Most of my entries typically deal with situations and issues that arise in my own personal life. I haven't addressed many topics regarding my children because I've never wanted them to feel like they are on display. But this morning I shot a quick picture of the boys as we were getting ready to head to school. Our oldest, Michaela, was already in the car waiting when I snapped this photo.
You can tell that they are brothers. When we are out with the entire family, all seven of us, we receive many comments of the obviousness of the relationships of our kids. It is still cold here in NW Pennsylvania, but from the coats you probably can't tell that two of the three boys have Marfan syndrome. From L-R here are the heights and ages: Corban - age 10 - 5' 3", Dylan - age 9 - 5' 1", & Andrew - age 6 - 4' 5". Corban, the oldest boy, does not have Marfan syndrome while the two younger boys do.
All three will pass their respected grades this year (5th, 3rd, and 1st) and have similar dreams as many of their friends. Dylan is doing exceptionally well in school this year getting straight A's thus far. We have always encouraged him to use his mind and apply himself in his school work because, just like his father, he will have some limitations due to Marfan's. Amanda and I have started to guide Andrew the same way, but he just started school not to long ago.
When I look at my three sons, and also two daughter, I see my children. I don't see the genetic condition. I don't call them my " Two Marfan sons". They are "My Three Sons". Marfan syndrome has limited some of the things that I could do and even things presently that I wish I could do, but I am defined by who I am as a person, not the limitations that are part of my life.
Do Dylan and Andrew have as smooth as a road as Corban physically? No. Each year we visit the Pediatric Cardiologist, Pediatric Opthamologist, and their Geneticist. Each of these specialists live nearly 100 miles away, but we make it a priority to have them examined each year. They also have a wonderful local PCP who takes the time to learn more about Marfan syndrome to best treat the boys.
In February, Amanda and I went to Children's Hospital in Pittsburgh for an appointment for myself to the boys' geneticist. After the appointment, Amanda and I went to the cafeteria for lunch. This was the first time we had eaten there. While we were eating we looked at each other and said that their is a high probability that over the course of the next 10 years we will be dining there more often as Dylan or Andrew will probably need heart surgery. That's a hard thought and reality as a parent. My parents went through that when I was 18, and I know that it will be hard when my boys need major surgery.
With that said, I wouldn't trade my three sons for any others. They are God's gift to me and Amanda. I love them as much as the three children who don't suffer with Marfan's and I know that God has a perfect plan for their Marfan syndrome lives. With mom and dad and God, they will thrive regardless of Marfan's.
You can tell that they are brothers. When we are out with the entire family, all seven of us, we receive many comments of the obviousness of the relationships of our kids. It is still cold here in NW Pennsylvania, but from the coats you probably can't tell that two of the three boys have Marfan syndrome. From L-R here are the heights and ages: Corban - age 10 - 5' 3", Dylan - age 9 - 5' 1", & Andrew - age 6 - 4' 5". Corban, the oldest boy, does not have Marfan syndrome while the two younger boys do.
All three will pass their respected grades this year (5th, 3rd, and 1st) and have similar dreams as many of their friends. Dylan is doing exceptionally well in school this year getting straight A's thus far. We have always encouraged him to use his mind and apply himself in his school work because, just like his father, he will have some limitations due to Marfan's. Amanda and I have started to guide Andrew the same way, but he just started school not to long ago.
When I look at my three sons, and also two daughter, I see my children. I don't see the genetic condition. I don't call them my " Two Marfan sons". They are "My Three Sons". Marfan syndrome has limited some of the things that I could do and even things presently that I wish I could do, but I am defined by who I am as a person, not the limitations that are part of my life.
Do Dylan and Andrew have as smooth as a road as Corban physically? No. Each year we visit the Pediatric Cardiologist, Pediatric Opthamologist, and their Geneticist. Each of these specialists live nearly 100 miles away, but we make it a priority to have them examined each year. They also have a wonderful local PCP who takes the time to learn more about Marfan syndrome to best treat the boys.
In February, Amanda and I went to Children's Hospital in Pittsburgh for an appointment for myself to the boys' geneticist. After the appointment, Amanda and I went to the cafeteria for lunch. This was the first time we had eaten there. While we were eating we looked at each other and said that their is a high probability that over the course of the next 10 years we will be dining there more often as Dylan or Andrew will probably need heart surgery. That's a hard thought and reality as a parent. My parents went through that when I was 18, and I know that it will be hard when my boys need major surgery.
With that said, I wouldn't trade my three sons for any others. They are God's gift to me and Amanda. I love them as much as the three children who don't suffer with Marfan's and I know that God has a perfect plan for their Marfan syndrome lives. With mom and dad and God, they will thrive regardless of Marfan's.
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