The Miles Series 2/4: Loreni/Mom

(The Miles Series 2/4: Loreni/Mom)

"The country was going through its worst heat wave ever and few places had air conditioning. Miles stood in front of a fan, letting his body cool down. Waiters rushed in and out of the restaurant. Music played in the background, when suddenly “Beat It” by Michael Jackson came on and Miles was in his element busting out the moves. The bartender turned up the music. My husband, daughter and I joined in. And just like that, we had an impromptu dance party, in the middle of a restaurant in Bruges, Belgium. Some of the waiters joined in, handing us lollipops with huge smiles...and we danced. My heart exploded with joy and love because I knew we were exactly where we needed to be.

That’s the thing about life with Miles; it’s full of impromptu dance parties.

When he was born and I got the diagnosis, I refused to google any information about Down syndrome. It didn’t matter to me what others had to say about him, it only mattered who he was. So I blocked out the negativity and connected with his heart. I cried through the pain of the diagnosis while I nursed and cuddled my baby and got to know him.

It’s easy to get derailed by the challenging moments; to get overwhelmed by the details of his education, his therapies, his health. But when my head is spinning with anxiety and frustration, I connect back with who he is: a boy who loves to dance, play video games and sports. He is smart, strong willed, vulnerable, confident, strong. He has a wicked sense of humor and an enviable free spirit.

My life with Miles isn’t all difficult or all enlightening. It’s this lovely dance full of triumphs and challenges, where the most important thing is to be present, so I don’t miss the beauty of it all."

#ThisIsDownSyndrome #TheLuckyFew