Archives for the month of: April, 2016

EEG at NightA few weekends ago Netflix recommended that Grace watch “High School Musical”.

I was introduced to the movie when Grace was one. She was hospitalized for something like fifteen days as she began the ketogenic diet. The keto diet is a high fat diet that changes how things work in your brain because your body is getting its energy from fat.

It didn’t go well. It threw Grace’s body off. I was with her by myself for a lot of it because Kevin had started a new job. I watched the movie a zillion times it felt like. It was oddly comforting. The words to some songs really got me.

“This is not what I want, this is not what I planned and I just got to say I do not understand. Something is really not right. Something is really wrong and we’ve got to get things back where they belong”

“This is the start of something new”

And the ending song “We are all in this together.” I cried a few times listening to that one.

It wasn’t just the songs. The whole concept that you don’t have to be defined by any one thing is in there.

That movie takes me back to that time in a powerful way. My love for a little Grace, the desperation to do whatever we could, all the cuts on her feet to check blood sugars, my panic that this would be an option that would fail, the absolute wonder I felt when it turned out that if we added 1/16th of a teaspoon of Morton Lite Salt to the formula that she would be able to do it. That’s not much salt – but it had a huge impact. I remember how tired I was from fighting my own emotions. I spent so much time holding her on a hard plastic couch watching that movie where a happy ending was shared by all. It helped me keep going in some way.

We were back on the epilepsy unit this week with Grace. They’ve built a new unit since we’ve been there last. It’s beautiful. There are pictures of dancing all around. In our mind it is the place to be if you’ve got a tough kind of epilepsy. Things for Grace didn’t go as well as we’d hoped. Almost nine years after that keto diet visit I found myself again thinking…this is not what I want, this is not what I planned, and I just got to say I do not understand.

There is so much about Grace’s brain that is complicated. It’s easy to get caught up in that especially when things aren’t going the way that you want. It’s easy to feel like we are helpless and only able to guess at what may work because there are no answers.   Unlike the movie this won’t be quickly resolved, but we have a plan.

We won’t let her be defined by one thing. Kevin, I, her doctor, her nurse, her team at school, we are in this together. And there is a whole team of people who make sure there is music and dancing in her life. It’s not exactly a Disney movie, but it’s our story.

Joy

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IMG_2865Last weekend we took Grace and Graham to the Wellmark Family Series show The Cat In the Hat at the Civic Center.  We love the family series – we’ve been taking Grace for several years.  This is Graham’s second season.  The shows are an hour long –it’s $10 a ticket – and it’s all kids so you don’t have to worry too much about what random talking/noise-making your child does in the middle of a performance.

In the hour before each show the lobby is packed with crafts, music, and other activities for kids to do.  We’ve tried a few times with Grace but it’s crowded, difficult to get her through in her wheelchair, and the set up just doesn’t allow for her to participate as much as she would like.  We usually just skip the activities and go to the show because it’s frustrating to not be able to navigate with her and have her be able to be engaged.  Graham however has become wise to the fact that he is missing the activities.  We do have the option of taking two cars. (Which we’ve done.)  One of us going first to do the activities with Graham and the other following with Grace closer to show time, but I just didn’t want to do that on Saturday- I wanted us to go as a family.

So we got there and I tried to get Grace up to an art project table, but there were just too many people, and people didn’t really move.   (I totally get it…everyone there is trying to get their kid to the activities).

This time someone from the Civic Center (Susan) saw me walk away after trying and approached me.  She told me there were animals on the other side if Grace would want to see them.  I said “that’s ok, it’s hard to get her through all the people.” She answered, “I could help you.” I said “no thank you, I’m just going to feed her so we are ready for the show”.  Grace and I went to sit in the front window so she could watch cars drive by and I could feed her lunch.  A few minutes later Susan came back and asked me if she could get someone to bring a craft over to Grace.  I agreed.  She arranged for one of the Wellmark volunteers (Kayla) to bring over kite making supplies for Grace.  Kayla did.  She asked how Grace would like to decorate it. She made a few trips back to the crowded tables to get what we needed.  She helped hold Grace’s feeding tube so I could put the kite together with Grace.  She tied the ribbon on the kite.  She waited beside us when Susan came back with a woman from the zoo (I did not catch her name).  The woman from the zoo had brought a duck (Fiona, I believe) over to see Grace.  Grace wasn’t too sure about Fiona – but she checked her out.  Because of her lack of big emotion it was very hard to see that she did really give Fiona a good look – I think the three women around us were waiting for her to smile, which she didn’t of course.  But after she checked out Fiona I thanked the woman from the zoo and Fiona for coming to visit.  Kayla helped us finish the kite and we were set for the show.  I thanked Kayla and Susan.  Grace flung the kite around and tried to chew it as we waited for Kevin and Graham so we could all go in the theater.

I was totally tickled with the experience.  Grace really watched the Cat in the Hat.  She’d done the preshow activities.  Graham liked the show and had a fish puppet and a kite that he’d made.  He was happy.  We all got to talk about it together on the way home.

Those women saw Grace that day and wanted her to be able to participate fully.  I am crazy grateful.

Joy