As you know, a few nights ago there was a fundraiser for Rett Syndrome here in New York City.

For this years event I brought along Lily’s team of home therapists as they are the driving force that helps my kid maintain, and gain, basic skills. And they are so deserving of a fun night out.

A mighty team!

And we had a fun time! What made it even better was that my brother Matt came to the event (he was up in NYC for work this week). But… But… The word ‘victim’ was used to describe girls with Rett syndrome during a speech. And wow did it rub me the wrong way.

My child is not a victim. She is an amazing individual who overcomes – on a daily basis – obstacles that would be unimaginable to most. I see her as a hero. I see all our Rett sweeties as heroes.

I know that the presenters of this speech were not meaning to offend. I wish they would have spent more time focusing on all the amazing things our girls can do and all the wonderful things they teach us. How they inspire every single person they meet and how they light up the lives of their families and friends. That would have been the perfect thing to hear.

Anyway… Thank you to those who contributed to the event. Every dollar brings us one step closer to a cure. And we are so close!

I wonder where Lily gets her silliness from?

In the world of Rett Syndrome, there is a “professional” called a ‘Rettologist’.

She is an integral part of the medical team because she knows her patient like the back of her hand. She is her advocate, her physician and her therapist.

She is the 24-hour nurse on duty, the domestic helper and her cheerleader.

She can be a psychic with an invisible crystal ball.

She can read lab results and know when something is just… off.

She learned the medical world not by choice but by experience – pretty darn fast – and embraced it like a pro.

She is a lawyer because she represents her daughter’s best interest.

She is also her daughter’s friend, best friend actually, sometimes feeling like her only friend…

She has the faith of a preacher and the passion of a rockstar.

She has a subconcious clock that ticks in time for diaper change or feeding or medicine time.

She has to be sharp as a butcher knife, but trust her insticts too.

She feels what her patient feels, and every tear that falls from her patient is like a stab of a knife in her heart.

She’s not perfect.

She gets angry or irritated easily, especially with anything that affects her patient.

She draws her strength from every smile from her patient, from every word of encouragement from family and friends and from every ounce of support from her community.

She belongs in a society of closely-knit women, bonded like soul sisters.

The child of one is the child of all.

It was not their choice that they are called “strong”, but fate chose them to bear, nurture and care for the brave warriors.

It is from their sisterhood that they share knowledge, stories, tragedies and victories.

The way they love is extraordinary.

– Credit to Mimi Burke​, Rett momma extrodinaire, for writing this piece.