Some of these photos are of Michele's childhood home, an aunt who is nearing her 100th birthday, the first churches in town, and an art exhibit including the work of many of the town's famous painters, sculptors and ceramic makers -- all of whom are schoolmates of Michele. Michele's family history goes back many, many generations and these photos share some of that history -- the house where he was born, his grandparents store, the homes of many relatives and friends, and the alleys where he played the Italian version of stick ball. It was really wonderful sharing some of that history with the kids in a "Roots" sort of way :)!
Sunday, January 31, 2010
The Italian Adventure - The Sequel......
.....well, not really a sequel but just the last photos I haven't gotten around to sharing. All of these shots are of Grottaglie, the town Michele is from and where we lived before coming back to the States. Many where taken in "Grottaglie Vecchia" which is the old part of town and dates back nearly a thousand years. Pretty incredible when you consider that we live in a state that isn't even a hundred years old yet!
Some of these photos are of Michele's childhood home, an aunt who is nearing her 100th birthday, the first churches in town, and an art exhibit including the work of many of the town's famous painters, sculptors and ceramic makers -- all of whom are schoolmates of Michele. Michele's family history goes back many, many generations and these photos share some of that history -- the house where he was born, his grandparents store, the homes of many relatives and friends, and the alleys where he played the Italian version of stick ball. It was really wonderful sharing some of that history with the kids in a "Roots" sort of way :)!
Some of these photos are of Michele's childhood home, an aunt who is nearing her 100th birthday, the first churches in town, and an art exhibit including the work of many of the town's famous painters, sculptors and ceramic makers -- all of whom are schoolmates of Michele. Michele's family history goes back many, many generations and these photos share some of that history -- the house where he was born, his grandparents store, the homes of many relatives and friends, and the alleys where he played the Italian version of stick ball. It was really wonderful sharing some of that history with the kids in a "Roots" sort of way :)!
Tuesday, January 26, 2010
"How’s Max?"
This is a question that isn’t easy to answer and sometimes isn’t easy to ask….although I’ve sort of always known this it became crystal clear to me recently when a new acquaintance, after hearing Max’s history, asked me how Max was now. When she asked me “How’s Max?” I realized that I hadn’t answered this question (at least out loud to another person) in a very long time.
During the last eight years we have come to understand and accept that Max’s “journey” is not to be a short one with a fixed, tangible end that can be measured in a “cure”. When a child has more than one congenital defect, a.k.a. some syndrome of unknown origin, it cannot reasonably be expected that one day we will awaken to find that a cure has been discovered for all of Max’s puzzle pieces. We accept this, it is what it is, but this doesn’t mean that we are not frustrated or saddened by the fact that our son will never really know a life without medical interventions of some type.
Our road is long and winding and will continue for years to come. This journey without end is our way of life. Yes, we get long periods of mere “maintenance” of symptoms when nothing really acute happens, and for these periods we are incredibly thankful. But we have also come to understand that these peaceful moments can blow up in our face at any given moment. Again although frustrated and sad, we accept this as our reality.
However, this is our reality and we cannot expect that others can fully grasp this way of life. For some, after eight years Max’s story is “old” and they really don’t know what to do with it anymore. Many friends, and even family members, no longer inquire about Max and his health. Perhaps they feel that if there was anything important to share we would offer the information up without be asked. Or perhaps they just don’t know how to handle our reality, most have healthy, typical children and they don’t want it to seem like they are setting Max apart with some form of pity. Or perhaps they’re just tired of trying to keep up with the chaos in our lives.
I don’t want to imply for one moment that no one cares about Max or us, it is abundantly clear that this is not the case. It’s just that we realize that it is often difficult for others to feel comfortable relating with the family of a chronically ill child. Heck, I’m certain that eight years ago I was one of those people, complaining about mundane childhood illnesses like ear infections, fevers, rashes and the like without realizing how profoundly lucky we were to have a healthy child.
I guess what I’m really trying to say, perhaps not very eloquently, is that although we may be frustrated or sad because of the hand Max has been dealt we’re at peace with it. Mostly because Max is at peace with it, he doesn’t complain or even give much thought to his many medical conditions. In his mind he is no different than anyone else, maybe better, but certainly not different :)! And because we’re OK with the whole thing we’re OK with people asking or not asking about Max. Either way we know you care about him (and us) so asking “How’s Max?” is nice but not always necessary.
During the last eight years we have come to understand and accept that Max’s “journey” is not to be a short one with a fixed, tangible end that can be measured in a “cure”. When a child has more than one congenital defect, a.k.a. some syndrome of unknown origin, it cannot reasonably be expected that one day we will awaken to find that a cure has been discovered for all of Max’s puzzle pieces. We accept this, it is what it is, but this doesn’t mean that we are not frustrated or saddened by the fact that our son will never really know a life without medical interventions of some type.
Our road is long and winding and will continue for years to come. This journey without end is our way of life. Yes, we get long periods of mere “maintenance” of symptoms when nothing really acute happens, and for these periods we are incredibly thankful. But we have also come to understand that these peaceful moments can blow up in our face at any given moment. Again although frustrated and sad, we accept this as our reality.
However, this is our reality and we cannot expect that others can fully grasp this way of life. For some, after eight years Max’s story is “old” and they really don’t know what to do with it anymore. Many friends, and even family members, no longer inquire about Max and his health. Perhaps they feel that if there was anything important to share we would offer the information up without be asked. Or perhaps they just don’t know how to handle our reality, most have healthy, typical children and they don’t want it to seem like they are setting Max apart with some form of pity. Or perhaps they’re just tired of trying to keep up with the chaos in our lives.
I don’t want to imply for one moment that no one cares about Max or us, it is abundantly clear that this is not the case. It’s just that we realize that it is often difficult for others to feel comfortable relating with the family of a chronically ill child. Heck, I’m certain that eight years ago I was one of those people, complaining about mundane childhood illnesses like ear infections, fevers, rashes and the like without realizing how profoundly lucky we were to have a healthy child.
I guess what I’m really trying to say, perhaps not very eloquently, is that although we may be frustrated or sad because of the hand Max has been dealt we’re at peace with it. Mostly because Max is at peace with it, he doesn’t complain or even give much thought to his many medical conditions. In his mind he is no different than anyone else, maybe better, but certainly not different :)! And because we’re OK with the whole thing we’re OK with people asking or not asking about Max. Either way we know you care about him (and us) so asking “How’s Max?” is nice but not always necessary.
Sunday, January 17, 2010
We’re Baaaaaaaaaack!
Actually we have been back for nearly a week but we’ve all been so sick since getting home I didn’t have the energy to drag myself to the computer. We all seem much healthier and pretty much back to normal, or at least our normal.
By normal I mean the reality of Max has hit hard. For the last eight years the start of a new year always means I am all consumed with the countless tasks of managing this business known as “parenting a chronically ill child”, i.e., the medical insurance bureaucracy. A new year always means new authorizations for every aspect of Max’s care. I have been spending my time getting United Healthcare’s pontifical blessing for all of Max’s meds, supplies, therapies, the 67 different specialists he needs to see…etc., etc., etc. And once I do or don’t get that blessing I then get to call Max’s secondary insurance for their blessing which basically means I have to start my whole spiel from scratch. This year I considered writing myself a script, sort of what they use in call centers, and taping it so as to play it back to the dozens of customer service reps, RN caseworkers, and pharmacy techs I have to speak to during this whole infuriating process. However, I quickly realized that this would take half the fun out of the cat and mouse game of explaining over and over again that all I’m asking is that they renew the previous year's authorizations, many of which are for services that have been in place for years. This year the most important lesson I have learned is that we officially have the CRAPPIEST insurance ever! I knew this was coming but the reality of it has been like driving into a brick wall at 100 miles an hour. Until now we have always had great insurance (wow, I can’t believe I just said that!) but this year it seems we have joined the rank and file at the lowest rung of the insurance ladder. Our new plan requires even greater managing skills as I have to be able to account for every dollar we spend and then pray to God that we have enough left in our account in case anyone other than Max gets sick. Although I know we are better off than the 47 million uninsured Americans it certainly didn’t feel that way last week when I really had to debate whether or not to bring Ellie to the doctor because I wasn’t sure it would be covered! Ugh, why can't it ever be easy?
Now that we’ve settled in and I have most of Max’s local medical care squared away it’s time for me to get moving on the planning phase of our next trip. Nothing quite as exciting as Europe but Baltimore is calling and so we must answer. I hear Maryland is beautiful in March…
Thanks for checking in and have a great week all!
By normal I mean the reality of Max has hit hard. For the last eight years the start of a new year always means I am all consumed with the countless tasks of managing this business known as “parenting a chronically ill child”, i.e., the medical insurance bureaucracy. A new year always means new authorizations for every aspect of Max’s care. I have been spending my time getting United Healthcare’s pontifical blessing for all of Max’s meds, supplies, therapies, the 67 different specialists he needs to see…etc., etc., etc. And once I do or don’t get that blessing I then get to call Max’s secondary insurance for their blessing which basically means I have to start my whole spiel from scratch. This year I considered writing myself a script, sort of what they use in call centers, and taping it so as to play it back to the dozens of customer service reps, RN caseworkers, and pharmacy techs I have to speak to during this whole infuriating process. However, I quickly realized that this would take half the fun out of the cat and mouse game of explaining over and over again that all I’m asking is that they renew the previous year's authorizations, many of which are for services that have been in place for years. This year the most important lesson I have learned is that we officially have the CRAPPIEST insurance ever! I knew this was coming but the reality of it has been like driving into a brick wall at 100 miles an hour. Until now we have always had great insurance (wow, I can’t believe I just said that!) but this year it seems we have joined the rank and file at the lowest rung of the insurance ladder. Our new plan requires even greater managing skills as I have to be able to account for every dollar we spend and then pray to God that we have enough left in our account in case anyone other than Max gets sick. Although I know we are better off than the 47 million uninsured Americans it certainly didn’t feel that way last week when I really had to debate whether or not to bring Ellie to the doctor because I wasn’t sure it would be covered! Ugh, why can't it ever be easy?
Now that we’ve settled in and I have most of Max’s local medical care squared away it’s time for me to get moving on the planning phase of our next trip. Nothing quite as exciting as Europe but Baltimore is calling and so we must answer. I hear Maryland is beautiful in March…
Thanks for checking in and have a great week all!
Friday, January 1, 2010
The Italian Adventure - Part III
Because of the holiday we decided to park the tour bus and stay home. In celebration we slept in late, skipped breakfast and went straight to lunch! We spent the day with friends and family which is starting to feel bittersweet because we know the number of days we have left have dwindled down to just a few. All in all it was a great start to 2010 and we can only hope the rest of the year goes as well!
Tonight's show has a marine theme as we've spent much of the last few days by the sea. Without a doubt my favorite part of the trip!
Tonight's show has a marine theme as we've spent much of the last few days by the sea. Without a doubt my favorite part of the trip!
Subscribe to:
Posts (Atom)
