Archives for the month of: January, 2013

I gave her medicine this morning. At 6:15 am the goal is to get the medicine in without waking her…this is not always easy. This morning after I got the medicine in her I just sat for a few minutes watching her. Heart pajamas. Lalaloopsy blanket. Stuffed toy horse watching over her. Ponytail scattered. Little hand tucked around her cheek. Beautiful and sweet. I couldn’t help but kiss her on the cheek and whisper to her Happy Birthday and I love you!

I thought about having her. Kevin and I watched the movie Dave the day we had her. The last scene I really remember watching was the one where Dave and the First Lady have packed their bags to leave the White House forever… but they eat sandwiches and decide to stay…to do what they can do.

I have never wanted to pack my bags and sneak out in the night. I understand though the part about wanting to do what can be done.

I want so much for Grace! Today was part of it. People sang her Happy Birthday. She got hugs. She got cards. She got books. We elected to skip the smooshing of the birthday avocado, because she will be off the ketogenic diet in a few weeks and she can have cake!

I’m hopeful that seven will be a good year. Grace has been showing some spunk…some attitude even. We don’t know if it’s school, or Graham, coming off the diet, the new meds or what…. But something has sparked her and it is really fun to see.

She still has seizures that I don’t like. Communication and finding the best way for her to communicate with others seems like the goal that just keeps growing.

The gap between her and her peers continues to grow.

But as I write about those challenges I can’t help but think about this morning. Heart pajamas. Lalaloopsy blanket. Stuffed toy horse watching over her. Ponytail scattered. Little hand tucked around her cheek. Beautiful and sweet.

We made it to seven. Kevin and I better find some sandwiches and figure out what we are going to do next!



DSC01064When we started Dance Without Limits with Grace we had no idea what we were walking into. Our intention was for Grace to experience dance. For her to have that kind of normal. We got so much more than that. We’ve known that though, but this week – this week- we realized that it’s even more than we knew.

One of Grace’s fellow ballerinas passed away this week. She was just one day older than Grace and she has been in Grace’s class at least two times. She danced in a piece of equipment that supported her so that she could focus on the dancing. She figured out how to put her hands on the handles, and swing her feet – her own personal swing set! Oh how she loved to swing herself. She’d smile…and because she knew she technically wasn’t supposed to be doing that she smiled even bigger! How can you not admire that spunk…or find it unforgettable? Her mom and dad were constants, and her little sister loved to dance beside her. They – like us- were doing it! We would talk about housing accommodations, wheelchairs, special ed, diapers, pooping, doctors- real stuff, personal stuff, and until this week I couldn’t have told you their last name with any sense of certainty.

The two young girls – her “big ballerinas” – were super- attentive. They always greeted Elizabeth with such enthusiasm and worked so hard for Elizabeth to dance.
It was impressive. And they made it look so easy (like Jacque, Jill, and Chloe do for Grace) that it is easy to gloss over the effort they so completely gave.

When we found out Elizabeth had passed away there was a period of silence in our home. My heart hurt for her parents, her sister, her big ballerinas. I prayed. I cried.

On Friday night we took Grace to the visitation. Elizabeth’s mom greeted her, gave her a kiss on the cheek. Elizabeth’s dad also bent down to address her directly and thank her for coming. I had worried about whether or not to take her – but she was welcome there. I also believe Grace had her say about Elizabeth during the visitation. As we sat with Elizabeth’s family and friends at the service that night, my normally quiet Grace made a few noises. Not so loud as to disrupt, but loud enough that Kevin and I looked at each other, smiled, and gave each other the look…that says “What can we do?”…Grace is Grace.

Today at the funeral Elizabeth’s dad had written some comments that were read by her grandfather. Included were happy memories, thanks, funny moments, and lessons learned. I could relate to what was being read in many, many ways.

Dance has not only given us something normal for Grace. It’s given us a group of people who can relate to our normal. This is a gift not to be overlooked.

Miss Monika and Ann who came up with Dance Without Limits…Monika called it “their silly little dance idea” sometime this week- didn’t see the community in their original visioning, but it was a side effect – and one I am quite grateful for.

My heart still hurts for Elizabeth’s family. I continue to pray and think about her joy at figuring out how to swing!