The Power of “And”

I am going to tell you about my daughter Jojo. She is amazing. She’s 22 months old and has  a shock of white-blonde hair. She has huge, beautiful eyes. She has long, elegant fingers. She has delicious, gigantic cheeks. She has the sweetest disposition. She can be very discriminating and isn’t afraid to let us know when something isn’t up to snuff with her. She is lovely in every way. She can communicate a hundred different messages with her eyes and expressions. She is perfect.

And. She is imperfect. There it is – that magical word “and”. So much better than “but”. Because more than one thing can be true. More than one feeling can exist at the same time. I am hopeful and I am uncertain. I feel brave and I’m scared.I feel blessed with such a wonderful little creature, and feel like life has dealt her and us an unfair hand.

Jojo was born with hyptonia, which is low muscle tone. Her current diagnosis is congenital benign hyptonoia, and it will remain the diagnosis unless and underlying neurological or muscular problem is found. Because of this condition, Jojo has delays in gross motor, which impacts mobility and speech.  Jojo cannot crawl or walk. She babbles a lot and speaks in her own language but only has a small handful of real words. We can see her frustration grow as she approaches two years of age and cannot move around the world and keep up with her energetic brother.

Very little is known or written about hypotonia. I’m sure other families dealing with this have had the same frustrations we’ve had while trying to understand what is going on with our little girl and what we can do to help her overcome it. This blog is our way to keep friends and family informed on Jojo’s progress, and also to share our experience with other families who are dealing with hypotonia, or any development delay, special need, or condition that falls outside the bounds of “normal development”.