Almost exactly four years ago we found out during our second pregnancy that our baby boy, Joseph David, had Down syndrome. We had a prenatal diagnosis and to this day I will never forget the geneticist telling my husband and I that our son did indeed have an extra 21st Chromosome. Trisomy 21. Down syndrome. Words I had never thought about before.
At the time and for a long time after I remember worrying, worrying and more worrying. Worrying about things that I had absolutely zero control over. In some cases I felt like I was worrying just for the sake of worrying. I was worrying because somehow I had gathered from society that I should worry. How would we raise a child with Down syndrome? How would he get along with his brother?
I worried about whether he would ever date. Ever get married. Ever get a job. Would he have friends? Would he need more care and more love than I could provide him with? Would he be funny? Have a sense of humor? Fit in our family.
My worries came in all sizes. Large and small. They were never-ending. Exhausting.
And a complete waste of time. Oh, the time I wasted worrying. The nights I would lay in bed and worry and wonder what in the world would happen to this child of ours.
The energy I spent was endless. I worried and worried and worried.
What we learned was that the worrying was pointless. Every little moment spent wondering and worrying was time that was wasted and that I could never get back.
Today we practice a different approach to raising Joey. It's called living in the present. It's called being present. It's about enjoying Joey where he is right here and now and trying our very best not to worry about tomorrow, next week or next year.
Instead of worrying we focus our energy and life towards helping Joey be the best he can be. We do Physical Therapy, Occupational Therapy, Speech Therapy, Horse Therapy, Swim Therapy and we just added Music Therapy to the mix. We try to expose him to the world and help give him opportunities to socialize and just be a little boy.
Instead of worrying we devote our family to advocacy for Down syndrome and to helping raise awareness by volunteering for organizations like Stand Up For Downs, and Buddy Up Tennis as well as other organizations like The Up Side of Downs and United Disability Services.
Instead of worrying we work on helping the world and the community realize that individuals with Down syndrome can do anything! Hold jobs, get married, workout and so much more.
Instead of worrying about if Joey will ever have a job, I daydream about where he might like to work.
Instead of worrying about if Joey will ever start to walk on his own, I daydream about when he starts running and I have to chase him.
Instead of worrying about if Joey will ever be able to fully talk and communicate, I daydream about the funny things he will say.
Instead of worrying- we are living. We are celebrating World Down Syndrome Day 2014 and we hope you will celebrate with us. Thank you to everyone who helps make our world a better and more accepting place for individuals with Down syndrome every single day.
To every single person out there with Down syndrome- this one is for you! Happy World Down Syndrome Day!!!