5/25/11 Wednesday
Sometimes I feel that writing this blog is such vanity when so much catastrophe is going on in the world. I am talking about all the recent natural disasters, the wars and conflicts, poverty and daily human suffering.
So I think this will be my effort to share something good, like planting a seed.
Last night Jewel just lay on the bed with her mouth gapping wide open like a little bird, so I start my 20 questions.
Is something wrong?, do you have a hair in your mouth?-(she sometimes does), are you thirsty?, ... nothing just silence, then I say do you need your teeth brushed? and I am greeted with that big dimpled smile.
Silly me, I should have waited or expected a reply, instead I revert back to the guessing game.
Jewel does have speech, she likes to remind me that it is "hard" to speak, there is a lot to co-ordinate. The trunk/breath/mid-line posture/planning what she wants to say/actually getting the words out in a way that we can understand. I have been talking to Jewel more about taking responsibility, if we forget to brush her teeth she needs to tell us and I think it is working. :)
"Life is a journey - not a destination" -Ralph Waldo Emerson
Wednesday took us to feed the horses and plant in Jewel's planter boxes. "I do, I help", this is what she constantly tells me. But it is hard for her and I to do the gardening, so we watch Raven do the planting.
I had Jewel in her AFOs and in her running shoes, but I could not get her in a nice position. I tried to separate the trunk from the hips and it was not working, Oh how I miss Crystal our last O/T! I was tired and I let Jewel know that she can help, we just have to figure out how. These moments are hellish moments, fueled by frustration and the fears of failure and helplessness. I want so much to help Jewel help her self and to reach her goals and dreams. We spent so much time at the planters that there was no time to ride Cookie Dough. Raven planted some sweet potatoes and watermelon in one planter box and sunflowers, broccoli and carrots in the other. Sweet! We have no drip system in place so we will have to figure out the watering. Maybe if Jewel can water this will be good. We will try at some point to bring her gait trainer down as well. We are so thank full that we have this haven to go to, that the owners let us come feed and ride the horses and plant on the land. We are privileged to have this place of peace to come to, may it always remain a joy and may my fears and expectations never dull the moments we have here. We will strive to improve no matter how small the gain if only in our attitude, we will remember to breath and stay relaxed, remembering that it is the repetitive sharpening of our skills that will enable us to reach our goals. These moments are beautiful, expressive and forever xx
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