" Now that Mark is older, the adventure before us is discovering the next chapter in that plan.
Mark's dad, Ron