Ever see those sad images of young third-world children living in absolute squalor with very little hope of a better life? What did they ever do to be born into such an existence? They have absolutely nothing...survival is day-to-day. The barest essentials for life are not always theirs and yet...when outsiders come to their poor villages trying to help, and the cameras are there to record the events, what do we see? Despair? Sometimes, but often their young faces will break into big smiles, an impromptu soccer game will break out using a taped-up bunch of rags as a ball, and for a few moments they forget about their poverty and choose to be happy.
Many people carry heavy loads. I sometimes read about a celebrity or star athlete whose life appears to be all one could wish for. I might find myself thinking, man I wish I could be in his shoes. Then I find out he has an Autistic child or seriously ill spouse, and I am once again reminded that life is not fair. There are no exemptions based on fortune or fame; the hands get dealt at random and we must play the cards as best we can. I am often amazed at how well some people cope. They bear burdens that most of us cannot fully understand, and yet they manage to find a way to bring joy and happiness into to their lives.
Families with children who are born with medical conditions that require constant monitoring and attention face challenges that can be overwhelming. I see this with my granddaughter Ava and the ongoing care she requires. My daughter and her husband have altered their lives and schedules to care for Ava. They know more about her condition than many doctors, and sleep every night with one eye open, in anticipation of any distress she may encounter. Because of their love and care, and the skills of her medical specialists, Ava has become a lively, intelligent and fun-loving seven-year old. I see the three of them pursuing their lives despite the very real challenges they face. I see them at family gatherings laughing and enjoying themselves knowing there will be more surgeries and more worrisome times ahead. They choose happiness when they can get it.
You move from fear and worry to laughter and happiness and then back again. As a result of Ava's condition, we have met other families of children with craniofacial disorders who understand this kind of compartmentalized life. My friend Joe and his wife understand it all too well. Joe has created a blog called "Ellen's Way" where people caring for children (or adults) with such challenges can tell their stories. I invite you to read a few of them, especially when you start thinking, as I sometimes do, that fate deals you more than your share of grief. I promise you’ll get a better perspective on the “fairness” of life. http://ellendelbloggolo.blogspot.com/
I’ve seen how Ava’s parents sink exhausted after the ordeal of each surgery…the worrying, the trips into the O.R. to hold her hand through the anesthesia, the nail-biting until the doctors assure them that all is OK…it takes a heavy toll. I’ve also seen them reading stories and laughing with her when it is all over, being strong for her even though they may not be feeling very strong themselves. Parenting is a hard proposition. When the burden of a chronic medical condition for your child is thrown in, it’s almost like God is piling on. Somehow though, they get it done, finding joy and happiness in Ava’s steady progress, in the support of friends and family, and in each other.
They are an extraordinary family and we love them. All the courageous families who cope with such compartmentalized lives have my utmost respect and admiration.
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