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4/19/11 Tuesday
Jewel has been sleeping better and her body has been more relaxed.
Yesterday we all noticed how loose and relaxed she was on the horse instead of that high tone kicking in.
We are grateful for this.
I have noticed that Jewel has no filters, at 10 she is completely honest with no social pressures to say yes when she means no.
If she does not like a gift she will say, "no tank you", or "give away", regardless if this is socially acceptable, if she is able to express her emotions in a word she will let you know. (We are teaching her to be aware that she can hurt peoples feelings and to say thank you to the giver). She is very free with letting you know that, "I love you" or "tank you". She has let us know that,"hate grey", she strongly has an opinion on grey. Her favorite color has always been yellow and second choice has been green as of a year ago. She wears all colors, and will ask to wear, "black, brown,purple ..." She chose the color of her gait trainer that is in the mail, and it was not yellow or green, which were some of the choices. Instead Jewel picked, "red", good choice Jewel! Makena is very conscience of Jewel's limited ability to control her world. In respect of this Makena and Gary will both always let Jewel pick the clothes and the color, downs to the panties. Jewel let her Da know that it is called' "panties" not underwear!
When she is in pain she says,"I like to cry".
There are no social restraints on her ability to express her feelings.
Her face will always tell the truth and her words though few will back that face up!
She has always relied on eye gazed to communicate and we have relied on her facial expression to interpret her speechless emotions. Her smile has always been able to launch a thousand ships, and her eyes are as clear as crystals letting you see her heart & fireworks. Though sometimes those clear eyes look deep into your soul. Jewel had cold blue eyes up until she was four and then somewhere by the time she was five her eyes had turned a pale green. When she is tired she gets a faraway glazed over look, like a dull chandelier. We have worked on her ability to look at our face/eyes/or nose head on, because she would always avoid looking directly at our face. This would bring me to tears when she was younger, why would she not look at her Mama. I used to take this so personally, but once again the speech and language pathologist would work on this aspect of communication with us. As a little girl Jewel did not like any toys or T.V she just preferred humans. She preferred us to be constantly around her, so she could see and hear us, this made her happy. She still tends to look at you through her peripheral vision. We have been working a lot on this, trying to get her head in midline and her eye gaze to be direct and verbally prompting her to look at the object or at her hand, explaining that the eyes and head lead the body.
Well I guess I do not mind that Jewel speaks from her heart in truth, we tend to sugar coat and confuse what we need or want to say. Jewel there is no judgement, we love that you speak from your heart's truth. You are a girl that speaks what she means and means what she says. :) Thank you for this, I remember when we were still in the Neonatal Intensive Care unit they said that there were no guarantees that you would ever speak. I was wondering why you were not crying, because you cried at birth and there after, before being intubated insert a tube into (a person or a body part, esp. the trachea for ventilation).  But each resident doctor in training got to practice on the little babies every night. Each resident doctor in training would get x4 tries intubating the child. Sometimes Jewel got x10 practices done on her. We were not aware of this until much later and then we enforced our parental rights to stop this. We learnt a lot about this teaching hospital. I am thankful that she is able to speak, even if it is a few words, even if the speech is not clear or it sounds strange. I know she needs more breath to make the speech sound better, stable trunk, stronger neck and head control, and more practice. We tend to take all this for granted until we look at Jewel, she reminds us that every function of the body and every moment is a gift. Thank you for teaching us so much Jeweliana! We love you! xoxoxoxoxo I encourage you to speak directly from the heart, It will not fail you!

"The race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favor to men of skill; but time and chance happeneth to them all." Ecclesiastes 9:11 (King James Version)