Unconditional Love of a Child With Severe Disabilities

This is a story about love. It is also a story about community. And, for some, it will be perceived as a story about taking the reverence for life beyond reasonable limits.

A child became profoundly disabled in a terrible mishap and now, having suffered a catastrophic brain injury, requires full-time high tech medical support and full time care. And despite the urgings of some to "let him go," he remains a loved and cherished member of his family. But trouble is brewing. From the story:

[Val} Decker says, this little boy is loved just the same, despite critics who say there is no child, no life there, worth preserving. "People think this mom is crazy," she says as she sits in the living room of their home near Anne Sullivan Elementary in Sioux Falls. " 'She needs to turn off the ventilator and let him go,' they say. "But Landon is not brain dead; he's brain damaged. There's something still within this person. And it's not within my power to take it away." [snip]

Decker's husband--Landon's father--has left the marriage and the home, giving up many of his rights and decision-making powers concerning his son, Val Decker says. When contacted, he did not want to talk about the situation. Now, Val Decker faces the new year uncertain about the insurance coverage that has helped provide much of the constant nursing care her son needs. She is unsure there will be money to make mortgage payments on their house. A nurse by profession, she is looking for work so she can pay the bills. But it's been a struggle to find a job that will allow her to leave when the ventilator-trained nurses she has hired to care for her son are unavailable, she says.

So friends have started a benefit fund at Wells Fargo Bank branches to raise money to help her keep a roof over her family's heads.

Some consider costs of care to be an issue:

The more pertinent discussion here, the doctor says, involves questions that little boys such as Landon "make all of us ask."

"Questions like, 'What is reality?' " Kidman says. "What really matters?' And 'What is love?' "

The reality of Landon Decker's situation is that the cost of his care, through Medicaid and insurance, is expensive. Paying for a ventilator and monitors and 24-hour-a-day nursing care adds up. In a country with finite resources available for situations such as Landon's, "I can understand that side of the discussion," Kidman says. "So the question then is, 'What type of life is worth pouring resources into?' " he says. "We tend to put more on the humanity side than the financial side of that discussion. "I can tell you that the people who interact with Landon and his family seem to be softer in their hearts. They seem to have gained something from being involved in Landon's life and are better for it."

It's a long piece and worth the read. But what struck me powerfully when reading the story is that very few would judge a parent who made a contrary decision in such a case and decided to remove the respirator and allow nature to take its course. But time and again, we see people who love their children come what may--Terri Schiavo's parents come to mind--criticized and pilloried for refusing to let go.

Such are the times in which we live, I guess. But we should also not forget the witness of people like Val Decker and those who help support her, who by their radical self giving illustrate the power, depth, and strength that comes from unconditional love.

HT: Aaron Levisay