This is the blog post I have wanted to write for a decade. These are the words I have wanted to shout out loud, but never, ever would have thought it possible.
My son, the boy who barely could eat anything for many years without fear, can now eat everything without hesitation. The kid who went everywhere carrying emergency medicines and his own snacks is now able to leave the house empty-handed at a moment’s notice. The child with Eosinophilic Esophagitis who had 33 endoscopies by the age of nine, is off all his medications and showing no signs whatsoever of disease. Instead he is thriving like never before.
Though the progress has been gradual over the last two years of treatments, today he officially “graduates” from the program that has given him freedom. Today is our 52nd trip from Philadelphia to Boston to see Amy Theiringer, a woman who is curing children like my own. Today I am feeling grateful beyond words and bursting with pride for all that we have accomplished together.
In the last 26 months, we have driven over 30,000 miles, and spent over 525 hours in a car. We have spent thousands and thousands of dollars between treatments and travel expenses. And I wouldn’t change a thing.
Given the opportunity, most parents would do whatever it takes to heal their child. My son is cured, and that makes it all – every mile, every moment, and every penny – worthwhile. I will forever admire fellow parents of children with extra needs, who live their lives in a state of high alert, and who don’t hesitate to go the extra mile (or 30,000 of them) for their son or daughter’s health.
As I write these words while wiping away tears, I know that this is the end of an era, and the beginning of a new chapter for both of us. My son’s chapter will be filled with pages about becoming a typical teenager, with tales of friendships, school, crushes, and sports. His will have no mention of what came beforehand, because kids are wonderfully resilient that way.
But I will know, every so often, when he quietly glances over at me. He will be thinking about the journey we took to get to normal. Our eyes will meet briefly – and we will both know.
One day I hope his chapters are filled with spectacular adventures. For today, I am beyond appreciative that he can revel in simply feeling normal.
Some people believe that “normal” is boring, or that normal should not ever be anyone’s goal. Though I understand the sentiment, I have to respectfully disagree. Sometimes normal is the most rewarding experience in the world.
Though it is uncomfortable for me to be staring ahead at blank pages, what will fill my next chapter is yet to be determined. After years of constant multitasking, planning every moment in advance and living life in a state of high alert, my reserves are somewhat depleted. I know that there will be more uphill battles to conquer in the future, and “whatever it takes” will become the motto once again. For now, only time will help me get back the energy and resolve needed to figure out what my next chapter may say. Only time will help me come to terms with ending an era that I had been programmed to believe would last forever.
One day I hope that my pages too are filled with spectacular adventures. I sure do look forward to writing them. In this moment, however, my plan is to revel in simply feeling normal.