I read the above line while perusing blogs written by people with dis-abilities (primarily autism).  I’m always on a quest to better understand my sweetie and what motivates her, what makes her feel comfortable in her own skin, what makes her feel confident.

I remember getting one of the best pieces of advice from Lily’s very first ABA therapist, Ann, shortly after Lily got the autism diagnosis.  She told me something along these lines… “Lily needs time to be Lily.  If she wants to flap her arms or stim in any other way, give her the freedom to do that.  It is a part of her and you want her to feel completely accepted.”

I completely accept my child, stims and all.  I see her as an asset – not just to me, but to everyone she touches.  She has made my life so much more meaningful.  And I’m so very proud of her.

I’m also lucky that she’s surrounded by amazing therapists who see past the Rett and the stims.  They all see a smart, sassy little girl with a great sense of humor who loves to be tickled, sung to and danced with.  They see a child who is quick to learn, and they realize that there are some days when L just doesn’t have the capacity to do certain things, even though she really, really wants to.  I know that one day, she will be able to do anything she wants. She is THAT determined.  (So am I.)

Supergirl!

I just wish the village in this photo lived a little bit closer to me and L…

This past Sunday, friends and family from all over the country joined me and Lily – and countless other Rett families – to raise awareness, and funds for Rett Syndrome.  I kept telling people this was like the wedding reception I never had.  Except it wasn’t a wedding reception.  And we came together for something I wish never existed. But wow was I glad we came together.  There was so much love.  So much laughter.  So much acceptance.

I was overwhelmed.  Lily was overwhelmed.  We both cried that day.  For different reasons. Though L loves the outdoors (you should see how she stares up at the leaves on the trees during our evening walks), I think she didn’t love the crowds.  And wow, our family is a crowd.  So she needed a lot of consoling throughout the walk.  She cried a bit.  And sometimes, when she’s overwhelmed, she falls asleep.

For me, the tears came from seeing all those Rett sweeties, knowing full well the struggles that these girls, and their families go through, the fears that I have for Lily’s future, the loss of what I thought Lily’s life would be like.  But there were equal amounts happy tears – family reunion!  There were people there that I hadn’t seen in YEARS.  People who flew in from Florida, drove up to 6 hours to be there.  For me.  For Lily.  For us.

Thank you all.

Sending love,

C and L

It’s my party and I’ll sleep if I want to.

Team Lily NJ Strollathon 2014 – Top Fundraisers!!