Body, mind, spirit and soul

7/11/11/  Monday
I finally finished the grant application for the possibility of more money for therapy, specifically P/T.
I am so grateful that I found such an amazing opportunity made possible by Danielle's foundation for children with cerebral palsy.  I will continue looking and hopefully find more ways of helping Jewel.  People have become so creative, helpful and giving even in these challenging economic times.  If you keep looking you will find, and if you keep knocking doors will open.
Last year I received $1.200 grant for physical therapy, and I checked back with the Homeschool foundation, they are sadly low on funds and families that have obtained grants from them have to wait for a year before re-applying for another opportunity. I am thankful for the help we received from them in the past and all the families that gave to make this possible.
When I was little my mom had a friend that became a second Mother to me.  Aunty Valery now lives in England and ended up in the hospital where she had an allergic reaction which made her life change in seconds, from being post op to almost dead.  She has her three daughters by her side but this has made me sad and made me think about how fragile life is.  All I want for all my daughters is for them to be healthy, independent, happy and lead a purposeful life.  I want to be close to them and for them to develop their gifts and talents, for them to have decent friends that mirror their excellence.  All these things comes so hard for Jewel.  For she relies on us for her very life and survival, although she is in God's hands, I guess we are his hands and I hope he blesses us and equips us to give her a meaningful life that is a quality life full of love and joy.  I also hope that Jewel continues to make functional gains.  In my grant application I said, "everything has taken so much work and effort to achieve the smallest steps forward, for Jewel, ...we all care for her so in this way we share the load and avoid burnout, ... we are team Jewel, ... this has kept us close as a family, we try to balance out the needs of our girls but Jewel seems to need more from all of us ..." And heaven forbid that anything happens to any of us, then how will we care fro Jewel.  This is why sometimes I get so tightly wound and have a boot camp approach to her daily schedule, I feel like there is so much work to be done and so little time.  I watched the Recovered Autism dvd by Doreen Granpeesheh and the CARD program for autistic children.  This is so encouraging that with the proper teacher and hard work these families were able to help their children make new brain pathways to be able to function and succeed in society.  This is what we are doing and it is not just for academics or language but for her survival.  But if I keep this outlook it gets tilted and skewed, there needs to be balance.  She is body, mind, spirit and soul.  Jewel needs fun, laughter, pleasure, family, friends, music and all the good stuff that makes our daily lives special, fuller, deeper.  Although the money and help is important, weather it be in therapy, equipment or aids.  I need to remember the power of joy and that the whole person needs more than daily rout tasks, we need to feed Jewel's spirit and make joyful memories with her.  I have started a photo album for her with pictures mostly of her.  So we can look back and enjoy happy memories together.  Jewel has been working hard on her speech homework, I got a small glimpse of a competitive tenacious spirit in her.  She wants to be able to blow into the recorder (flute) and make music.  This entails proper relaxation, motor planing, deep breath, lip closure and blowing out with co-ordination of these in the correct order to be able to produce a sound.  I have not often seen this persistence in her spirit and I am excited by it.  Usually she says, "NO" and we do not give up but it is tiresome to continue with her attitude but I am encourage by her determination that she carries during her blowing for speech.