Do your part

5/2/11 Monday came and went by to fast.
Jewel awoke still sad about Crystal and concerned about her therapeutic gains for the future.
She is a deep thinker and feels a lot.
She wants to make progress.  She worries.
I wish I had more time to do all the things I need to do for Jewel.
I argue a lot with her Da for he always wants to show her his love by taking off her fiberglass shoes -the AFOs and put her on the floor on her back.  Out of the functional position in the wheel chair and give her cookies and sweets instead of fruits, protein and veggies.  I am constantly trying to give Jewel the healthiest of foods always explaining everything to her and she understands which helps a lot.  This way she can make better choices for herself.  The AFO's break her high extensor pattern and so does the wheelchair when she is in proper physical placement and alignment.  In 'bad' body positions, this encourages twisting, un-alignment, and dislocation of her hips and other bones.  She went to feed the horses with her Da and sister Raven.  I am still under the weather and stayed home after work to sleep.  My throat gland is still large and I am rather tired.  I feel bad that Jewel did not get to ride the horse but I need to be well to care for her.  Still looking for another therapist. It is most beneficial to have a partner that is consistent and there for you and the family.  It is very beneficial to have a team of helping hands, minds and hearts when it comes to raising a special needs child.  Someone told me how this east indian family raised their daughter with cerebral palsy.  They had parents, siblings, and grand parents living under the same roof, which made for a lot of help and support for the whole family but especially the daughter with cp.  She is 27 now and doing great and still living with her family and I think this great circle of family help was a huge blessing for both the parents and the child.  There is no small help, be counted and do your share of the work, for it is all valuable in making the family link stronger.
5/3/11 Wednesday
I might take today off from work, although I loose much needed income, my peace of mind will increase for I have a lot of calls and loose ends to take care of.
Today we will go to Imau family services and talk to the United Way on behalf of the special needs camp, Camp Imua.  It is a free camp for school aged special needs children in Maui county.  It is run by volunteers and it will be year 35 this year.  They rely on donations from both corporate and community sectors to make this camp a reality.  We will go and speak at this meeting today and tell how this camp has benefited my older teenaged daughters by being a part of the community outreach and making a difference in other children's lives this changing their own hearts.  And how Jeweliana enjoys camp, for this is where she met Ava her first friend.  We have realized as a family that we need to be the change we want to see in our community.  I strongly believe in starting in your own back yard, by thinking globally and acting locally. I guess there will never be enough time in a day to do all that we want to do so we must prioritize and delay instant gratification by choosing to do the hard work today and hoping the rewards will be there later.