Chasing Inspiration

Wednesday, October 16, 2013

For Grace

Gratitudes:
  1. Crisp autumn air that's just damp enough to be heavy with wood smoke, ripe fall apples, and nutrient rich earth ready to rest the winter away
  2. Fantastic medical facilities and the ability to utilize them
  3. Terrific pediatric specialists in said medical community
My gratitudes this week have been around someone near and dear to my heart, my good friend's daughter. Grace is a wonderful human being. Her heart is big, her creativity immense, her joy in the absurd a delight. For the last couple of years, Grace's brain has been in a decline and the true root cause has been unknown. You can read more about her journey here.

Thankfully, we live in a state that has some excellent pediatric care and Grace has been able to see some of the best of the best psychatrists and neurologists. And finally someone thinks they know the root cause to what has been going on with Grace's brain and body in the last few years. Right now Grace is at a premiere children's specialty care hospital for diagnostics. There is great hope that answers, if not found, will be much closer than they have been in the past. This is likely the beginning of a new phase in Grace's journey and it may be a long one, with more questions before there are answers. Journeys are like that, after all. Questions have to be asked in order to determine one is on the right path and heading toward the right destination.

We visited Grace last night. She was tired and adorable with all these electrodes attached to various places on her head. She's a newly minted teenager, so there was some hiding of the face in embarassment. I'm sure she didn't think she looked her best and that having electrodes attached to one's head in such a way that caused the most interesting of hairstyles can be mortifying. I know how I feel if I have bedhead and someone is at the door. Taking a cue from Grace, I stopped telling her how cute she looked, because she does look adorable, and started to ask her about her day, what videos she had been able to watch and how her time doing crafts went.

She's a trouper, Grace is. She's very aware of what's going on within her brain and how that's impacting her and her world. And yet she hasn't lost this amazing sense of joy. She sees her world and she knows there are things to be grateful for, and she has no problem, at least in my observation, in expressing that gratitude. I am awed by Grace every day, by her bravery and her curiosity and her joy. I know she has bad days where the world can be dark and the pain can be a stifling blanket that smothers her and offers no relief. Even then, I am in awe and so thankful for the privilege to be a part of her world.

1 comment:

  1. Thanks for being there for Grace and seeing who she is...beyond her "weirdness". She needs that because sometimes she may not see that for herself. We need people who SEE us. xoxo

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