Archives for the month of: May, 2011

Today Grace wouldn’t work for shiny beads, crinkly paper, or any of her usuals – today she would only work for a book.  Grace has always loved books – granted sometimes just to chew on – but she loves to be read to – and to look at books – we always have one with us.    I tell you this today because its added to my confusion.  Grace didn’t qualify for summer programming through school because she is doing so well.  ( I’m very proud of her, don’t get me wrong – but we have a ways to go….and I consider a lack of summer follow through a potential for not growing in the right direction).  I know its not all about school.  I know that Kevin and I have a role to play – but are we letting her work on goals that are too easy?  Should we be pushing her more?  We’d decided on one more year of preschool – but this has made us question our decision.  If she’s ready for a full day of learning we shouldn’t hold her back.  Do we need to rush her?  Would it be rushing her?  We won’t ever know.  There’s always an element of guess with Grace.  School decisions weigh mightily on Kevin and I  – in a different way than handling medical decisions.  Medical decisions in a way seem time-bound, and we can adjust if something isn’t working.  School doesn’t feel near as forgiving – near as flexible.  Tomorrow morning I meet with her special education teacher – I don’t expect her to have answers, but I need to know more.  I want what’s best for Grace in a way more powerful than I could ever write or explain – being her advocate, a force, her mom – this seems to be a really important time.

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My dad, Kevin and I spent a good deal of time yesterday at our Carpenter House – we planted some flowers, did some yard work, washed some windows – and actually took back some pictures of Grace to hang up.  It was so wonderful to be there.  In some ways it still feels more like home than our new home – the neighborhood noises, the way the glass on the front door squeaks in a spot when you clean it with windex, the flowers out front (see picture with Hoover), the trees in the back yard.  I thought about bringing Grace home from the hospital to that house – and how we thought Hoover was so bravely watching out for her – only to learn that he was afraid of the balloons we had in the living room.  I thought a lot about our neighbor Suzi – and how much we miss her.  I was in that house alone with Grace on a Sunday morning and had to call 911 because I couldn’t get a seizure to stop.  The doctor was yelling at me on the phone to use a medicine I’d never heard yet – now I don’t leave the house with Grace without it.  I called Suzi right after I called 911 to come take care of Hoover and to shut up the house as we left.  She arrived in two seconds – and I was so grateful.  I’m not yet sure who I’d call in our new neighborhood – I need to introduce Hoover to some more people evidently.  I even found myself longing for the front step.  Grace and I used to sit there in the spring and watch the neighborhood bloom.  As I thought about how I missed the front step – that was reminder – the reminder of why we couldn’t stay.  Grace couldn’t navigate that step or any other – as much as I may miss it – Grace is what counts.  Trees will grow at our new home, the neighborhood noises will become more familiar, and Grace and I can sit in a chair to watch the neighborhood bloom.

We were there yesterday because there is an open house today.  Our realtor has in this week become part of Team Grace.  (the group of people who keep Kevin, Grace, and I going- it’s not a formal team – there’s no uniform – its more about how these people affect our hearts)  She and her company have agreed to give their commission from the sale of our home to Dance Without Limits.  How cool is that?  I just can’t fully get my mind around that kind of support – I am so grateful – and touched.  During the open house today – Grace will actually be dancing – rehearsing for a one time performance with others from her class to participate in the Ballet Des Moines recital next week.  I guess it’s true the words to the song Grace will be dancing to – a word is just a word until you mean what you say – and love isn’t love until you give it away……

Joy