Our six-year-old son is diagnosed with congenital non-familial dysautonomia. He suffers with seizures, severe GI motility issues, mild cerebral palsy, a sleep disorder, and central apnea. But that is not who he is. Jonny is our cuddle-buggin Walter boy a good 40% of the time. He is our super charged wild child marathon man the other 58% of the time. Then there is the other 2% that is like the boy next door. We don't see him often. That is why I say we are a Dysautonomic family. It is one for all and all for one around here.

     The down times mean Jonny has come to the end of himself and he stops... everything. Eating, drinking, going to the bathroom, breathing (which is never convenient), and even blinking - which we all agree is kinda creepy. It is during these days that we tenderly nurture and carefully guard his sputtering life. His care involves feeding pumps, catheters, oxygen, stethoscopes, suction, and blood pressure cuffs. There is bending and rubbing, wheelchairs and walkers, coaxing and my favorite cuddling to keep warm. We diligently read to his sleeping form because it is something we can do and he might hear us. We take turns keeping him company until he decides to join in again. Three days often pass as we wait.

     Then there is that sweet spot. The hours between his waking and the crisis. It used to be days but now just hours of other families take for granted... normal. It is so fleeting that if you get too busy you would miss it altogether. We have learned to be grateful and content with what we get and in most circumstances. We have also learned not to make plans but just enjoy the moment because this too will end.

     When the moment ends, everyone changes from their slippers to their running shoes. The tell-tale signs appear. A red flushed ear, huge round eyes, the shaky hands, swollen gums, the loud voice. His blood pressure and pulse will shoot up in just hours to the point that he is no longer comfortable in the skin he is in. The marathon is on! As the hours whiz by more symptoms pile up. Vomiting, tremors, and agitation are the bad ones. We have learned some secrets to help make it to the finish line. The first of which is that none of us are truly marathon runners. We have to treat the crisis as though it is a relay race handing off his care after short bursts so we don't all get winded at once. There are comfort measures we treasure too. Like his cozy quilt, and the mailman whom he hunts for his "Nail", the eight-hour video tape that someone diligently edited so no commercials would distract him and then there is good ole Campbell's Soup. It is the only thing he will always eat.

     Jonny's crisis is intense and we try to manage his symptoms with a tangle of 12 medications. They help some-sometimes. Three days pass as we try to keep up...four, five, and then he sleeps. And we break the tape at the finish line together with the help of family and friends and our Ultimate Sustainer who is our reason for running this race well.