Weekend

5/21/11 Saturday

Time flies by when you are keeping busy.  I am consciously trying to stay present in my day, for the busy work of the day pretentiously rises up in its importance.  Sometimes I feel like I am in a pressure cooker, being cooked alive, slowly dying to the lists of the day.  I always hit the ground running in the morning and it is a long distance run until bed time.  I am always trying to be present and grateful for the moment savoring it all, enjoying it all, at least this is the goal.  Saturday brought its business as usual.  For a lot of events we split up as a family and go to different functions to be represented.  Today was jammed with activities as the start of summer seems to bloom.  We decided to stay together through the list of events.  We crammed into the car with Jewel's wheel chair and took us all to a friends BBQ, what a fun and an excellent decision in spite of being jammed like a can of tuna on the ride to and there, well worth it.  My friend Terese is going to Sweden for a year, this was her going away barbeque.  A bitter sweet event, but I am happy for her.  Jewel had so much fun, she was in her AFOs and in her wheel chair.  (lately her chair keeps loosing screws and bolts, note to self, look into this.)  But right positioning never the less, my girlfriends enjoyed seeing my hip and lap free.  The are concerned for my body, got to love those ladies!  They keep my going with their encouragement and laughter.  Friends Rock!  Jewel did not participate with the kids on the water castle but all the children were given a small water gun and this made her day!  She really is a wild child at heart, she was consumed with that water gun the whole time.  Even though I had to fill and refill she wanted to hold the gun and squirt independently.  This was not possible, but she tried the whole afternoon to do it independently. "I do"   I assisted, hand over hand and she tried to squirt every one numerous times, they would look over and she was smiling from dimple to dimple, so happy and beautiful. Jewel has come a long way, she never liked being in a group like this, and would grind her teeth a lot.  Now she tries so hard to join in on all the fun, thank you Jewel for showing us all your great spirit and zest for fun and life.  I think I may look into getting multivitamins for myself so I can keep up with Jewel :)
After the BBQ we went to feed the horses, the owners have been away and some of us have picked up the feeding schedule amongst ourselves to feed the horses.  This is always nice for me and Cookie Dough keeps looking better to me.  Jewel sits in a child's car seat, it is not perfect but we try, the adaptive car seats are very expensive.  Her sisters help her stay comfortable in it during the ride, they will adjust her head back into midline, read to her, sing with her, help her feet/legs stay in correct positioning, they will encourage her to help and breath to stay "settled/calm".  We are always fighting her high tone. We picked up another kid on the way home and it is truly amazing that we fit 6 people, car seat, and wheelchair in a four door, five seater car.  Yes, Jewel was in the car seat, Raven with the wheel chair up front, and Makena and her friend double buckled in the seat belt all the way.  Safety first!

5/22/11 Sunday

Sunday brought more things to do and as busy as we have been, we still can not do all the things we want and need to do.  My friend Carrie brought down some planter boxes for Jewel to start a garden at the horses, many families have started their little plot.  I've yet to purchase dirt but we have a good start, lined it and put some stones and rocks in, and horse manure of course.  We will grow, sweet potatoes, sunflowers, broccoli, watermelon and beets. Maybe we can figure out how Jewel  can water.  We bathed Cookie Dough in the afternoon and he really did enjoy this, as long as we keep the water to a gentle trickle from the hose.  My friend Anne bought some special shampoo and Raven helped, between the three of us bathing him, Cookie Dough now looks dashingly handsome!  I think it was therapeutic for all of us including the horse :)  Thank you Cookie Dough!

Fundraising for the morning was intense and left me drained.  But this is the nature of fundraising.  A group of us met outside of Walmart and took shifts fundraising for Camp Imua.  The goal is to stay positive and energetic the whole time.  I make sure my team looks good, we do not eat or sit down during our shift, (or talk to each other or on cell phone).  I make sure everyone is well versed withe history of the organization for they will be educating the public.  Smile, smile, smile :)  I remind all that it is not the amount, but getting the word out.  "every bit helps" and it sure does add up.  We are the faces of Camp Imua and their PR.  My goal on our shift is to take care of my girls and the friends they bring along to help.  They take pride in spreading the word about camp Imua, "a special camp for special kids", heightening awareness about special needs, about inclusion, education, and much more.  "the money stays on Maui, send a keiki to camp, a special needs camp free to Maui county's children with disabilities", is some of the things these teenagers have to shout out to the shoppers going in and out of the doors to the store.  You have mili seconds to make a connection and reach that citizen.  Eye contact, smile and body posture is what we all understand regardless of the words we speak.  Many of the shoppers are from the Philippines, Tonga, Samoa, and the pacific Islands, some can not read the signs or do not understand the words we shout out but they can see the photos of the children in the picture boards we have and they always give.  Island people are family people and they all love the children and want to help.  I am always humbled by most of the peoples generosity, I tell the girls to focus on the people who give and not to judge those who do not, maybe next time they will be able to, we do not know their story, stay positive and respectful to all.  Smile if you do not know what to say, and keep it fun and positive for all.  This event was a little different because we handed out a 'wish list' of the items we needed for camp, like crayons, flashlights, balls, bubbles, hoola hoops, etc and people took that list and came out with items, we were so thrilled with the positive response.  More than three shopping carts were filled with wish list items during the morning shift, now this should be on the news, hey!  We have done rather well as far as the money collected on all of our shifts, but it is not about the money, it is about spreading the word and educating the public, the more you do this, the more money will come in.  Volunteers are a special breed of folks, they are skilled and have big hearts, they are very sensitive and canvasing for money can be brutal.  So keep your group close, keep it real and fun, take care of each other, keep the shifts to no more than three hours so no one burns out.  I have met so many beautiful people in the volunteer arena, they are amazingly talented people with the hearts the size of the community.  They have their story to, their trials and heart aches but they know the secret of giving back and they joy that comes hand in hand by helping others.  They know all about thinking globally and doing it locally in their own back yard, it is so empowering for our youth to be a part of the solution.  Jewel did not join us, she slept in and it was Harry Potter marathon on our TV this weekend, sigh.  Many of the volunteers are the children who go to camp as counselors and the campers themselves, who have special needs, came to fundraise.  They come with their parents, siblings and grandparents, it is truly beautiful and so lovely to be apart of this large family.  It was nice to see friends at the fundraiser and friends who gave money and supplies for camp.  I am so grateful that I live on Maui during these times xx  One of the volunteers brought Jewel ear plugs and a fold up tray to try out and a dvd for us to watch, Temple Grandin, autism was her challenge, life was her triumph.  We need these positive stories to fuel up on our journey, thank you Buck!  The caring of this circle never tires, we are blessed.

Water therapy, hydro therapy is a good thing.  Jewel had her O/T session in the pool and it was grate, she was so relaxed and there in no gravity to fight, for the parts of her body that is in the water.  The water relaxes her and we worked or relaxation, weight baring on the boogie board, side lying on the board, reach and grasping.  The O/T said that homeschooling is best for Jewel and she was going to send me a link that supports this.  Even though this has been our philosophy, that home is cool, to homeschool, there is so much constant pressure to send our special needs daughter to school.  How do the parents know what therapy is done in school and how can they do the follow up at home?  I have been blessed to home school all the girls thus far and never take it for granted.  The school has their objectives, to help the child sit at the desk and hold a pencil, once this is achieved, there is not much therapy done at school because their mandate and objective has been reached.  I just spoke with a frustrated mum about this.  She said that her daughter with spina bifida does not get any therapy at school because her daughter can sit and hold a pencil.    It is fun and not so much pressure, a positive session.  These sessions get us all out of the house, and into the water and sun.