Monday, January 31, 2011

All tired

1/31/2011 Mon.
Sat up with Jewel on the couch all night. She was super congested and kept saying "hate sick" and "help" when her phlegm was choking her. It is great that she has a voice and can tell us things. :)
Using Black Elderberry to boost her immune system, Chestal honey for congestion, echinacea drops for children to help with the infection and tons of throat coat and breath easy tea. These teas only taste good when you need them, other wise they are yukie! (according to Raven)
Cancelled the body worker appointment and the occupational therapist appointment. Hopefully tonight we will all get some needed sleep and tomorrow Jewel will be doing better. xo

Sunday, January 30, 2011

Soup

1/30/2011 Sunday
Jewel is sick :( Hope she gets better fast. This is where she takes steps backwards, it is hard on all especially her. Raven made some good soup for Jewel using our Vita mix, thank you Raven xo Her spasticity kicks in a lot when she is sick. Get better fast Jewel.

Saturday, January 29, 2011

Time to reflect

1/29/11 Saturday
Today I managed to practice meditation, it is day four of my twenty-one day challenge. This is a gift that I am giving myself. I don't get much time for cultivating my other passions. I need to be present in my day, in this way I am able to enjoy the moments and just love my children. When I am not present, I tend to be more sorrowful and fearful. This does not make for a happy mother, and we all know; the mother sets the tone of the home. As mother I need to be grateful, joyful and peaceful. Sometimes I get consumed in the vortex of need based tasks and I am not really living. I am striving for balance, not just living to maintain the lists. There is a pile needing to be filed, bills to pay, invoices to mail out, thank you cards, correspondence, birthday cards and gifts, parties to organize, friendships to celebrate, book cub, horse therapy, tutor, occupational therapy, speech therapy, massage, body work, play time, barbie time, play mermaid, homeschool, reading, meal preparation, meal plans, meal shopping, driving, Awanas, house work - (ha ha who has time for that, I am too busy cleaning other people's homes). It is easy to loose sight of the quality of our moments together.
I need to balance my older teenager's needs and my almost ten year old, (Jewel). Need to take care of a sick child, Raven is sick today :( .
Beware of parenting out of guilt because this is a sure miss. I have parented out of guilt, thinking I was compensating for Jewel's disability, trying to make it up to my older children, for at times our days revolve around Jewel's needs. I expect a lot from my older girls because we are a family and families have to stick together. Jewel has and still does need many helping hands. Raven was six and a half and Makena was seven and a half when Jewel was born. These to girls have had to step up to the plate ever since my pregnancy because it was a high risk pregnancy. Full of bed rest, emergency room visits, constant bleeding, and then a mother who was medi-vact to Honolulu for pre-term labour. I am blessed that in spite of all of this my girls are very close and love each other, really they are best friends!
Our life with Jewel, and her sisters is very organic. When Jewel was little all I remember doing was crying. My life was too big for me, I was not equipped to be a mother of a child who was so fragile, who was so developmentally delayed. My existence became to nurse, keep my milk flowing for five years, make sure Jewel made it alive through another night. She screamed for years at night, she does not do this as much any more. I managed to nurse Jewel for four years, a great feat for us. I am rambling with these run on sentences. To simmer it down, I am learning to savour the moments, make the hard choices and decisions, keep one foot going in front of the other. Keep breathing, keep smiling, keep praying and keep believing. Jewel had a couple of accidents today and we all lived through them, and so did she. She does not like to fail, she is a high achiever like Raven. Being diaper free is a great achievement, especially when Jewel relies on all of us to get her to the bathroom. Her dependency used to hurt my heart now not so much. Because she is a whole human being, a complete soul and a gift from God. I am just grateful for each skill that Jewel can master, in her own way, in her own time, and it is good. Each one of these marks is a celebration for us all because it has taken years working along sides her, commiting to the goal and purpose and then we have the Aaah moments. We all win on these days. I will not think on the future, just enjoy today, this evening and yet I will hope for and believe in a better tomorrow. I am my daughter's greatest fan, and I hope you are your children's greatest cheerleader as well!
Take time to Reflect.

Friday, January 28, 2011

1/28/11 Friday :)
It has been a long day, and I will leave it at that.

Thursday, January 27, 2011

Trading for services

Thur. 1/27/11
When I arrived to pick Makena up from work she told me that there is a book in the library on how to blog. I may check out this book for some ideas, great suggestion Makena. I know that my blog has some spelling, punctuation and grammatical errors. I tend to censoring myself when I get caught up in my head, then when my heart is engaged I seem to set sail. Being able to consistently post is an accomplishment for me.  I hope our family on the mainland will check out my entries and feel a little included, kinda like a fly on the wall. I also hope that some one with a special needs child will be encouraged in some way. Jewel will be ten in less than a week, it has been a long journey and we are still learning to pushing beyond the Cerebral Palsy label.
Last night was a rough sleep for Jewel/me. He spasms kicked in, thank goodness for the hip abductor brace from Shriners. 11pm is when it started and it lasted into the wee hours. We awake tired but sometimes Jewel gets to sleep in and get some rest.
Today is day three for Jewel being in her big girly panties. Yay! :) No accidents either! Raven and I went to feed the horses, and as I was driving, Raven was texting Makena to give Jewel more water so that she can go pee. I love these girls, they are so attentive to each other especially their younger sissy! It takes love and compassion, patience and laughter to get through the day. Some days feel like weeks, today is another good day!
Raven and I went to feed the horses, we groomed Billy, aka Cookie Dough and he seemed to eat a little faster. We brought three bags of food to help with his food. I know that as he gets older Kandi will have to make some tough decisions about his quality of care and life. I trust her, she has a healthy balance of heart and mind. I was thinking of this yesterday and I cried for hours, I cant' imagine our world with out him, we love Billy and to me he is so much more than a horse. We love him and he has enriched our lives and helped Jewel so much. He is the only animal that we pray for!
No O/T because Crystal was sick, she is such an amazing therapist, an angel really! Hope you get better fast! xox We took Jewel to Dr. John the Chiropractor, her session was good, he found a little tickling was just enough of a distraction to do an adjustment. He is very gentle and careful with Jewel. Tickles with a purpose! They work well together, Jewel trust's Dr. John which allows their friendship to grow. Raven and I sit in the office and help with Jewel as needed. Dr. John does not charge us, so we do a trade. We clean his office, then he works on Jewel. All parties are happy.
Off to read to Jewel, hope you have a nice book that you are reading!

Wednesday, January 26, 2011

Books

Jewel is currently reading, or at least I am reading these books to her;
1. Ella Enchanted by Gail Carson Levine
and the seven book series,
2. How to train your Dragon by Cressida Cowell.
Jewel loves books, this is her long time love and passion.
This was one of her first words; "Bookie" and "Doggie Bookie", 2006.
Thank goodness for the library and great librarians who helped me find all the doggie books for Jewel and yes, gotta love those books on CD, they have saved us on our tired days! Books rock!
Today Jewel had an awesome therapy session today. The P/T Aunty Carol came at 3:00 and worked on maya facia, then the speech pathologist, Aunty Beth came at 3:30 and they over lapped, working together on posture, form and breath. Beth is focusing on the letter "R". This is one of Jewel's new years resolutions, learning to master and say the letter "R". Other resolutions are; to read well/better, to sit up by self, to walk. She gets to pick what she wants to do on the list, she made a list a couple of years ago and reached all her goals except one; to ride a bike.
Goals are important especially the ones we make for ourselves.
Be well xo

Horse boy - a documentary

Aloha 1/26/11
Thank you Jo for turning me on to this documentary;
http://www.horseboymovie.com/Film.php
please check it out!!
Here is another sight about horses and special children;
http://www.wayofthehorse.org/Articles/horse-therapy.html
Both so amazing and so inspiring :)