By Peter Schaffran, Case Manager
I began supporting those with disabilities in 2002 when I worked with developmental disability children. I was a college student at MSU – Mankato and I was searching for the right fit after graduation. After I short time working at Pinnacle with these children, I knew I had found my calling. A few years later, I took a job at Hammer. I really didn’t know what I was in for when coming to Hammer. However, I can easily say it has been a pleasure meeting/serving each individual, I have enjoyed working with the other employees and I have made great friends. In fact, it was while working at Hammer that I met my wife, Carrie!
In late 2009, Carrie found out we were pregnant with our first (and only) child, Max. It was the day before Thanksgiving and I was at work. Carrie called me at 7am to tell me the big news. I was instantly overcome with excitement about the thought of holding my child for the first time and embarking on the journey of parenthood. We had no idea how challenging the journey was about to become …
In April of 2010, we found out that our son was going to be born with a rare birth defect called Bladder Exstrophy (BE). BE is so rare that only 1 out of 50,000 children are born with it. At the time, we had never heard of it and initially had no idea what to do.
After the smoke cleared, my wife did some research and discovered that the best urologist in the world worked at Johns Hopkins in Baltimore. She decided, without hesitation, she was going to give birth at Johns Hopkins hospital. Within 24 hours of our son’s birth, immediate surgery was required to insert the bladder back into the abdomen. For what seemed like an eternity, Max had to stay in traction. This meant his legs had to be held up at a 45 degree angle so that his bladder would not come back out. We were finally able to hold our baby for the first time after he came out of traction – exactly 4 weeks after he was born. We had to stay in Baltimore for the duration of Max’s recovery, which turned out to be about 6 weeks until he was healthy enough to go home.
These first three and half years of Max’s life, he has had to overcome a number of struggles. His life has been quite a bit different from the majority of children his age. He has had several surgeries at Johns Hopkins and Cincinnati Children’s hospitals. Without going into detail, he has also had several minor hiccups along the way – some related to BE, some not.
As a parent of a child with disability, it is difficult to watch your child struggle as he continues to learn and grow. Family and friends have children around the same age as Max, and they are all supportive of their child’s accomplishment. I try to be supportive as well, but it can be difficult when your child is has such difficulty reaching those same accomplishments.
That said, my wife and I are truly blessed to have the opportunity to share life with such an awesome kid! Despite the many road bumps he has encountered, Max has such a tremendous attitude and a zest for life. Though it has been a rough journey for the three of us, I feel that we are all better because of it. It has helped my wife and I become better parents, and hopefully, it will help Max in future challenges he experiences.