Tuesday, June 2, 2015

Easy to Love You

If there's one constant with Josie, it's that everyone who meets her falls in love with her - instantly.

My post title is a Grateful Dead song. "You don't know how easy it is.. You don't know how easy it is to love you."

Oh, but Josie knows. How could she not?

Speaking of those who love this little girl, her soon-to-be 11-year-old cousin, Macy, leads the pack.

Yesterday, Josie and I had a Skype call with Macy's class. Macy has been talking about Josie all year long. She wrote an essay about Josie, made Josie her "Time Person of the Year," created a logo for Foxg1, and honored Josie by holding her Foxg1 banner while running a lap with her class.

I would have loved to bring Josie to Macy's class rather than Skyping, but that would take away from Josie's therapies, so once again, we thank technology for these incredible connections we make.

Each student asked questions, and such great questions. Not that I think there are any bad questions - there is no judgement in curiosity.

"If Josie can't talk, how do you know what's bothering her?" "What is her day like?" " What kind of medicine does she take and do you know if she doesn't like it?"

I love answering questions about Josie. I've noticed as my friend's children are getting a little older, they have questions for me, but they're not sure how to ask. Most adults are hesitant to ask.
For the record, I welcome them all. I love to talk about Josie and to teach anyone, children especially, that it's ok to talk about the fact that Josie is different. At the end of the day, I believe we're helping so many people learn that we're all dealt a different deck of cards in life. I explained to them that we're not sad, we're inspired because Josie does and will continue to amaze us.

I think that the people who have Josie in their lives are much better for it. I really think she touches people in a way that can't be put to words and she makes people slow down and gain perspective. It's just so easy to love that little girl.

Macy's essay:
January 13, 2015
Macy Millones

If you had a super-power, what would it be and how would you use it to make a difference in someone’s life?

If I had a super-power it would be the power to cure every disease or medical condition or just a plain old sickness in the world. I chose that super-power because my cousin has a neurological genetic disorder called FOXG1 Syndrome that impacts her ability to walk, talk or crawl. She is three years old and cannot do any of those things, but I have high hopes of finding a cure. I try and help in as many ways as possible such as doing fundraisers, spreading awareness, and much more. I love my cousin and hope that she can have the same experiences as I do in life. I hope that she can share my love of using words in poetry. Not only would I use my super-power to cure FOXG1 Syndrome, but also I would use it to cancer, ALS, cerebral palsy, Parkinson’s disease, diabetes, and many more diseases. I hope that this super-power becomes real one day. I have faith.

We love you, Macy!