The condition is called Hydrocephalus.
It’s okay, I didn’t know that much about it either.
First, let me start off by giving a brief explanation of what exactly this condition entails. In layman terms, it’s simply known as “water on the brain”, but as I have experienced with Teddy, (the little old man in an eight-year-old’s body) it is so much more than that.
Hydrocephalus is an excessive accumulation of fluid surrounding the brain and spinal chord that creates an abnormal widening of spaces in the brain called ventricles. There is no cure. Hydrocephalus can only be managed by the insertion of a shunt in the brain to drain the fluid. Shunts can have a high failure rate. Teddy, only living eight years on this earth, has endured more than thirty, (yes, you heard me correctly) surgeries. He has endured twenty-eight brain surgeries due to shunt malfunction, as well as two skull expansions. A total of thirty times is the amount in which Ted has been under the knife and has left Cohen’s Children Medical Center with a huge smile on his face, thanking the doctors for their time and effort helping him.
As with many conditions, there are precautionary measures to take, stressful consequences one experiences when simply trying to live life as routinely as possible, and anxiety that comes with the unknown of what might happen the next day. We can read about this stuff all day long, but it’s not until one has a personal experience with a disease or disorder, or associates closely with someone who has said disease or disorder, that one truly understands what it is like.
I shower both him and his beautiful, talented and inquisitive twin sister Zoe on a daily basis. More specifically, when I shower Teddy and help him wash the conditioner out of his gorgeous blonde hair, his illness suddenly becomes real. I feel his scars, tubes and shunt, and yet both of us joke how it may be the direct cause of his super power of remembering absolutely EVERYTHING. I’m telling you – this kid will remember not only your age, but everything you have done since your first encounter with him. You will NOT, and I repeat, NOT get away with lying to him.
I flash back to the moment I first met them on that chilly October afternoon; they had their elementary school’s carnival that took place on the large field in front of the red-bricked building. Their house sits at the corner, diagonally looking at the school that they attend and where the carnival is being held. “Hewitt” is the name of the school, and it reads in big, bold letters out front. I was ready an hour before my interview with his family (as I am always prepared well in advance for any type of job interview) and I’m feeling confident.
I pull up feeling optimistic about changing jobs and getting away from such a corporate, destructive environment that I once worked at and heading towards a more practical form of employment as I search to settle in a career. Graduation was nearing, and I was excited to see what the future may hold. Little did I know what I was about to walk into. I had spoken to the mom on the phone very briefly, but it is not until you meet with someone in person that everything they had previously described becomes that much more real.
At first, the kids were show-mans to me; I was a little put off by how outspoken they were. Andrea, Teddy’s mom, was very expressive about his condition and how instead of being a part of the Ellen Degeneres show, his wish, brought to him by the Make a Wish Foundation, was for him and his family to go on vacation. It didn’t seem real that an eight-year-old child could be so mature, and so willing to discuss what he had been through. It was also extraordinary to see how selfless he was with sharing the love for his family, and expressing such gratitude for everything they had done for him for the past eight years. I quickly learned it was anything but to show off, it was absolutely one hundred percent real. Looking at him, you would never know anything was wrong or what he had been through.
I could describe every detail of the day for the few hours I get to work with these special children, but instead, I’ll describe these two instances and what exactly I took from them. I feel these instances paint a much clearer picture of their personalities, and why I’m changed for the better. I recently had to get my wisdom teeth removed and I would joke with them how scared I was. Teddy started tearing, and began to hug me tightly. He took my hand and told me how hard he knew this is for me, and how if I had gotten anesthesia, to get a certain kind. He said he knew what it was like, and I will be just fine. Andrea texted me the next day not only to ask me how it went, but to inform me Ted has been continuously texting her to see how I was doing. This was also days before Zoe, his twin sister, told me that after their uncle passed away from a sudden heart attack, she had an ache in her heart that was lessened because of knowing me.
If there’s anything you can take from this whole thing, it’s this: yes, you should you be appreciative of the things you have, and the consequences you may not have to deal with if you are one hundred percent healthy. Also, yes, maybe to pay better attention to the illnesses you do have to deal with, and to see the blessings in disguise. However, it is much more than that. It’s to recognize the importance of children.
Children are the most precious gift and are our only hope to making this world a better place.
The next generations are the ones who will make a difference, and who we can instill good morals and values in while we have the chance. More specifically, these special circumstances earned Teddy the title as New York State’s Champion Ambassador for Children’s Miracle Network hospitals. Teddy is a survivor, and that is something to be celebrated and honored. He is a child with the kind of optimism you’d expect someone with the best of circumstances to have. He is well beyond his years, and it is clear to me that as we get older we become weary and become limited. Although Teddy’s condition comes with some limitations, he does not see them that way. To him, the possibilities are endless. It is a blessing to have the kind of outlook Ted and his family have attained from this life altering experience of having to deal with such a devastating condition. I’d like to also say thank you to Cohen’s Children Medical Center for the constant support they have shown Teddy and his family, along with the thousands of other children who are survivors, and in my eyes, our heroes.