Goodbye, Aidan

Aidan
(at age 4.5, May 2008)

Aidan & his sister Ariana joined us one afternoon for a playdate at OMSI while Jordan was in the hospital with pneumonia in May.

I'm at a loss for words, for once. Our friend Aidan died in his crib on Monday night, and the world has lost one of the best smiles. My heart is broken, especially for his family. His mother has worked tirelessly for 5 years to give him the best the medical & therapy world has to offer, and even today at the memorial she was sharing her plans to continue her work with other children & families that need extra help to care for their special children.

Having a special needs child can take a toll on families (physically, emotionally, & financially), and really drives home the point that "it takes a village." It's not unusual for children with severe disabilities (like Jordan & Aidan) to end up placed in medical foster care or facilities, as these kids often need 24-hour a day care. There's an actual limit to the amount of care one family can provide, because the reality is that we all have to sleep sometime. I know from experience that a person can survive for months, even a couple of years, on virtually no sleep, caring for a child who is sick, delayed, seizing, etc., but eventually your body & mind begin to wear out. And the only way to keep going is to get some help. In our case Jordan qualified for 8-12 hours a day of nursing care (at age 20 months). In Aidan's case he hadn't yet qualified for nursing or respite care in the home, although his mother was fighting the system tooth and nail for this. A night nurse to watch over him in his sleep, or even just a specialized bed, could have prevented this tragedy. But the (very complicated) system was working against Aidan & his family, and this is a price that no family should have to pay. Never again. I'm going to help his mother fight on for the care our special kids, in Aidan's name!