Archives for the month of: May, 2008

A little boy asked me that question tonight.  We were at the Epilepsy Foundation meeting.  The speaker had been up front a little more than half an hour – Grace was getting restless.  I got her out of her stroller and she proceeded to crawl across the floor, lay down for a rest, touch the walls, tried to pull herself up on a chair with wheels – but figured out that wouldn’t work.

A boy came over to play.  Police car in hand.  He would zoom the car by Grace crawling on the floor.  She would crawl after him.  If she got too near he’d zoom the car a little faster.  At times Grace would find something else to do – but always she would return to the car and the boy.  He made direction changes – and she followed!  She crawled up close to him to look at the police car he held in his lap.  She placed her two year old Grace teething goo drenched hand on his cheek…. and that’s when he asked me the question.  I said – she wants to be your friend.  He asked if she could talk… when I said no he asked if she could nod….. again I said no.  Then he took off with the car – Grace in tow.
Thank you God for boys who wonder aloud about why a girl wants to get them germy…. and then continues to play.  Seriously….thank you!  Love Joy

Yesterday was one of the tough ones.  Yesterday was Grace’s annual review for Early Access (her therapy services provided by the school system).  Our living room was full with her team.  A packet was handed to us- it described to us Grace’s “abilities” – 3-6 months seemed to be all over that paper – the phrase scattered up to 8 months made me breathe a sigh of relief.  Each team member then proceeded to tell us that they think they will be cutting services to Grace because she’s doing so well.

Well?????  Functioning at a 3-6 month level at over two years is well????
It’s such an unfair process.  We didn’t have the info before, we couldn’t prepare.  The questions I had prepared no longer seemed relevant.  Why don’t they give it to you a week before?   It’s one thing to know that Grace is behind, it is a whole other thing to have it appear on paper… be given a few minutes to review it, and then asked for questions.  And in your own home…..  I wasn’t wearing shoes…. I should have been wearing a “power-suit.”
Had our team lost hope?  Did they not love Grace?  Do they not believe in her?  Are we just their job?  I’m not giving up….. were they?  I cried.  I cried all the way back to work.  I tried to concentrate.
But as always it only took a little time with Grace to realize that it is my job to be Grace’s advocate, my job to be her constant, my job to encourage, dream, and cheer.  I only have to do that —  ultimately what that paper says does nothing to define my daughter.
And as if Grace felt she further needed to teach me, as she and I shopped last night at the grocery store, in the vegetable section, Grace on my hip, swinging her legs… she happened to kick over a pole that holds those plastic bags for your vegetables and fruit.  Anyhow, the roll of bags went flying the pole made a big noise – and a woman came rushing over to help me.  She pointed at Grace- poked her in the tummy and looked at her warmly saying…. you did this didn’t you!  I wanted to yell — Yes she did!   I love her!  I’m so proud of her!  She’s my two year old!   Instead I said -Yup it was her – with what I imagine was a huge goofy smile on my face. That’s the story I will remember – that I will tell her – and that I will tell other people when they ask about her.

Grace has a move that we were informed is called “downward dog” in the world of yoga. (See picture of Grace’s interpretation).  Last night I was giving her a bath and she wanted so badly to do her downward dog in the tub. Grace is a girl with very few rules, they haven’t actually been all that necessary. However, as she sat there trying to catch the toys floating by we had our very first serious rules oriented chat. She proceeded to ignore me, and as I was finishing the talk–she did her downward dog in the tub. I just laughed and held onto her. I guess sometimes that is all you can really do. 

Thanks for listening!  Joy