The Power of Yet

When Jack was diagnosed with NKH, we were grateful for the speedy diagnosis but our hearts broke when the doctors explained what we could expect from this disease. If you’ve heard Joe speak at any of our fundraisers, you know we were told that there is no cure and that Jack wouldn’t walk, talk, crawl, smile, laugh--you get the picture.

Since his diagnosis, Jack has been formally diagnosed with a global developmental delay, hypotonia, and cortical vision impairment. Each week he has vision therapy and occupational therapy through early intervention, private physical therapy and speech language through Boston Children's. In April, Jack will be starting music therapy and aquatic therapy.

It's a lot BUT it is so, so worth it.

Is Jack crawling? No, not yet. Can he hold his head up on his own? No, not yet. Is Jack talking? No, not yet.

That three letter word, "yet", is SO important. Three letters is the difference between feeling hopeless and hopeful in the face of a devastating diagnosis. That little word has the power to get us through our days.

Since September 2021, we have surrounded Jack with teachers, therapists, doctors and nurses who, like us, believe in the Power of Yet. Jack's amazing team does not expect any less of him because of NKH--they push him and get him to work hard, even when he doesn't want to.

On top of Jack's immediate care team, we have come to meet the amazing doctors and researchers fighting for a cure for NKH. When they speak, their message is that we don't have a cure for NKH yet, but they're getting there.

Take the word yet out of a sentence and all feels lost, your work feels like it's for nothing, struggles feel insurmountable. Put it back in a sentence and it's magic.

That three letter word might just be my very favorite.