She is Williams Syndrome........

This is how our 8 year old tells anyone feeling the "wrath" of Da Lila. I rarely post of just Williams Syndrome but it seems that some people I become friends with feel they don't really know me since I say "I have two children", not two children 1 typical and 1 with a disablity. Its almost comical like I am being secretive and I am a mystery. So maybe I should say I have Ava a warm blooded young human and Lila is a Williams syndrome. uuuhhh yea.



So for those of you happening onto my flowering path be warned. I have a child with a disability, if you must run please do so now and in a orderly fashion...BUT before you go just consider what you are missing, she is a true joy and a giver of all things fun and lovely.

Its not like I don't "see" Williams Syndrome cause I certainly do. Williams has changed our lives, at least what we thought our life would be like, I don't think we ever kidded ourselves that we would have a pristine little existance, but my version didn't include a child with a disability. I remember sometime after the diagnosis as I was questioning the universe, my husband saying "didn't you ever think our child could have a disability"? Uh what? Hell %@^# NO. We went through genetic testing and amnio, i thought i had it covered.

Lila does have a lot of the issues WS children deal with but by and large has been spared some of the very serious medical situations. Looking back it was so overwhelming with all the "some thing is not right" thoughts that I might have gone insane if not for our Ava. My husband and I were so busy with Ava at 2 years old, our jobs and then my mother becoming more medically dependant that we just kept putting one foot in front of the other. Now here we are 6 years later. I know I missed a lot of the "firsts" that both my children experienced due to being caught up in just getting the right therapies and appointments etc. I think that is the only thing I would ask to have as a DO OVER.

A lot of people are enpowered just by having children but when you have a child with a disability you have to grow at least 5 feet taller and get some thick skin that even the HULK would be envious of. For those of you just starting out it's gonna be scary, anything unknown is scary and even when you know the beast by name you still get the c*%#@ scared out of you with every new arm and leg it grows. What I do know is........

• Ava is no less important then Lila. You either figure out how to calm two crying kiddos or just start crying yourself. I pick up Ava from her tutoring it can be a pain for my schedule but you know what? That is the time for just her and I. We chat in the library, pick some books and reconnect. She is an awesome kid and is so often overshadowed by the popular and loud Lila.


• If any "professional" tells us No they better have more then "that's the way we do it here" for an answer cause that does not fly with me anymore (husband is still learning:).


• I will say I am sorry when I truely am, not just to appease someone or start a request with it. I will say that was hard for me to do, it would be "I am sorry but that doesn't work for Lila". Now it is "This will not work for Lila so lets figure out something what will".


• I will tell a child to "straighten up and back off" when needed and I don't care if I didn't give birth to the little angel (que dripping sarcasm).


• I will ask for an explaination and if I still don't get it, someone will have to repeat and repeat again or get someone who can explain it clearly.
• I seem to automatically ask for a copy of any results regarding my kids. I am super at making tabs and now how a book of Ava as well as the 6th edition of Lila.

NOW THE NUMERO UNO!!!

I am no longer embarassed to have all the contents of my purse spilled out for all the world to see, as I try to unfold a umbrella stoller with a crying kid, in a busy parking lot and all the while holding in my urge to pee.

~Tes