Charlie Jr's Journal 2010
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"The Circle of Life”
By Charlie Weis Jr.
Just this past Saturday, I spent my time being a deejay for the Hannah and Friends dance party. Hannah and Friends is an organization made for people with special needs and disabilities. At Hannah and Friends, there are fun programs for the people with special needs to do. As I played the music, I realized that the dancers who range from all ages, some are just five-years-old and some are as old as sixty-five, just enjoy being themselves. Even with their so called “disabilities,” they have fun dancing, singing, and enjoying their time together. Some of them have trouble communicating, others have visual impairments, and some lacked the ability to walk on their own, but yet I see the beauty of all these wonderful people. They are some of the most loving people I will ever meet and bring a smile to my face every time I am with them. I cannot even describe how much fun they have.
Individuals with special needs are people that are truly living the way God wants us to live. They love everyone and despite the problems they face, they are truly happy. Even one young girl at the dance was once asked what she did when people were mean to her, she replied, “I am even nicer to them.” This is a perfect example of the Christ-like way individuals with special needs act. It is amazing to think this great place would never have been without my sister Hannah. So let's now take a flashback to see the miracle that led to Hannah and Friends.
It’s February 1995, my mother is nearly seven months pregnant and our family is anxious for the birth of my baby sister. At this time, I am just 22-months-old with little knowledge of what is happening. So as my mother is going in for just another checkup, her ultrasound shows something disturbing. Her daughter is seen to have polycystic kidney disease. A disease that the doctors claimed gave her little to no chance of living. The doctors thought that it would be useless to go through having the baby since she would most likely die soon after birth. They suggested to my parents that my mother should have an abortion, they say it’s the best option. They want her to go to Kansas to have a late-term abortion. When my parents heard this they had an immediate reaction, “No.” My parents said there was absolutely no chance of doing that. They said the baby was alive and kicking, it was their child. The doctor refused to talk to them again. My parents went home that night knowing they made the right decision. As my mother laid in bed that night praying to God, he told her everything would be ok, and she trusted his words.
Now it’s April 7,1995 and my sister Hannah is born, I am no longer the only child. Hannah is faced with complications as expected. She is in intensive care right after birth. She is kept there for three long days. The doctors are perplexed as to what the problem is with her kidneys. The head surgeon at Boston Children’s Hospital concludes that one kidney is not functioning at all, and the other has a constricted ureter. Two months later he removes the one kidney that is not functioning and fixes the other kidney, luckily she can survive on one kidney. The surgery lasted eight tedious hours, while my parents awaited the news of the surgery.
The surgery was a success, but unfortunately two years later, we realized Hannah had developmental delays. However, the birth of Hannah itself was a miracle, it was a true celebration of life. In fact, unbeknownst to my parents, Hannah means “grace” or “gift from God” and that could not be more true. At two-years-old, Hannah is dealing with several developmental problems and also an inaccurate diagnosis of autism. My parents are trying to deal with this as well as raising their son, me. They search for the right doctor to find out what was truly wrong with Hannah. In fact, they went to seven different neurologists in all. They are determined to figure out the problem. They love Hannah unconditionally and will do anything for their daughter.
As Hannah grows older, symptoms appear to worsen. At eight-years-old, she is now diagnosed with mental retardation. At ten-years-old, we discover Hannah is suffering with seizures. She is put on anti-seizure medication, and finally at twelve, a neurologist in Chicago diagnoses Hannah with Landau-Kleffner Syndrome. The syndrome can be difficult to diagnose and is often misdiagnosed as autism, learning disabilities, hearing problems, and other things. Despite all of these heartbreaking problems our family endured, we always understood that Hannah was a human being just like us. Hannah loved us, we loved her, and that’s all that mattered.
As Hannah and I grew up, my mother had to raise the both of us which was very difficult. She had to travel with Hannah trying to figure out what was wrong as well as doing simple things such as driving me to school, cooking, and doing other things. I had to make small sacrifices as well as a child. I had to help my mom in any way possible as well as missing out some of the simple childhood things like playing little league baseball. Even though we had to go through these sacrifices, they feel minute compared to what Hannah had to deal with. We embraced the challenges as a family, and we would not have it any other way than having our Hannah. Our gift from God taught us many life lessons. Through Hannah, we became better people.
My parents knew they had to help out other families facing similar situations. They had an idea, making a charity in Hannah’s name. They came up with the name, Hannah and Friends. Hannah and Friends was founded in 2003. It started in Rhode Island, where we were living at the time. At the time, it was just your typical “mom and pop” charity with some big dreams. The charity did simple things at first such as giving grants to families who needed money for their children with special needs.
In 2005, we moved to South Bend, Indiana as my dad became the coach of the University of Notre Dame. Holding this job allowed the charity to bloom. Many people began to donate money and fundraisers began to raise large amounts of money for the charity. The charity raised enough money to build a neighborhood where adults with special needs could soon live. The neighborhood is now built and currently has four residents living on the property as well as four residents moving in June.
Our family is now moving once again, this time to Kansas City. This is quite a coincidence. Our family is now going to the place where doctors wanted my sister to die. Instead of death, Hannah will continue to live out her culture of life in Kansas City. It is funny to think this. Maybe God planned it that way. Maybe Hannah has one final job - to teach people how to live. They say life comes full circle, this is definitely true in Hannah’s case. She will continue the circle of life in Kansas City.
April 17, 2010. Hannah has grown into a wonderful teenager who just celebrated her fifteenth birthday last week. She is now at the Hannah and Friends dance party with thirty of her friends with different abilities. As I deejay and watch the children with special needs dance to the music, they begin flapping a rainbow-colored, circular parachute. They enjoy this so much and as I watch, I begin to see. I see the circle of life portrayed as this parachute. A metaphor to me how amazing the sight is. I began to think how incredible it is that this charity even exists, and as I continue my thought, my sister runs under the parachute, smiling as always. Hannah is the circle of life, soon her life will go full circle, and she will show us all how to build the culture of life.
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These kids are out there, having so much fun...they love it.
Hannah and Friends is a place for people of all abilities.
Charlie Weis Jr.
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February 11, 2010
I go there nearly five times a week, and my feelings have never
changed. It’s the strange feeling I get every time I visit Hannah and
Friends that keeps me coming back. No matter what the season, hot
or cold, rain or snow, green leaves or the beautiful autumn leaves,
the feeling never changes. The feeling I get when I go there is simply
a feeling of goodness. Every single time I step on the grounds of the
farm, I just feel better about life itself. It may be the beauty of
the farm, with several animals such as horses, goats, and cats or the
beautiful green grass that covers several acres of land. Perhaps that
feeling of goodness comes from somewhere other than that wonderful
property.
At Hannah and Friends, so many good things happen to good people
there. Children with all different types of special needs regularly
attend activities at the farm. These children are able to go to Hannah
and Friends to escape the troubles of daily life where many
“normal” people do not accept them for who they truly are. The farm is
welcoming to all children with special needs. Children with special
needs enjoy the company of those who they can relate to and those who
love and care for them. It is a wonderful place to go for these
children who often are looked at as misfits to society and have
trouble enjoying themselves in public places. Hannah and Friends
welcomes all children with what I like to call “different abilities.”
The children participate in activities such as singing and dancing at
dance parties, running and playing different games at a fair, and
cooking delicious meals at culinary arts classes. The smiles I see on
the faces of these children give me that good feeling deep down.
My sister Hannah who was diagnosed with global developmental delays
is another reason for this good feeling. Many people stare at Hannah
when we are out in public and look at her like she is not as good as
“normal” people. Seeing Hannah have so much fun at the farm, a place
she essentially created, makes me feel good. My parents knew they
needed to do something for people with different abilities when my
sister Hannah was growing up. They founded Hannah and Friends
specifically for these kids. In less than a decade, their vision has
improved the quality of life for thousands of individuals. When I go
to Hannah and Friends, I am constantly reminded of how much the
charity does for those who are not as fortunate as most. Knowing all
the good that comes from this magnificent place is a feeling I wish I
could have for my entire life.
Hannah and Friends is a place for good people. I may not know
the exact reason why every time I am at the farm I have such a good
feeling, but I have a pretty good idea. The ideas that provoke simply
from knowing what good the charity does make you feel great. Knowing
that I am a part of something that helps thousands of people and
improves many lives each and every day truly gives me a feeling that
is unbelievable.
