Danny Stanton was born on March 2, 2005. Danny Stanton died on December 12, 2009.
A wonderfully normal two years of growth and development followed his birth as Danny joined his sister Mary Grace and his brother Johnny and took his place as kid number three in the Stanton family. He was, as his grandma Murtaugh dubbed him, the “little toughie” of the family. The kid was a scrapper who held his own as he established his place within his family and, although the youngest child, Danny’s levels of affection, compassion, intelligence, and athleticism evened the score on all fronts as he experienced the day-in and day-out of life’s situations. Even at two years of age, he had established himself –somehow, and in many ways– as an equal not only in terms of experiencing life, but also as one who brought experience to the lives of everyone in his family. Danny was, though, soon enough no longer the youngest Stanton as his brother Tommy came along when Danny was two.
It was at age two when Danny had his first seizure. His eyes rolled back and he shook. We did not know what was happening. We dialed 911 then rushed him to our next-door neighbor, who is a paramedic. Danny seized for almost 10 minutes. On that night, we had a battery of tests done at Children’s Memorial Hospital in Chicago. There was no known reason or cause found for Danny’s seizure. No injury, no trigger. We were told that sometimes seizures in children have no known cause and that kids often outgrow them. The experience was terrifying.
We left the hospital that night sans any written information about seizures or seizure disorders, sans any mention of epilepsy or epilepsy organizations, and sans anything short of the feeling that we had fallen into a hole that had no bottom. Sudden Unexplained Death in Epilepsy, of course, crossed no lips and fell upon no ears. And of course, as well, this made sense to those who made sense of such matters as we –as adults and as parents– were not prepared, in others’ estimations, nor entitled to such privy information. It was just too early. Too early for prevention? Danny began sleeping in bed with us after that first seizure.
Danny had a second seizure while sleeping just over a month later. After this second seizure, he had an MRI. Again, no underlying cause was found for his seizures. Danny was then put on a variety of medicines to control the seizures, and regular electroencephalograms (EEGs) were scheduled and performed. At this time his neurologist determined that Danny had childhood seizure disorder. Still no mention of epilepsy, still no suggestion of outreach to epilepsy organizations, and still, of course, no mention of Sudden Unexplained Death in Epilepsy. What we were told was this: he’ll outgrow it, many kids experience this, we don’t know why it happens, maybe it’s “his normal.” How might life be different had a sophisticated and tough-minded doctor sat us down and said “let me tell you something that will shock you but that I am mandated both by my profession and by my personal sense of duty to inform you of . . . your son is epileptic, and along with this diagnosis comes a plethora of safety issues that you need to become aware of . . . .”
Danny’s day-in and day-out behavior was completely normal. He continued to be athletic, inquisitive, engaging, social, and, more than anything, affectionate. Vacations to the water park, trips to Target, outings to baseball games . . . he was a part of it all. As we continued meeting with Danny’s neurologist for regular check-ups, we became more and more comfortable with the idea that we were doing all we could for Danny and that we were on a clear and well-defined path. We were told that a slightly abnormal EEG might just be Danny’s ‘normal.’
After sleeping with us for a half a year, Danny began to return to his own bed. On hundreds of occasions we left our bed to check on him, and we frequently just brought him back to bed with us. We caught him twice more having a seizure in his sleep. We informed our doctors of every event.
We continued to trust and to believe that we were doing all that we could. We continued, as well, to roll as a six-some through the city of Chicago in our blue minivan, in our strollers and buggies, and on foot. Downtown, the parks, the beach, baseball games, the pool, pizza parties with the neighbors, school plays, kickball in the front yard, catch in the alley, hoops at the Y, around the block on scooters and bikes and Big Wheels, walks to Happy Foods for doughnuts . . . the package was complete. Birthdays, holidays, block parties . . . each month brought more punch to us as a family, and each day brought hugs from Danny: he’d tuck his arms into his own chest and then wait for you to surround his body with yours. He’d then nestle his head under your chin, take a deep breath, and let his exhale say that he had found the spot.
After a year of no known seizures, Danny returned again to his own bed. And then as he turned four (and started pre school) and had gone without a known seizure for 18 months, we thought that our course of action had been successful and that his neurologist was right: Danny would, through medicine and time, outgrow his ‘seizure disorder.’ We were optimistic and giddy. It was like a rebirth for us and for Danny.
On Tuesday, December 8, 2009, we took Danny for a scheduled appointment with his neurologist. That day, Danny had a one-hour EEG done while sleeping. We met with his doctor after the EEG and went over the results. There was still abnormal activity showing up, but maybe a lesser amount than the previous EEG showed? Maybe, we were told. A little progress, we were told. The medicine was working, we were told. We increased Danny’s dosage that day to accommodate a slight weight gain since his last visit. How we looked at each other and at Daniel as we left the hospital that day. And how Danny looked back at us: cool as a cucumber, as usual, and ready to get some lunch and back to playing with Tommy.
Four days later, on December 12, 2009, we found Danny’s lifeless body in his bed at 7:15AM .
How many seizures did Danny have that we did not catch? We will never know. We wonder what Danny knew. We wonder what our little, middle boy knew. One thing we do know are the last words to ever fall upon that little toughie’s ears. They are the words whispered by his mom to Danny each and every night as she put him to bed: “I love you, sweet boy.” These words were always followed by three kisses: one to the forehead, one to the nose, and one to the lips. I love you, sweet boy.
And now life continues –in many respects– albeit without the soft bounce of one little boy’s feet upon the dirt of the Earth, and the family that was is now the family that is. Our Danny boy has entered a new phase, part of which is in the form of his organization, the Danny Did Foundation, which derives from the last line of Danny’s obituary: Please go and enjoy your life. Danny did.
Turns out that that that last line of Danny’s obituary caught the attention of many people, including a writer from the Associated Press, who penned an article that started like this:
“The disarming smile of a 4-year-old boy with a buzz cut brightens an otherwise drab newspaper page, where whole lives are summed up in three inches of tiny newsprint. Danny Stanton’s death notice first makes you wonder how he died. But the eight haunting, final words make you want to know how he lived: ‘Please go and enjoy your life. Danny did.’”
Danny Did enjoy his life. Danny Did engage others in his life. Danny Did take his time in life. Please Go And Enjoy Your Life. Danny Did.