Little Boy Blue - Part 2 of 3

Usually the birth of a baby is celebrated. Our son Brenden was so severely disabled, there was no cause for celebration - or so we thought. We didn't realize at the time what a wondrous life we had been charged to care for.

Physically, Brenden had a small and underdeveloped brain, a seizure disorder, dislocated hips and joints, diabetes insipidus (a severe electrolyte imbalance), was prone to pneumonia and other respiratory illnesses, and had trouble swallowing, with the resulting failure to grow and gain weight normally. His odds for survival were poor, even in our medically advanced society. But, had it not been for the quality of medical care he received, he surely would have died far sooner than he did.

Our philosophy was simple - keep Brenden as comfortable and pain-free as possible. We accepted assistance from the medical community to this end, including certain medications. We secured early intervention services, such as physical and occupational therapy. But we decided against what we considered to be extreme medical measures such as feeding tubes and intubation.

During Brenden's life - especially the first year or two - we were told numerous times during his illnesses that "this was it" - he would not survive. His brain simply could not handle basic life functions any more - he would stop eating or breathing, and then die. He was hospitalized with pneumonia many times throughout his life. Before he was diagnosed with diabetes insipidus, he slived for two years without medication. He would even stop eating periodically - as a six-month-old he ceased to eat for five days - yet he survived.

Over time, Brenden began to amaze everyone - family, friends, doctors and therapists. No one could explain his survival despite the tremendous odds against him.

The answer now seems so obvious - but admittedly it took me years to figure out. In fact, two years after Brenden's death, I'm still considering the implications of his tiny, yet powerful life.

Brenden was born with barely enough ability to hang on physically. In addition, his brain was uncluttered with the expectations and complications of life, allowing those of us near him to see as much of the pure essence of a human spirit as is possible - a rare glimpse into what I see as all of humanity's newborn potential.

That essence, or potential, thrives on one thing - love.