Archives for the month of: January, 2014

Eight Today!

When I saw the pediatrician a few weeks ago with Graham he commented that Grace’s birthday was coming up.  “She’s going to be 8” I said, “can you believe it?”  I went on to say “It feels like so long ago that this all started.”  He replied, “But sometimes it feels like not so long ago at all.”

It does seem sometimes that Grace is just ancient – wise, stubborn, unafraid to tell it like it is.

And when I think about the army of people it’s taken to get her here, surely she has to be older than 8!  There are days it’s lonely being Grace’s mom – and sometimes on those days I picture them- Grace’s army.  Doctors (so many doctors), surgeons, nurses (home, school, doctor’s offices, hospitals), receptionists (that know me just by the sound of my “hello”), aides, lab workers, schedulers, x-ray technicians, EEG techs, dietitians, physical therapists, occupational therapists, speech therapists, teachers, bus drivers, orthotist, case managers, social workers, volunteers in the church nursery, a basset hound, a few horses, Wesley Woods, a hair stylist, pharmacists, ballerinas, baseball volunteers, wish granters, pink helmet makers, medical supply providers, family, friends, neighbors, co-workers, her classmates, the man and his team who built our house.  I’m sure there are people that I am forgetting.

I’m grateful for them all – even the ones who caused me stress at the time.  Together we are growing an amazing girl.

In her eighth year we are not anticipating any major medical needs.  (Sigh of relief).

We plan to work on communication.  15 words in particular.  Mom, Dad, go, more, done, my, up, in, on, play, get, off, want, down, and turn.

We are going to keep working on walking and getting up and down from the floor independently or with minimum assistance.

We are going to swing outside.

We are going to take her on bike rides.

She’ll dance, play ball, and ride horses.

She’ll be at school.

We will try and find new things to try.

We will have good days and bad.

Maybe a few people will be added to the army.

As of 10:16 tonight she’ll officially be 8.  (Deep breath)  (Sigh)  Our little girl is growing up.



Today I’m sad because it doesn’t make any sense for me to buy an American Girl doll for Grace.  Grace has a few dolls.  She chews on them.  Bonks them in the head.  Flings them around by their feet.  Her brother has shown them much more kindness than Grace ever has.

American Girl sends us a catalog every now and then.  Most of the time I just try and throw it in the recycling bin without even opening it.  Today I opened it because the doll featured on the cover looked perfect for Grace.  She is a blonde-haired, blue-eyed, ballerina.  She’s only available in 2014.  This is the one I could have justified the expense for.  It is sooooo Grace.

Grace and I could have talked about which accessories would be the most fun.  Grace could have had pajamas that matched with the doll.  We could have gone to the store at the Mall of America and picked her up.  We could have done everything girlie associated with that.  I can picture how I would have wanted that to go in my head.  It’s just not that way though.

It’s a similar disappointment to the one I experienced when Grace got off the ketogenic diet.  I could finally paint her little toenails!   I bought a beautiful, shiny, pink for her little feet – but when I sat down to do it… she hated it.  I painted two toes.  It looked like the polish had been spilled she had moved around so much.  I gave up at that point.  My desire was her torture.

When she went to sleep that night I removed the polish.  Until now I don’t think anyone else ever knew it was there.

I know it’s not important in the grand scheme of things.  It’s just not.  There’s so much more to the whole mother/daughter thing.

But it’s a reminder.  This thing that hits you every now then like you somehow forgot that the daughter you have isn’t the daughter you imagined years ago in those first few moments when they said “It’s a girl!”

What’s important is that today – this same day I’m sad- Grace has made me laugh and smile several times.  We took in a show at the Civic Center.  We watched a little My Little Pony, had a snuggle on the couch, and I kissed her goodnight on her cheek before she got tucked in.

I think we are going to buy the books about the doll.  We can read them together and that will be our American Girl experience.    That too I can picture in my head – and I can make it happen.

Jan. 11 2014



I was listening to my ipod today in shuffle mode. Ben Folds’ “Gracie” came on.

It’s a song about his daughter..her growing up.

It was the end that really got me – he sings

“there will always be a part of me, nobody else is ever going to see but you and me, my little girl, my Gracie girl”

I got to wondering what part it is of me that my Gracie sees when the two of us are alone.

Sometimes it’s my frustration that I’ve been peed on- again.

Sometimes it’s kisses on her cheek.

Sometimes it’s tears.

Sometimes it’s singing in her ear.

Sometimes it’s a prayer.

Sometimes it’s me telling her it’s going to be ok.

Sometimes it’s me saying “ I got you, I got you, I got you” as we wait for a seizure to pass.

Sometimes it’s me begging her to cooperate.

Sometimes it’s me telling her how much I love her.

Sometimes it’s just quiet- a snuggle- the longness of her body somehow still fitting into the shortness of mine.

Sometimes it’s me telling her “I’m almost done- I promise” as I comb her hair or brush her teeth.

Sometimes it’s me asleep beside her.

My Gracie has seen me:

Desperate and sad.

Brave and confident.

Madder than I ever knew I could get.





Laugh with pride.

Experience wonder.

Experience grief.

Embrace quiet.

Experience love.

Experience doubt.

Try, and try, and try again.

I value very much that part of me that Gracie sees that no one else does. My thanks to Ben Folds for pointing it out.