Tolerating

[caption id="attachment_2147" align="alignright" width="300" caption="Ellie not at physical or occupational therapy"][/caption]

This summer we signed up for Physical Therapy and Occupational Therapy at a local hospital because our hospital was completely booked.  Every week we would traipse to both therapies on different days.  The thing that struck me was how the therapists who worked with Ellie really did not seem to have any connection with her whatsoever.  Not that they were unkind, they weren't.  They just didn't seem to "get" her like some people do.  Rather, they seemed to tolerate her.  I finally got to the point where I was tired of being tolerated and it was at the point where Ellie really didn't have enough energy to do much besides go to the therapies that I finally gathered my courage and bailed on the whole thing.

Then we went to register for school and we walked in and several people came up to Ellie just to say "hi".  Some others listened to Ellie as she explained Jabool (Joy + Button + school), and taught them many of her words.  It was phenomenal.  And I thought, "See this is what

[caption id="attachment_2149" align="alignleft" width="300" caption="We much prefer, Hug Therapy..."][/caption]

I'm talking about!"  At her school and at the hospital Ellie is treated like a super star.  People at these locations authentically enjoy interacting with Ellie and can see the many gifts she has to offer.

A week later, Ellie, Ben & I were at Willy Street Co-op when Ellie started having a seizure, it was small and she was able to come out of it on her own.  Then she had another one on our walk home.  For some reason, my response to Ellie having a seizure is to talk MORE LOUDLY to her.  Probably because once when she started going into a seizure a voice inside my head shouted, "NO YOU STAY HERE WITH ME!!!"  And suddenly she came out of it.  As if  that yelling inner voice really worked.  Weird, huh?  So maybe that is why more recently I have begun to actually talk more loudly when I see her

[caption id="attachment_2150" align="alignright" width="300" caption="Or swim therapy, perhaps?"][/caption]

disappearing into a seizure.  Anyway, we  (and by 'we", I mean Thom, aka Dr. Daddy) phoned our endocrinologist to tell her we wanted to get Ellie's sodium level checked (lowered or dropping sodium can cause a seizure), well the endocrinologist wanted us to go to the hospital immediately.  The whole point of this story is to say that we ended up going to the hospital.  As we departed the elevator, Tina, one of the child life workers we have known since Ellie was 4 years old was standing there.  Her face lit up when she saw Ellie and Ellie immediately began telling Tina of her latest word creations.  Tina and one of her colleagues listened intently, having a great time with all that Ellie had to share.  Before they left, Tina told her, "I could just listen to you all day!"  It was like they really GOT Ellie.  That is the BEST and how could I settle for being tolerated after that kind of treatment?  But I suppose the gift that comes out of feeling tolerated is true appreciation for those times when Ellie is not.