I chose the title because it describes much of the history of my life. Throughout my life I have learned to take the challenging times and make them become important life lessons that I share willingly with others. I have made “lemonade” out of some of the “lemon” experiences in my life.
I was born with spina bifida and hydrocephalus. Doctors told my parents that I would not have a very productive life. Many were not even certain I would live. I was born with very difficult medical issues that needed to be attended to immediately. My grandparents asked that I immediately be baptized so I would be “safe” in the event that I did not survive. My birth was not what a new parent would consider a happy occasion. My birth was filled with lots of uncertainty and to be honest, a low sense of expectation for what I could become. My parents were told that I would be severely cognitively impaired. They were also told that I would not walk.
Thankfully, my parents took many risks (sometimes against the wishes and beliefs of other family members). They challenged the low expectations and myths that I would not live a productive life. Thanks to their risk taking and their strong determination I am living proof of someone who defied the odds placed as obstacles in my path. I continue full speed ahead!
My parents decided that they did not want me on an Individualized Education Plan (IEP). They thought I would be segregated from others. They didn’t want me to be treated differently. They wanted the best for me. What they did not realize is that the best of both worlds could have happened. I could have received the support that I did need and I could be treated equally and be supported and loved just the same. As a result of their decision I did not get connected to many educational supports that are extremely valuable such as Early Childhood services through Transition services for youth.
However, I managed okay. I received accommodations throughout my education with regard to the physical issues I dealt with. I did not however, get the educational support I needed to be more easily successful.
Since migrating to Minnesota, I have now been connected to support services including Vocational Rehabilitation Services (VR), Center for Independent Living support services, and much more. I am continually amazed at the services and support I have received. I just wish it was something that would have appeared in my life much sooner so I would have dealt with less lemon type experiences in my life.
I was lucky though. At the age of 23, I worked for Burger King in Iowa. I was proud of this. My co-workers were very creative. A ramp was built for me (without having to ask) so that I could work at the register. It was something that they just did without question. They thought it was “neat.”
They were amazed at their own creativity. From this experience I learned that there are people in the world that just simply and easily want to do what is truly and simply…the right thing.
I had the best of medical care through my life. Despite this, some lemons still grew. At the age of two my parents were told (since my shunt had removed itself from my heart cavity) that my shunt was “no longer needed.” Wrong! At the age of 10 it was documented that I had “severe hydrocephalus.” Unfortunately, nothing was done…until I turned 30. As a result of this issue not being dealt with I experienced many cognitive issues. I also didn’t deal with stress or anxiety well at all. I thought it was normal to be depressed and sad. I couldn’t follow conversation well.
Had I been on an IEP, I believe I may have been diagnosed as having more medical needs. I may have received support services in my classes. I didn’t do well in school at all. I continued that trend through high school and a failed attempt at college. I did not have the stamina to keep up nor did I have the attention span to deal with very much.
Now, the lemonade! My wife suggested that life could and should be better. She was understandably frustrated at times when she would give me a list of five things to pick up at the grocery store and I would only remember one. We decided to explore things a bit further. I went to see Dr. Nagib, who began to work his magic on me. He implanted a new programmable shunt. The surgery was less than pleasant …but the results were worth it.
Shortly after the surgery we decided (as did our bank accounts and future plans) that college would be something to try. I needed much more in life than a minimum wage salary. I was tired of living paycheck to paycheck….robbing Peter to pay Paul with some creative financing. I also had more dreams I wanted to achieve. I tried to choose an easier college…my wife wasn’t going for that.
I began the HR Generalist Associates degree program at Saint Paul Community and Technical College. Every Thursday night I came home and said “I quit…this is too hard.” My wife gave me a choice…continue…or find a new zip code in which to reside. The option was pretty clear. The plan was set in motion. It was do or die…lemons to lemonade (or else)!
Fast forward a bit here…I will now graduate with a 3.8 grade point average. VR services also set some good standards for me. I had to work to prove to them that I was committed to “the plan.” I appreciated having restrictions and guidelines (okay maybe not so much at first…but I grew to appreciate them).
I am a homeowner. I work full time while going to school. My nutrition leaves something to be desired but I am living the life of a fast paced student and goal oriented person.
I also continue to receive great medical care at the Lifetime Specialty Care Clinic. My appointments are well coordinated (for my hectic lifestyle). I contribute my time to my community. I share the lemons to lemonade theory I have designed to anyone who will listen. I try to share my experiences with others to give young families the hope and determination to set high expectations early on for their children. And, I speak loudly and often about the value of support services that are available to individuals who are committed to utilizing them for their purpose…to attain self sufficiency.
Here are some resources for you to start making lemonade:
• Spina Bifida Association of Minnesota – www.sbamn.com
• Spina Bifida Association of America – www.sbaa.org