For years, the Razzano family lived on the edge with the possibility of the unimaginable - the death of their beloved baby boy Emilio. But with the celebration of Emilio's fifth birthday this week, it seems the worst is over. May 1, 2003 marked the beginning of the Razzano family's journey through almost unbearable grief, and also unparalleled joy. Emilio was born with hypo plastic left heart syndrome and has so far been through three open heart surgeries and countless trips to the hospital for treatments. Despite enduring more than most people do in a lifetime, Emilio shows exuberance for life, said mother Pam Razzano."During Emilio's journey through life, all of those who know him know that it has never slowed him down," she said. "He continues to hurdle life's hardships on a daily basis that have been along his path."For five years, readers of The Chief have followed the family's arduous journey through regular updates, and many have helped along the way by organizing and donating to fundraisers and by sending messages of support.Emilio has come a long way since his days as a fragile newborn when the Razzanos were told he would die after a mere 12 days of life. He's dealt with numerous hurdles, including a diagnosis of deafness at 18 months of age and more recent diagnoses of ADHD, learning disabilities and moderate brain damage as a result of a stroke that followed one of his surgeries.As Emilio's trips to hospital become less frequent, a routine life sets in along with the realization that a lifetime of challenges await the entire family."It has been the hardest, most difficult thing to keep Emilio healthy," said Pam. "An everyday struggle to keep Emilio out of the hospital and home where all kids belong."Over the past five years, Pam said she's met several families dealing with similarly ill children, and has found comfort in stories and poems mothers have shared with her. "What does it mean to be the parent of a child with a heart defect?" writes one mother. "It means going into your baby's room a dozen times a night to see if he's still breathing. It means praying for the will to live, even if your baby doesn't. "It means knowing you're the luckiest person in the world just to be a parent. It means your pride in your child's accomplishments is unparalleled."One cardiac patient's mother compared the experience of having a child with severe health problems to anticipating a life-long dream trip to Italy only to be re-routed to Holland. "Everyone you know is coming and going from Italy, and they're all bragging about what a wonderful time they have there. And the pain of that will never ever, ever go away because the loss of that dream is a very significant loss," she writes.But perspective soon shifts. "After you've been there for a while, you look around and you notice Holland has windmills, Holland has Rembrandt. "So you can spend the rest of your life mourning the fact that you didn't go to Italy, but you may never be free to enjoy the very special and very lovely things about Holland."Pam, her husband Enzo and their older son Marcus are learning sign language and everyday creating a deeper connecting with their joyful boy.And Pam says she's thankful for those lifetime friends and family who make the effort to understand."It's a very hard adjustment to accept a family member with a disability," she said."Some can do it and some can't."
