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What I'm Thankful For as a Dad to a Son With Phelan-McDermid Syndrome

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I am thankful for many things today. But I’m particularly thankful for every hour of every day I have had the opportunity to spend with Olie.

When we became aware of Olie’s condition we did not know what to expect. I did, however, commit to accepting Olie for who he was, to not waste a single day with him, and to cherish every accomplishment he ever made – no matter how small. We heard it all from Olie’s doctors: He won’t live past 2 years old… he will never sit up on his own… his cognitive development will never exceed that of a 1-year-old. Over the years, Olie kept surprising us and kept reminding us that some milestones are more important than others. At less than six months he survived his first surgery – a mandibular distraction to correct a recessed chin. Olie struggled through a very rough 36 hours of recovery and graced us with his beautiful smile for the first time days later.

Time after time – surgeries, hospitalizations, and ambulance rides – Olie always bounced back with his same exuberance. I do not have enough resources to give Olie everything he deserves. The world does not have enough resources to give Olie everything he deserves. But somehow, this didn’t mean anything to Olie. He still perks up every time I come home from work. He still shows off his toothy grin every time I pick him up.

What I finally came to realize is that Olie made the same commitment to me that I made to him. He has never blamed me for not being able to being able to make his stomach work, or not being able to make him walk, or not being able to give him back that crucial part of his 22nd chromosome that I took for granted for much of my life. After almost every setback Olie bounced back with his same enthusiasm, charm, and love for his family and life. Never holding a grudge against me for not being able to help as much as I wish I could or for even making him go through a procedure that we could only assume he wanted in the first place.

I doubt I’ll ever meet a more perfect soul.


Oliver is 5 years old and lives in Atlanta, Georgia, with his mom, dad and 3-year-old brother Owen. Oliver has Phelan-McDermid syndrome and was recently diagnosed with leukemia. Home on hospice, his family is focusing on his comfort and happiness.

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Thinkstock photo by Halfpoint

Originally published: December 26, 2016
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