Complications of a Medically Complicated Child

There is a phenomenon in psychology that states that active observers—people who are involved in an action—have a great need to predict and control a situation. This couldn't hold more true for me, the mother of a child who is “medically complicated.” My 20-month-old son is the actor, and I am the active observer. My son doesn't realize how unusual his life is, but I know that running from a meeting to a hospital appointment one or more times each week is not usual for many parents. I yearn to control this chaotic frenzy, but until Sam's health problems are under control, our lives will not be, either.

“Is life always like this?” our social worker asked us. She had been assigned to us by the state because our son is receiving physical and occupational therapies as part of the early intervention program. Having a social worker is perceived to be “a good thing,” but it is one more appointment I need to arrange in an already crowded schedule. She also suggested we attend a support group for parents of medically complicated children. While a support group may be helpful, I don't really feel that I have the time to attend.

It is assumed that our son Sam has a connective tissue disorder. My husband and I had always thought that there was something not quite right about Sam: He cried a lot during his early months; he made no attempt to move or roll over; and he seemed weak. His thyroid screen was positive, but upon repeating it, it showed normal results. He was born with two large hematomas on his head, but the x-rays indicated that there were no abnormalities present. Sam developed a case of thrush that lasted for 5 months. After a normal immunologic evaluation, it …