Thursday, February 16, 2017

Why Are People Committing to Eating Ice on February 28th?

Why would people forgo delicious treats and instead choose tasteless ice to eat on February 28th?

Its simple, because despite all of the negativity that we see bombarding our screens and filling up our minds, the majority of people are still good and caring with a deep desire to help each other.

Can you imagine living without tasting anything?

Let me introduce you to an amazing little boy that lives everyday without ever taking part in the most natural of all experiences. He lives without eating. At four years of age he lives only on a nutritional life support given to him through an IV, nothing enters his digestive system but ICE. 

When our family gathers around the table at mealtime, he sits and eats his ice, enjoying it as if it was food. Cohen reminds us everyday to appreciate the little things. He never complains, in fact he gives thanks for his ice before eating it and after each bite he says, "Mmm yummy."

February 28th is Rare Disease Day, a day set aside to remind the world that there are rare diseases equally devastating as many of the well-known ones. Most of these individuals have had long hard journeys seeking a proper diagnosis and still others, like Cohen, may never know the name of the monster that attacks their bodies. It takes an average of four to seven years to finally get a proper diagnosis and even then there is little hope for a cure due to that lack of understating of these illnesses.

As difficult as it is to imagine, there are people dying from diseases that cannot yet be identified by science or are far to rare to have success with research funding. Many of these people have been told, just as we have, that, "We are waiting for science to catch up."

Committing to eating ice may seem like an insignificant act of kindness to most people but to one little boy who lives life in isolation, it means a moment of inclusion. It will provide great encouragement to him and others who experience this kind of aloneness. If one person asks the question, "How can I help people living with a Rare or Undiagnosed diseases?" then this challenge was a success.

I remember living in a world where I didn't have to think about children suffering, nor watch friends anguish in silence. But that world is not the reality for the estimated one in ten people living with rare diseases. Let's make them feel valued on February 28th and break their silence. Eat Ice. Spread Awareness. Join the fight against Rare and Undiagnosed Diseases.

Take part in the, "I'm Eating Ice for Super Cohen" Challenge at Super Cohen's Crusade FaceBook Page

Get creative with fun ways to eat ice, post your pics and Cohen will be the judge on February 28th

Please visit  Rare Disease DayGlobal Genes or Rare and Undiagnosed Network for more information on rare diseases and how you can help.

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Thursday, February 2, 2017

Groundhog Day

Forget the little critter that pops it's weather predictive little eyes out of the ground to break the news of a longer winter to the world.  It's the iconic movie, Groundhog Day that fills the minds of my generation, when we think of Feb. 2.

Even the idea of repeating your BEST day, over and over again seems annoying and frustrating but living a bad day over and over again, seems unbearable.

Exactly one month ago to the day I sat in this very same surgical waiting room waiting to get my sweet boy back again. These walls are way too familiar, as are these feelings.

He is only 4, but....

14 15 times I have gone through Pre-Op evaluations with nurses and doctors.

14 15 times I have sat for hours playing and distracting him from the monotonous passing of time while we wait for our turn on the sterile stage.

14 15 times I have watched him bravely endure the details of this day.

14 15 times I have walked him through the cold double doors pretending to be listening to the small talk of the nice orderly.

14 15 times I have stood and smiled at a room full of blue hats and said, "No I don't have any more questions."

14 15Times I have watched his beautiful eyes roll back into his sweet head while he drifted off to assisted sleep.

14 15 times I have heard the words, "Don't worry mom we will take good care of him."

14 15 times I have kissed his little head and told him I loved him as I turned away, leaving him with a room full of strangers.

14 15 times I have walked down the cold hallway swallowing my tears, trying to pretend I was okay for the benefit of my concerned escort who asks, "Are you doing okay, mom?"

14 15 times I have felt an enormous lump in my stomach while I waited for his sweet little name to filter through the air for my turn at an update.

14 15 times I have been called into a little room to find out that we now have more questions than answers.

14 15 times I have waited to have him back in my arms, yearning for the moment that I get to stand by his bed while he slowly comes back to consciousness.

14 15 times I have wondered when does life get easier for my beautiful little boy.

14 15 times we have endured this Groundhog Day... we're ready for a new day.

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