Butterfly photos

Jewel had a love/hate relationship with this butterfly. :)







2/28/11 Today was a good day.

Jewel said that the butterfly was" cute, a little scary and colorful" :)

It was scary because it was something brand new, the butterfly was tickling her as it walked and grasped at her skin! Yes, this monarch butterfly was colorful and beautiful! Almost like a pet, it stayed and walked all over us, what fun, then we put it carefully into the tree upon our departure. Thank you butterfly!

See the child not the disability

2/27/11  post by makena

I'm not sure if my mom has posted on the blog about how there was the possibility that Jewel would be filmed for a documentary to raise money for her therapies and other equipment... I read the entries my mother posts, but it is 10pm and usually at this late at night I am on my laptop editing photos quietly not thinking about anything, or I am in my bed with a book, so I can not be expected this late at night to remember things.

This morning we were sent an email asking us to make a final decision on having the documentary shot. The email told us that we would start shooting in five days.
Five days.
That thought is so scary and overwhelming to think of, because documentaries take time to plan before the shooting is even done.
Jewel's OT came over and we had dinner and talked about our vision for the documentary, our fears, and what we wanted it to be like, and that jewel would only be in front of the camera two to three hours max.
Things are rolling for the documentary to start shooting in the next five days. To be ready for that we will need to put in at least, six hours of planning.

When Mom and I were walking Jewel's therapy dog grace to go pee, we were talking about the documentary. When we came to the subject of a mission statement, I told her I wanted Jeweliana to be represented not just "as a kid with CP" but as a "full and unique child that she is." I'd like to share my thoughts on that above statement.

Jeweliana is not just a child with CP. Today we took Jewel to the bathroom at Safeway, while fundraising for a special needs camp on Maui, and the lady in the restroom said "she's a cp kid?"
I wanted to tell her that no, Jeweliana is not just a CP kid. Jeweliana is a child who has hopes to ride in the fourth of july parade, who dreams of training dragons and having a mermaid tale. She makes up her own dragonese language inspired by the books by Cressida Cowel. She laughs, has a wicked sense of humor and cried at the end of toy story 3. Jeweliana is her own complete person, not just a statistic of a child with CP.

If people are going to give us money because this documentary makes Jewel look like some poor helpless child that they pity, then I want nothing of it. Because no one needs pity. Because to pity someone is like saying they are worthless and helpless. Jeweliana is trying hard to be independant, and working hard in therapy, she does not want anyone's pity. She wants friends and more oppertunity's to shine and have more therapy. But not because she is one of many kids with an umbrella label of CP, but because when Jeweliana smiles you see that she loves to smile and makes you want to get to know her and make her smile again.

When my friends and I were outside Safeway raising money for the special needs camp jewel attends in the summer, a girl with her mother came up and asked us if we knew her friend Alexa. Yes, we did know Alexa.
The girl asked us if we knew her friends alexa. Not her friend who has "insert label here."
This girl knew Alexa as a person, they shared a history together; they had laughed together and had a good time. And all this girl told us was that Alexa was her friend.
That moment of Alexa's friend is what I want the documentary to accomplish. That they feel like they know Jeweliana as Jeweliana.

I want this documentary to accomplish what volunteering with special needs kids accomplishes: it makes you see these kids as special, but just like you. when you get to know a special needs kid you forget about their label, and they are just another face to you. When that kid stops being a disability and turns into a friend, then you have accomplished something. That is what this documentary needs to accomplish.
If Jewel gets money for more therapy or for a gait trainer, then it is a bonus.

Jewel and her Ah-Dah

Dad and Jewel with her American Girl doll kanani








Photos by Makena

8am dentist

2/23/11 Wednesday

Love this poem; our deepest fear

one of my favorite lines; "...let our own light shine, we unconsciously give other people permission to do the same...."

I have had some up and down days lately.

I have decided to enjoy my day because it is my duty to do so, since with freedom comes the responsibility to embrace the moments we have been given today.

There are a lot of fears and down moments that come like a robber and a thief, these fears come with all the uncertainties for the future. Every parent carries these for their children and even more so for those of us with a special needs child. I daily fight these dark thoughts because they are useless. Instead I cling to the joy and power of the moment, delight in our day and chase away the negative thoughts of what may be, what might have been.

Today I choose light, today I choose hope.

There are many frustrating moments with Jewel because she gets frustrated, or I can not understand her request, or I feel like I can not help her, or her body is not working the way she or I want it to. I can love her and she is loved. If only I can remember to breath and just love her in these moments of hopelessness. If only I can not judge the moments, and just be love!

In spite of all the limitations that confine Jewel physically, she has limitless opportunities and possibilities.

Yesterday we went to the dentist at 8am for a checkup, cleaning and fluoride treatment.

I always take the first appointment of the day, I always sit with her and never leave her in the chair. Jewel cried through the whole appointment and my words and explanations did not seem to comfort her this time, usually I can always reach her. It is worth the tears for Jewel has good strong teeth and I want to take good care of them. She has had a lot of dental work done as an infant due to all the medications given to her in the NICU, which caused brittle teeth. After may thousands of dollars her teeth have been good and strong, I hope this continues :) Take care of your teeth as well, it is so important to sustaining good health!

May Peace be with you.

photos of Jewe and big sissy Makena

Photos by Raven.

Start noticing the improvements

2/19/11  My little sister Jeweliana, who my mom writes about in this blog, got a beautiful american girl doll for her birthday.
Though Jeweliana and her Kanani just met yesterday, Jeweliana loves her. Usually the first thing she talks about (and the last thing before bed) is about her service dog Grace, today, it is about her 'dolly'.

It makes my heart so happy to see Jeweliana be so fully aware of what her arms are doing, what each finger is doing when she holds her american girl doll. She is so loving and careful. As soon as her fingers start to wrap around Kanani's hair, jeweliana says to me quietly 'sorry'. She is so aware of what her fingers are doing, even if the muscles to unclench her fist is not as strong as we want them to be.

The biggest thing in my life is realizing there is always hope. With Jeweliana the little things are truly big things. She is so verbal about what she wants to do, how she wants Kanani to sit, or what clothes for her to wear-that is such a blessing, such an improvement that we can understand her. Jeweliana is so in touch with her body when we play with her American girl doll, because she is being careful-that is a great improvement. For jewel to control her body, she must know where her body stops and starts and what it feels like. She is achieving that.
In just a couple of weeks since Chrystal (her O/T) asked jewel to take a breath, and keep on sitting in her stroller/wheelchair Jeweliana has mastered it. For as long as we have had this chair she has arched out of it as soon as the straps are undone. Now she sits calmly and relaxed. She has such control of her body.

We can only live with joy once we start to notice the improvements. I was filled with so much hope tonight, and excitement, that i had to do a blog post. Especially once I realized Mom originally intended for us to take turns doing blog posts. :)


Post written by Makena, Jewel's eldest sister.

Freedom

2/18/11 Friday

So many Northern African countries and middle east going through upheaval. Peaceful demonstrators, innocent protesters killed, death, wounded, fear, anguish, rape and rage.

My heart is heavy knowing how so many have been killed, brutalized and wounded.

I have nothing to share this evening.  What is happening to the women and mothers, who will care for the children and protect the week.
I cherish my children and our freedom, I pray for those with out freedom and safety for their loved ones. There are brave people every where helping each other selflessly, taking the steps towards change, standing up to be counted, voicing their stories so that they will not be forgotten.

I burn a candle for you tonight.

Cow girl

2/17/11 Thursday.

The weather affects people with Cerebral Palsy, it is still humid and voggie. In-spite of this Jewel's body is not all twisted and spasmy. Could it be that she was in the stander for 1hr 20min. today. Monday it was 2hrs, Tue. 2hrs, Wed. 1hr 45min. Could this accumulative and consistent time in stander help? We have been administering Calm water which has helped with daily number twos :)

Cindy took Jewel riding today, Raven and I tagged along. Cindy leads the horse and Raven and I are the side walkers. Cookie Dough did not look chipper today, so Raven washed him with some water to cool him down. This seemed to do a lot of good for the 'ol feller. Cindy and Raven groomed the horse. Cindy has taught us to love the horses and to be confident and safe, thank you Cindy.

Today at horses Jewel had to go, and like a cowgirl we went behind the shed. I bagged it up intending to take it back with us and forgot, guess it will be there for us tomorrow, oopsie.

Such a magnificent world of being diaper free, it is worth the work. Kandi left the nice new saddle in the shed and it is light and works nicely for Jewel.

Today Jewel rode for 25min and did 21 push ups on Cookie Dough. Her posture was good as long as Raven and I co-ordinated pushing her elbows into her torso and holding her foot in the correct position, then everything else seemed to line up and Jewel sat up nice and tall!

It is exhilarating to live in these moments, where you are present and everything is lining up nicely. So I will not say any more tonight.

-"Aim at a high mark and you will hit it.  NO, not the first time, not the second time, and maybe not the third.  But keep on aiming and keep on shooting for only practice will make you perfect.  Finally you'll hit the bull's-eye of success." quote by Annie Oakley

Annie was one of the many females we read about when the girls were little, we learnt about Elizabeth Blackwell, Clara Barton, Elizabeth Fry just to mention a few.

Heep of gratitude

2/16/11 Wednesday
Exhausted.
Thank goodness for black tea, and a heep of gratitude.
Day 23 in big girlie panties for Jewel. What a lovely happening to share :)
Raven and I fed the horses today, Billy aka Cookie Dough did not look good. He looked so tired and old. He just looked at the soaked food :( Maybe it is the humidity and the Vog that is getting to him. I do not think he drinks enough water and this makes me sad.
Jewel goes to the bathroom constantly with fewer false alarms. It is worth carrying her each time.
She had a great speech session with the speech and language pathologist. Beth is so gifted. Today she did rhyming words, yesterday she said lotion for the first time. Still working to get "th" -ir-"s" ty, lots of sounds to get in!
Today Beth (Aunty Beth),gave Jewel a belated birthday gift. It was a lovely blue Ariel Mermaid bag, with Jewel's name monogrammed on it. So Jewel wanted us to fill the bag up with all of her barbies, too cute. It is an under water cave now.
Thank goodness for talented and compassionate therapists. Thank goodness for Jewell's big sisters! Laughter amongst my girls is pure angelic sweetness. There is so much good that surrounds us amidst a world of turmoil. It was not too long ago when a child that was different was segregated from society and torn away from their family. How bless we are to be living in a country that respects our families wish to homeschool and care for our own. I am thankful for being alive in these times, where I can support our family and we can stay together.
I am learning not to judge. I am learning to be content. I am learning to delight in the moment with out projecting limiting expectations. Life is good.

VOG

2/15/11 Tuesday

It has been hot and muggy and voggy.

Raven, Jewel, Crystal the O/T and I went to horses today.

It was another great session, Jewel got to ride with Crystal on Cookie Dough :)

We got to see the other horses and visit with the goats, what a lovely gift!

Met a great young man yesterday, I overheard his conversation regarding his new go pro camera! So I introduced myself and asked him if he would be willing to video Jewel on the horse. He said yes and apparently his mother is a physical therapist, so when I asked how much he would charge he said, no charge. It is amazing how everything we need is right in front of us, all we need to do is look, really see. Ask and it is amazing how doors open :)

So mark agreed to come out next thursday to video Jewel working on the horse with her O/T, or aunty Crystal.

The intention is for Crystal to send the visuals to a O/T at a horse therapy ranch and see what adaptive horse gear or aids Jewel may benefit from. Then we can fund raise to get the gear. Cookie dough gave us 25 amazingly healing minutes of his time, then we fed him. Raven is so good with leading the old horse, steady and verbally reassuring the horse. I am a side walker, holding on to Crystal's thigh, ready to take Jewel if and when needed, adjusting Jewels legs if needed, and just watching the horses every move, thanking him along the way. Crystal bathed Billy aka Cookie Dough to cool him off, then he was brushed by Raven and Crystal, Fly sprayed and Raven picked his hooves clean, then saddled up by Crystal and cinched up by me. Most accidents occur due to faulty equipment or equipment that was not fastened correctly. So double check, triple check, pay attention to the team, surroundings and the horse at all times. The horse's ears, his eyes, his nostrils, his every movement will tell you how he feels and if there should be reason to alarm. Jewel cried at first, because she is no longer wearing diapers due to day?8 /9 or something. So since she is so small, she needs padding on her seat. Owie butt! So out came the sheep skin and all was better :)

Mother always knows her children and what is best for them, trust your instinct Mother. Raven and  Crystal thought it was her legs but i know that her tears were real. I just knew it was her butt! Thank goodness I honor my intuition.

Trust your inner voice Mum because it is there for a reason! What a beautiful day full of promise and potential.

A very thirsty day for Jewel and so we quench her thirst with lots of water and sneak some Calm water into the sips. I tell her what she is drinking and how it can help her, this empowers her and she always agrees to take the Calm because she has made the choice and she knows it is the correct choice :) Thank you Jewel for taking care of your body and making great choices. So do something wonderful for yourself, make a great choice to respect and honor your body and your children's bodies by drinking some water or eating some healthy food together!

Vog is a form of air pollution from sulfur dioxide and other erupting volcanic gases, these particles react with oxygen, moisture and sunlight.  Combining Volcanic and smog together we get Vog.  We use this word in Hawaii to describe the pollution that sits in our atmosphere smothering us and making us sick until the trade winds come and blow it all away!   The Kilauea volcano has been erupting continuously since 1983, emitting 2-4 thousand tons of sulfur dioxide every day.

I copied and pasted this Wikipedia page, this will explain Jewels rattle in her chest;

[edit]Description

Sulfur dioxide emissions from theHalemaʻumaʻu vent creates vog.

Volcanic plumes as seen from space shuttle Atlantis

[edit]Vog in Hawaiʻi

In Hawaii, the gas plumes of Kīlauea rise up from three locations: Halemaʻumaʻu Crater, Puʻu ʻŌʻō vent, and from along the coastline where lava flows from the East Rift zone enter the ocean. The plumes create a blanket of vog that can envelop the island. Vog mostly affects the Kona coast on the west side of the Island of Hawaiʻi, where the prevailing trade winds blow the vog to the southwest and southern winds then blow it north up the Kohala coast.

Prolonged periods of southerly Kona winds, however, can cause vog to affect the eastern side of the Island on rare occasions, and affect islands across the entire state as well.^[3] By the time the vog reaches other islands, the sulfur dioxide has largely dissipated, leaving behind ash, smoke, sulfates, and ammonia.^[4]

[edit]Comparing vog with smog

Vog and smog are different. Vog is formed when sulfur oxides emitted by a volcano react with moisture to form an aerosol. Theaerosol scatters light and so makes the vog visible. Smog is formed largely from the incomplete combustion of fuel, reacting withnitrogen oxides and ozone produced from carbon monoxide by reactions with sunlight. The result is also a visible aerosol.

When smog levels are high the sky looks yellowish grey because nitrogen oxides are yellow. In contrast, sulfur oxides are colorless and vog looks grey. Once vog dissipates, grey spots in the sky may for a time remain trapped in the inversion layer.

[edit]Health hazards

Vog and clouds created a strangely shaped sun in this sunset.

Most studies of vog have been in areas where vog is naturally present, and not in controlled conditions. Vog contains chemicals that can damage the environment, and the health of plants, human and other animals. Most of the aerosols are acidic and of a size where they can remain in the lungs to damage the lungs and impair function. Headaches, watery eyes, sore throat, breathing difficulties (including inducing asthma attacks), flu-like symptoms, and general lethargy are commonly-reported. These effects are especially pronounced in people with respiratory conditions and children. Vog generally reduces visibility, creating a hazard for drivers, and for air and ocean traffic.^[1]

The long-term health effects of vog are unknown.

[edit]Recent events

Several studies are underway to measure the air quality near volcanoes more carefully.^[5] Sulfur dioxide emissions increased on March 12, 2008 when a new vent opened. The increased vog level has caused evacuations and damaged crops. In the summer of 2008, the County of Hawaiʻi receive a disaster designation due to the agricultural damage.^{[6] _taken from wikipedia}

^{this will explain Jewel's rattle in her chest, even though we have cut out her milk intake.}

Ask

2/14/11 Monday

Happy Valentines day everyone!
Every day should be a day of LOVE, and Gratitude.

Someone I respect and trust from the Beeyoutiful company recommended; " I would definitely suggest if you are not using them already would be a probiotic. Tummy Tuneup, although a capsule, could be opened and put in her drink or food. This definitely will help build her gut and protect again infections or bad bacteria.

Next, I would suggest if she is not on it is Vitamin D3. We have both a gelcap, which is very small, and a liquid. This will help her protect against infection and support many of her vital functions and organs.

Lastly, if she isn't on a Cod Liver Oil supplement. I would definitely suggest that you look into our Cod Liver Oil supplements. We carry both a Beeyoutiful labeled gelcap or the some of the Green Pasture's line of Cod Liver Oil and/or High Fat Butter Oil

I hope this helps, and if you have any questions, please let me know. You may also find some of the posts on the forum, www.merryheartmedicine.com or at www.facebook.com/beeyoutiful" from Mary Ewing

Remember that without a healthy gut we can not be healthy, so think twice before shoving that piece of food into your mouth and ask your self is it good for the gut, will it help feed the body with the best nutrition. Everything we feed Jewel is pondered on and prayed over. I got my kids tooth brushes for valentines day xox

Beach

2/13/11 Sunday

Just got off the phone with my child hood buddy, whoop I am amped, feeling so happy.
Briddy is still in South Africa and it is if time has no distance, our friendship is still as fragrant and bright as ever.

Been a little stressed out this weekend.

Highlight today was taking Jewel and Raven to the beach with their Da.

It was so fun for Jewel, she got us all to dig and make castles for her, while her Barbie Mermaid swam in the bucket staying sand free :) Then we took her into the ocean and she had fun! She said, "Ankle better sea water". I guess her ankle feels better in the ocean water, so we better figure out how to do it again. It has only been four months since we were last at the beach and we live on the beach. Need to reflect on this and my schedule, it needs a large adjustment. We only spent on hour at the beach and it was the perfect hour.

Nature is best!

Take yourself into nature!

Rest

2/13/2011 Sunday

So many changes happening around the world, floods and people demonstrating, life celebrated, children read to, some one laid to rest. Life is so large. Yesterday I felt impatient and angry. There is always so much to do and never enough time to do it all. Today I will aim to just enjoy the day in spite of my long list. I will enjoy my home amidst the dust and things not put away, I will delight in my children as they are and stop redirecting them to task. Today is another workday for me but I will wear the heart and attitude of rest.

We have had some hard nights for Jewel has been restless, a bit constipated and more spasms.

Feeding her fiber, leafy greens, fish, everything with the best cold pressed olive oil, (organic, unfiltered, unrefined). This usually helps move the bowels and helps with caloric intake. Jewel is very tiny and burns up lots of calories due to her spasms. Then I tried the Chamomile tea, (Traditional Medicinals brand, the best and purest teas. All pharmaceutical grade) and it did not calm, most probably because she did not like it or should I say is not used to it and has not yet developed a taste for it, and hardly drank it. Chamomile is a digestive aid, gently nourishes the nervous system and gastrointestinal tract. Then I made the trusted Calm from the health food store and you know it helped with number two and she slept a lot better as well. Thank you! Calm is the brand name, it is a magnesium supplement, restoring healthy magnesium levels and balances calcium intake, acts like an anti-stress agent. Read the directions and always submerge the powder into warm or hot water to activate the magnesium, if it does not bubble it has not been activated!

Potty training is going well.

I finished my gift to my self which was taking the 21 day meditation challenge and it was good, I enjoyed taking 2-20 min. out for my self to just be still :)

I highly recommend it!

Thank you xoxox

Yet another day

2/11/2011 Friday

So much on my mind;

Was feeling frustrated with a family member yesterday, because they said they'd send a computer aid for Jewel. The aim was to help with her reading, I never asked for this, this was their idea. Three months later and it has not arrived and I figure it won't. It does not matter, but getting Jewel to look at the chalk board, point at the words and letters, make sure her eyes were looking, holding her head in the correct position in the wheel chair, AAAG very frustrating. Then I thought maybe if that person sent what they said they would, our reading lessons would be easier. Relying on others is frustrating. Whose to say that the gadget would work anyway! The grass always looks greener on the other side, but we know that when we get there it is not. You still have to water, work, weed etc . I will breath and let go of that idea and be content with what we have and trust that the answers and solutions will present themselves. :)

Will post more later, do not want to be late for work today!

Decided to call that person just encase they had sent it and just to clear up the communication. I was starting to think that I imagined the whole thing. It turns out that the i-pad is expensive and they can not afford it. I wish they had just told me that. I know that if it is important to Jewel's education the aids will come one way or another. Lesson to self: do not gift something that you can not afford and if things change just let the person know, they will understand.

So yesterday Cindy called me to tell me that her friend Martha really wanted to help Jewel. Martha has a niece in NY and she wants to do some sort of documentary on Jewel for fundraising purposes. So we decided that this was a great opportunity. As long as the documentary is positive and beautiful, something that can encourage others and show hope. We will see, I will keep you posted. The sky is the limits.

Got to take Grace out. But before I forget, today at the bank one of the branch personnel let me know that he was willing to fund raise for Jewel. If we know what adaptive equipment is needed for the horse, he is a canoe raiser and is willing to do this to help. Whoop Whoop, wow when the gates of heaven open! :)

Teeth

2/10/11 Thursday

Teeth :)

I had to go to the dentist today, had yet another broken filling. So sad that I have neglected going to the dentist, always putting another bill first. I recommend taking care of your teeth, start today!
Healthy teeth = healthy body/peace/nice smile :)

I went to Dr. Gregory Alan Kealoha Hoke, DDS. He is tops!! He is genuinely kind, super gentle, he cares, his office clean, staff efficient in getting you in fast, has most modern equipment, speaks so that you understand, and he does not hurt you, I promise. I left feeling so relieved, committed to continue taking care of my teeth, and I did not feel robbed. I do not have any insurance and this speaks volumes. I highly recommend the dental services of Dentist Hoke. He also works on special needs children and autistic children. Jewel goes to the Pedodontic office and has only seen Dentist Sato. Maybe when Jewel is older we will go to Dentist Hoke! (note to self, think about this switch)

Hoke said that most children ingest enough tooth paste to have enough fluoride systemically in their systems. This means no need giving fluoride pills because they are ingesting enough from the fluoride toothpaste. We do not give any of our children fluoride since it is a heavy metal and heavy metals add to neurological issues. Cerebral Palsy is categorized as a neurological impairment / injury.

My friend's son has the autistic label. He said his cavities were ramped in the boy's mouth, even with good food choices & hygiene care. What worked for this boy is drinking water after every meal, the water helped rinse all food particles and sucking on an ice cube did the trick. This extra water changed the environment of his mouth. Lesson, drink plenty of water! Jewel does, she is constantly drinking, and we are constantly giving it to her, hopefully one day she can self feed and self quench :)

An apple a day keeps the dentist away! I've had my apple, how about you?

speech and P/T

2/9/11 Wednesday

Do not know where the days go or how we got to wednesday already.

Another day in big girlie panties :) Hip hip hooray!! Way to go Jewel and family xoxo

Jewel had a great speech session even though she was very tight. Working on Rs and the word "thirsty", to not sound like "dirty". It is tricky getting the blend "th" then inserting the "s" then "ty". Keep practicing! Jewel does not like to fail and her speech and language pathologyst went to great lengths to explain that it was okay if she did not get it right the first time. Beth is there to help teach Jewel how to say the words she needs to communicate with us. All the speech pathologists have helped in strengthining the facial & mouth muscles. This aids in drinking water, eating and swallowing safely and then come the needed words.

Remember; it is the boring or hard repetitive sharpening of our skills that will ultimately enable us to reach our goals. :)  (easy to say but harder if you are on the other end of the sharpening). Her session consisted of the game, Go Fish. the words were all ones with intention to sharpen her "S". Nothing is left to chance, the lessons are planed with attention to Jewel's needs and progress. Beth is amazingly knowledgeable, kind, organized and fun! Thank you Aunty Beth!

She also had a great P/T session, lots of deep myofascial release. (Myofascial release refers to the manual massage technique for stretching the fascia and releasing bonds between fascia, and integument, muscles, and bone. This helped Jewel have a bowel movement after the session. She gets so tight if she is constipated. We occupied Jewel's mind with lining up the Barbies and playing with the Dolphin. Her mind was distracted enough with play for the P/T to do a lot of deep work on her legs. Jewel did not cry, complain or whine. She was playing Barbie. We can endure so much more when our spirits are full of joy! Thank you Carol!

I told Carol that I had not found a blog on any children with CP who are not on meds. She has serviced adults and the pediatric population for a very long time, and she said that Jack and Jewel were the only clients that she has ever met that live with out medication. Wow!

May God bless Jack and Jewel to prosper with good health. May our families keep this vision and may our resolve be strengthened with joy. Each day is a gift, each moment an unfolding petal with the fragrance of Life! Live your life well!

commitment to helping

2/8/11 Tuesday

Raven and I went to feed the horses, Cookie Dough looks good, though he is shedding a ton!

I need to remember to focus and narrow down my tasks and interests, do not know if this is possible. We need to simplify our days and create the room for balance.

Jewel went to the Shriners out reach clinic this morning, she was fitted with her new AFOs but we did not get them today. They need more adjustment and then they will mail it out to us. We are looking forward to this. Getting Jewel's foot in neutral and being able to stand with the support in the proper places is very important for successful standing and weight baring!

There are so many things that need doing, planing, organizing and so many good things yet to experience. Just not enough ours in a day or energy in a body. I am coming to realize that I can not do everything at once. There is planing and different things to be done for different seasons of our lives. It is consistency we need to work on and remember to have fun!

quotes that inspire today;

"It is the nature of man to rise to greatness if greatness is expected of him" -John Steinbeck

It is often the boring repetitive sharpening of our skills that will ultimately enable us to reach our goals. -author unknown (found on the wall of Baldwin high school band room).

The TV news is on and so much pain in the world, my contribution is to love and nurture my children. Provide for my family. Keep believing for Jewel to be strong and mobile as we commit to helping her reach this goal. We love our children and they know that they are valued and loved, admired and respected.

How does your garden grow?

2/7/11 Monday Reflections;

I trust that we are doing the very best for Jewel. The right people who can help her are in her life and as needed will come into her life. I do not want to always be thinking that the grass is greener somewhere else. When I watched The Horse Boy documentary, I realized that most of us can not just pack up and go to the ends of the earth. We have to pray to see the help that is here around us. Become aware and ask for help. I do not want a lot of the help that most people get. We home school our children, we do not subscribe to all the drugs and medicine that is out there. If one of our children needs medicine or surgery, we check every other stone out there to check out all the options. If we can go natural and non invasive that will always be our first choice. I had a friend tell me that I am making my choices for Jewel based on pride and fear. I have looked at this and some times fear based choices are appropriate and I am certain that my family is doing what is best for Jewel at this time. I do not see how strangers in a class room can do better than what we are doing for her. We honor the complete child; soul/spirit/body/mind. I know Jewel best and I am confident in this. We love our children. They are happy, healthy children who are loved and are able to love. They know they are loved.

A hand full of people keep telling me to take her into the ocean. I understand that the ocean is healing and full of good ions. Beware of good advise and never parent out of guilt. For guilt is useless. I am doing the best that I can and going into the ocean every day with Jewel is just not where we are at. Yes water does relax her but we are working on foundational movement to crawling and strength training for riding Cookie Dough. I know that all these people give advise out of good intentions, but they would not last long in my shoes. They would farm Jewel out to school, rasped care and other care givers and services. I am proud to stay that for the past ten years we as a family have cared for Jewel's every needs. We pay for the O/T, speech, P/T and dentist, doctors of our choice all out of pocket. I respect these professionals who have dedicated their lives helping children like Jewel. I am eternally grateful for their help and aid. They have come alongside us in this tremendous and worthwhile journey called life. Life is such a gift. So unless you are able to put your money where your mouth is and help a family, be careful of judging them, giving them unsolicited advise. Unless you are willing to help take Jewel to the beach, why don't you just go to the beach. My father has never helped pay for any of her medical care yet he always says, " is she every going to walk!". The answer is YES Dad, and to everyone else. JEWEL WILL WALK! They said she would never nurse and she did for four years, they said she would always need oxygen assistance and she was off this after a month at home! I am not gonna listen to the unbelieving and the small minded and the negative words of whomever. I believe in miracles, in things yet not seen :) Jewel is a miracle and a gift. Thank you God for Jewel! My children are a gift!

I have learnt to delight in them. Jewel belongs to so many, for so many carry her in their heart as they believe with me for her health, stability & mobility. So many have prayed for her during my pregnancy and in the hospital and during her life thus far. The greatest gift one can give for another is to pray goodness for them. Thank you for all the prayers. Keep praying, keep believing, never tire from doing this sacred work.

Practice

2/7/11 Monday

Jewel had work done with the body worker John, thank you John. It seems Jewel gets so relaxed after a session with the massage therapist or body worker she has an accident. Note to self, take Jewel to the bathroom before and after these sessions.

She had a great O/T session, working on strengthening hips and working on pushing off from sitting on knees to standing on knees position.

Diagonal movements, rolling, mid line control.

Working on reading, slow to recognize all letters and words today, Jewel was a bit frustrated. Raven and I persevered through the lessons and we all lived through it.

It is dinner time. Hope you have a great meal awaiting to nurture and nourish your bodies too. :)

Breaking bread with the family is good.

Birthday planning

2/6/11 Sunday

When I asked Jewel what she wanted to do for her birthday, she said " Ava come, Dwagon cake".

And that is exactly what we did, we invited her friend Ava to come celebrate Jewel's birthday and we made a Dragon cake for her. It took three practice drawings on paper, one practice with icing on a plate, and then scraping it off the cake three times before Jewel was content and it looked more like a dragon than a grasshopper! Friendships are important, they come as gifts in many forms and personalities but they are the fragrance of life. We all need to take time to have friends and nurture our friendships :) Some of the Aunties came because with out Aunties life is grey and dull. Aunties are important. All these women love Jewel and the female energy was so wonderful and so powerful and healing. A safe circle. This was one too many female for Gary so he feed all the Aunties hot dogs and left us to our bonding. I wish I could invite every one I love but I do not do well in groups, I am more of a one on one & small group person. Jewel got the most perfectly thoughtful and wonderful gifts, and Grace was right there sitting at her side. Grace is the best "sister" and Nanny to Jewel, well she is also a Dwagon now, but a lovely addition to our family and another faithful friend to Jewel! I encourage you to prioritize time with your friends because they are important to you soul's well being.

Contentment

2/5/2011 Saturday

I woke up this morning feeling happy and content. I was not tired. I believe it is because my spirit was uplifted by watching The horse Boy documentary of the Isaacson family. This family travel to the end of the earth for their son's healing. The father believes and so does the mother or else they would not have gone to Mongolia to the horse shamans. Their son Rowan has the autistic label. The parents want healing for their son and each one verbalizes a wish, the father for the son to be able to ride on a horse independently and the mother wishes that her son can use the toilet to go number two. Their doubts come up along the journey yet they are still united as a family which is their strength. Rowan is healed of his tantrums and incontinence. He integrates in play with other children in Mongolia. Upon their return to Texas Rowan learns to ride a horse independently. Their dreaming, believing paid off! In the process of their journey the parents come closer to each other and watch a miracle happen as Rowan goes to the bathroom with intention :)

This fueled my spirit because it validates that the impossible is absolutely possible, just do not ever give up and keep looking and believing!

Tonight we watched Secretariat another great movie based on a true story and once again, against all odds the impossible becomes a reality. Every one says it is soo far fetched and the odds are against this family, this horse, this woman but she keeps her dream alive and she fights for her dream and never gives up. She shows me to focus with intention and attention, walking tall and taking chances in spite of what others may say. There will always be nay-sayers. Believe any way. Narrow the focus and make every action count towards the end goal and have some fun too. We learn through the fun and good times as well.

I realized that I have a follower, thank you Anne and Makena. I think any more would make me self-conscious and edit my self for them, I do not want this. I already have so much peer pressure that I feel. Today someone said to be careful about blogging because it could be dangerous and bring on a law suit. I live on this planet, and we are all interdependent at some point with each other. I rely on the organic farmer to be kind to his cows and feed them non GMO alfalfa so that I can buy his milk. The milk passes so many hands to get to my house and I am grateful for this, thank you organic farmers! I feel it is okay to mention people and their first names and omit last names to be respectful. I am not completely isolated so to be fair to to my post I need to be honest and transparent. Mentioning the people who are woven into our circle of life is only just.

Thank you to these extreme people who never give up and keep holding on to their dreams. You give me courage and light, being a great example and inspiration to me, and showing me the hard work that is entailed in making dreams come true.

I have traveled to the ends of the earth emotionally and I am on a spiritual journey keeping Jewel healthy & happy. We are a family that does almost everything together, though my older children are growing up I will not be sad or fearful because I believe that God is good and life is wonderful. I am thankful for our lives and the journey that we are on. I know that Jewel is making gains as she sleeps right now. It is day five that she is now going all day in her big girlie panties and on this wonderful note I bid you all to dream well, dream deep, dream high! xo

Ponderings

2/4/2011 Thur.

Aloha, just a short posting.

Well I have no followers, and I have decided that this is okay because I am posting this for me as well, and if it happens to help anyone then super! I guess this is a record of sorts, makes me slow down and think, reflect, feel and just be honest. Which can be scary because I have avoided looking at certain things like the possibility that Jewel will need help, some sort of aid for the rest of her life. This appears weak and weakness makes me fearful and vulnerable, especially since this is my heart. All our children are a form of our hearts walking around being lovely, being vulnerable to the world. And it is a mother's job to protect. How can I protect, provide for her always? The big questions are daunting. So I will just take it one day at a time and hope that the good Lord leads and provides. I will celebrate Jewel's gains, how ever small, to me they will be large like Olympic gold medals!

Today and yesterday her sessions with Crystal the O/T were phenomenal. She is working on siting up on her knees and then down again, yes I will assist as little as possible, but my protecting hands will be there to help :) 

Jewel's cold is leaving her body nicely.

Old Indian Wild Cherry Bark Syrup seems to be helping.

I hope being transparent helps you be honest and enjoy being you!

congestion and O/T

2/2/11 Wednesday

Jewel is still congested. She is enjoying her new barbie mermaid and Ken's new clothes. She wants us to play barbies with her all day. Her speech pathologist came today and they had a great session. Raven always joins in to help. They are working on her R sound in words and it is coming along nicely. Beth is a great therapist, she is fun, kind and excellent. They played Trouble at the end of the session and Jewel won, for real! :)

Then the O/T came, she had a wonderful session with Jewel. I wish that I was that purposeful with each movement with Jewel. Grace joint the session and it was fun. Jewel worked real hard on her strength movements, I could tell that Crystal was so proud of her. They are a great team together, Crystal understands Jewel and can get her to do real difficult things. Jewel hardly ever whines or complains, and when she does Crystal never gets sucked into it, maybe it is because Crystal comes from a large family. This lady was born to be an O/T, she is amazingly intuitive and gifted. She is very strong and does cross over with some massage and other techniques on Jewel. We will miss her dearly when she leaves in April xo

But for now I will concentrate on being present, positive and doing the best I can with what is in front of me. Still nursing Jewels cold and it looks like it is improving!

Take care of you, maybe we will all have a cup of warm tea, come join us.

Ten

2/2/2011 Tues.

Jewel turned double digits today! A double cool and amazing 10!

She got books 3,4,5 and 6 in the, How to train your Dragon series.

She also got another mermaid, yeah Jewel! Some new clothes for ken and barbie too.

We had a nice day. Jewel got to see her body worker, I was working so Gary and Raven got to go.

John said it was a nice change with out me because I tend to hover, what ever could he mean, hee hee. I will have to work on this thing called letting go! It does not come naturally to me, I even tend to help the horse when he trips, instead of just stepping back. Jewel got to have her massage today and Jimmy said to give her a tea spoon or raw honey every morning. This is meant to wake up the digestive track and is good for the immune system. Jimmy got to work on her neck, chest and stomach. He showed Raven and I how to begin strengthening her hips, this will help eliminate pain and bring some better function to this area. So we will do this.

We had a nice BBQ at our pool and my worker aka calabash mother was there to join us. Jenny charmed her way into my families heart, as I knew she would. We took Jewel's wheel chair down to the pool, her service dog aka sister aka ' dwagon' was tethered to the pole and we all enjoyed a nice meal together. Simple is always better for Jewel, she is so easy to please.

I will have a small celebration for her on sunday, her request was a dragon cake and one friend, see so easy and simple! She knows how to have fun! Thank you Jewel for teaching us how to enjoy all the things we call simple :)

Oh I forgot, I ran into one of the fathers who has an autistic labeled son. He said that the Wii game technology has helped his son with concentration and small muscle co-ordination. He highly recommended that I try to get Jewel to one and see how she does. There are many games and the physical range needed may very from game to game. Note to self: must check out a Wii game and implement Honey in the mornings and hip strengthening into daily program. Thank you to Jimmy and John for working on Jewel, both of these men are so talented in their gifting and craft and they do not charge or take payment for working on Jewel. Blessings to you and your house hold. Today Jewel is so much better, still taking her natural medicine, eating well and had a good number two after the massage. All the laughter and good times with her sissies make for good medicine. Her relatives called today to wish her a happy birthday, which makes her feel so loved, special and connected, thank you family xx

Books and to bed.