Thank you all for coming today to celebrate and remember my dear beloved brother John. Today I would like us to remember John, share some stories about him and of course-say good by to him.
John Rosen was a real jerk, said no one ever in the universe. On the contrary, John was the exact opposite. You can just look around the church here today and see so many people who were touched by John's life.
It is safe to say that all of you knew my brother in one way or another. For some of you he was a coworker. He was the coworker who was reliable and always polite and smiling. For some of you he was a former classmate who always had a sunny disposition and a positive attitude. For many of you here today he was a part of your church family. He was the guy who was always smiling, always positive. For the rest of you he was a good friend. Someone that again, was always smiling, always polite, always asking about your well being or the well being of your family. Some of the words that have been used to describe John are "brave", "courageous", "kind soul", "positive attitude", "gentle soul", "understanding person", "inspirational", "empathetic." Truly John was all of these things.
John was a brother, an uncle, a cousin, a nephew, a good friend, and of course a loving son to a wonderful mother and father. Today, I would like to talk more about John and tell you some things you might not have known about John and share some of his stories.
John was born with Spina Bifida which is a birth defect that affects the growth and development of the spine in an unborn baby. When I was a kid, Spina Bifida was a big word so our parents used these words to describe it. We always said, John was born with an "open spine." If you want to learn more about it, I invite you to google it or check out the brochures available. Nowadays Spina Bifida can be detected in a developing fetus and surgery can be performed in utero to correct the problem. For John, that technology did not exist and for people of John's cohort who were born with an open spine, they were most often confined to a life of limited mobility with not as many life opportunities as the rest of us.
However, in John's case he was fortunate to have a brilliant young neurosurgeon and a genius mad scientist of a doctor at Children's hospital in Washington DC. He was also fortunate to have super supportive parents. My mom and dad went the extra mile to provide John with the best care possible. My mom and dad's unconditional love along with my dad's engineering brain helped contribute to John's rich life. In the beginning of John's life though he had to face a number of challenges, and the solution was often surgery.
Dr. Milorat was technically not even on the staff at Children's hospital when he performed his first surgery there. John was his first patient. Dr. Milorat had been repairing spines in New York and was well known for being a superb neurosurgeon. Dr. Milorat thought that John would be able to walk which was certainly not true of many people born with an open spine. John had only been alive for 4 hours when he had his first surgery to close up his spine. Later at one month of age, John had a plastic tube, a shunt, put into his body that drained cerebral spinal fluid from the brain down into his stomach.
Dr. McKay was performing revolutionary surgery to repair, correct, and rebuild children. I can imagine the conversations he must have had with other doctors. "Well, why don't we fuse those bones together so he can stand on that leg?" "Why don't we take out that bone, twist it around, and bolt it back together with metal pins? We can put a cast on it until it heals in the correct position." "How about if we take out that muscle from his stomach and put it in his leg?" "How about we cram titanium rods into his back?" These are all things that John had done mostly at a very early age.
In fact, by the age of 12, John had had 24 surgeries. For those of you who might be arithmetically challenged, that's two surgeries a year on average. And these were not simple surgeries. This was not an ACL repair. No, these involved open heart surgery, brain surgery, and other complicated procedures.
The reason these surgeries were revolutionary is they allowed John mobility. They allowed him to walk. And after lots of physical therapy at the old Children's Hospital in Washington, DC, John did exactly that. He walked. He had braces on his legs and used two small half size crutches but he walked. My father who took many many photos in his lifetime documented it with his camera and wrote on the back of the photo, "John walks."
If you have not had a chance to see the photo, I invite you to take a look at it. John has his signature smile.
Through the years, I took many trips with John to Children's hospital for follow up visits. My mom would drive us through DC using her crazy back road routes. We snaked our way through the city with limited number of left turns. We would pull up to the hospital and an old guy there would say, "Hi Mrs. Rosen". And then we would get out and he would go park the car. It was not valet parking. There was just limited parking and this old guy would somehow magically squeeze everyone's car into tiny parking spaces. We took many trips to that hospital and many more to the new Children's Hospital in another location in Washington DC. You might be tempted to say, it was a way of life. But it wasn't. It was part of our life but it did not define us. Our close relationships with each other, our adventures together, our family, was central to our lives growing up and John was a big part of it.
I remember elementary school vividly. When it was lunch time, I got out of class a little early so I could go get John and take him to lunch. I would go to his classroom and put him in a little red wagon and wheel him to lunch. We would eat together and then I would take him outside for recess where I would drive him around the playground. I was proud to be able to help my brother get around and it truly was the highlight of my day.
I remember one day when I was in sixth grade. It was recess and John was a little older and walking around doing things on his own. He walked up to me and my friend. Now John would want to make sure I mentioned who this friend was exactly. It was Jeff Rogers. John walked up and said he did not feel well. He knew something was terribly wrong. John about collapsed into my arms. Jeff and I rushed him to the nurses office. He was turning blue. It was very scary for John and for me. Ultimately, this was one of those occasions where John would have to have emergency surgery to fix a complication with his shunt. In this case, he had an infection where the shunt terminated in his heart. John pulled through this surgery with flying colors as he always did and continued being the positive inspiration to all of us. Life went on as usual.
I can remember spending time in John's room with him playing various games that children play. One very strong memory I have is the two of us listening to a Beatles album and playing air guitar and air drums. We would use tennis rackets as guitars. We would play through the entire greatest hits, singing along and rocking out. It was one of the many childhood memories I have of John and I - doing things together.
I remember eating grilled cheese sandwiches together after school while we watched Batman, Johnny Socko and Ultraman. It was part of our brotherly bonding. As an adult, John and Tom had similar bonding experiences watching one of John's favorite sitcoms, Everybody Loves Ramon.
As John got older and stronger, he was able to do lots of things that kids without disabilities do. John participated in games of 123 which was sort of like Kick the Can. We tossed the football around, we kicked the soccer ball around. Sometimes the neighborhood kids would gather and play baseball in the street in front of our house. We used a whiffle ball bat and a tennis ball. We got better action with the tennis ball. John would stand at home plate with one crutch supporting himself and the bat in the other hand. He got really good at the one handed whack and was able to hit the ball and get to first base.
John did a lot of the things that kids do. In fact, there is one story that is particularly telling in regards to John being a mainstream guy. At one point in John's childhood, after many summer nights of playing outside with his family and friends, he developed a pain in his leg. So of course my Mom took him back to Children's hospital to see Dr. McKay. Dr. McKay determined that John had a stress fracture in his tibia. And Dr. McKay literally did a happy dance around the office. That might seem and odd thing. But Dr. McKay realized that a stress fracture in the tibia from playing too much whiffle ball, and 123, and kicking the soccer ball around was not something someone born with an open spine typically encounters. John was active and was putting all of Dr. McKay's operations to the test. Dr. McKay was so happy that John was leading an active life.
And John continued this active life. My dad and John would play pool nearly every night. John always had a bike of some sorts. From the Hot Wheels plastic bike he had as young child to the custom imported Bob Jackson racing trike, John liked to get out and ride. Him and my dad rode often. And I remember one long ride we all took together many years ago. John rode his trike along with the rest of us from his house on Jackson Parkway all the way to Washington DC on the bike path. I figure that it is about a 15 mile ride. He rode the whole way under his own power. It was a pretty epic trip for him and probably the farthest he ever went in one shot.
Not only did John like participating in sports, but he loved to watch sports in person and on TV. He came to our soccer games. He watched Tom play, Erik, me, Melissa, Becky, and Emma. He was one of our best supporters. I remember when one of my coaches, Ernie Smith, asked John to be the honorary captain of my soccer team. Before each game at the coin toss, John would go out to the center circle in his uniform and call the coin toss. I was so proud of John, my little brother. I could not tell you much about those years playing soccer but I do remember John walking out on the field every weekend.
In addition to being our best supporter, he also like watching DC United, The Washington Capitals, and the Washington Redskins. He knew all the players names and their numbers. He even knew how to pronounce the names of all the hockey players-something that I could never do. John was great with names in general. I think he got that from my mom. He remembered names of professional athletes, actors, and most importantly friends and family. He had an uncanny ability to remember names and telephone numbers as well. I can still see my dad smiling and shaking his head in gentle surprise as John would recall from memory someone's phone number or address. Perhaps that skill served him well in his job at Navy Federal Credit Union where he worked for 25 years.
Sometimes going places with John was interesting. With all the hardware in John's body, he really gave the TSA problems. He would always set off the metal detectors at the airport. And then he would politely put his crutch in front of him and lean on it with his stomach and put his hands to his side while they scanned him with the wand. This was not easy for him but he did not complain. He simply did as he was told by the TSA and then when about his business. It was really no big deal to him.
Despite John's disability and all the challenges he faced, he was always positive and quick to smile. He was always concerned for other people beyond himself. John's day started like all of ours with him getting out of bed. This was not something that was super easy for him but he did it every day. It took effort. He got out of bed, he took a shower, he put on his socks and shoes and clothes. Something that we all take for granted. It was a struggle for him every day of his entire life but he did it and he didn't complain about it. He just did it. He showed up for life every day, always with a smile. Positive, loving, caring, John was an inspiration to me and many others. When I get down about this or that or I am struggling with something, I always think of John. He would soldier through any challenge head on. Often he did not have the option. He endured much physical pain throughout his life. But he always fought through it.
I can remember asking him once while he was in one of his multitude of casts, "does it hurt?" John gently nodded his head and said, "Yeah, but it will go away eventually." I ask you to remember John as the the inspirational person he was. When you are having a bad day or facing a challenge, remember John and how he faced all his challenges head on with a great attitude and a happy smile. John is really a role model for all of us. He cared about people and was always polite to strangers. Even when he was suffering in the hospital towards the end of his life, he always said thank you and please to his caregivers. When he did not have the strength to sip water out of a straw, I dripped the water into his mouth. He would always say, "thank you." And I always said "your welcome brother, I love you." And he told me that he loved me too. We will all miss John immensely. But his spirit will always be with us.
As some of you know, I train and compete in long distance triathlon. When I am struggling through the last few miles of a long day of swimming, biking and running, I will always have a leg up on my competitors. I will have John in my heart. His strength, his courage, his gratitude and positive attitude will always be with me. And at the end of the day, together we are unstoppable.
Please be thankful for all the many blessing you have in life. John was always thankful. We will never forget you brother. We love you and we miss you. May you rest in peace.
