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""To Where You Are""
Who can say for certain.... Maybe you're still here.... I feel you all around me.... Your memory's so clear....Deep in the stillness.... I can hear you speak.... You're still an inspiration.... Can it be (?)..... That you are mine..... Forever love..... And you are watching over me from up above....Fly me up to where you are.... Beyond the distant star.... I wish upon tonight.... To see you smile.... If only for awhile to know you're there.... A breath away's not far.... To where you are....Are you gently sleeping.... Here inside my dream.... And isn't faith believing.... All power can't be seen....As my heart holds you.... Just one beat away.... I cherish all you gave me everyday.... 'Cause you are my.... Forever love.... Watching me from up above....And I believe.... That angels breathe.... And that love will live on and never leave....Fly me up.... To where you are..... Beyond the distant star.... I know you're there..... A breath away's not far.... To where you are......
*******TO WHERE YOU ARE(with JESUS)******
~~~~"HOMESICK"~~(by Mercy Me)~~~~
~~~~"MAY ANGELS LEAD YOU IN"~~(by Jimmy Eat World)~~~~
~~THANK-YOU DEAR FRIEND"Heather"~mommyto baby Kyle~~ ..
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~~~~~"HELD"~~~~(by Natalie Grant)~~~~~~ ..
~~~~"DANCING WITH THE ANGELS"~~~(by Monk&Neagle)
............"One More Day"..........Last night I had a crazy dream....A wish was granted just for me....It could be for anything...I didn't ask for money...Or a mansion in Malibu...I simply wished, for one more day with you...One more day...One more time...One more sunset, maybe I'd be satisfied...But then again...I know what it would do...Leave me wishing still,... for one more day with you....First thing I'd do, is pray for time to crawl...Then I'd unplug the telephone....And keep the TV off....I'd hold you every second....Say a million "I love you's"....That's what I'd do, with one more day with you.... Wishing still, for one more day!!!!!!
SKYLAR~JADE'S STORY >>>>>>>>>>""HOPE FOR A MIRACLE""<<<<<<<<< A sign is hanging above three-year-old Skylar Maxson's bed. It's been there since she entered Riley Children's Hospital in May 2006 with an inoperable brain tumor known as a diffuse intrinsic pontine glioma. The sign, printed in black on a white sheet of paper, simply reads, "Where there is great love, there are miracles." Miracles are certainly what Skylar's family is hoping for these days. Skylar's grandmother and adoptive mother, Connie Maxson, Monticello, is still in shock over her little girl's rapid decline in health due to the tumor. The afternoon of May 15,2006 Connie said she recalls Skylar was sitting on her lap and had just hopped off when it became clear something wasn't right. "When her feet touched the floor it was like the floor disappeared. She was dazed. And she had been walking and dancing around 30 minutes before it happened," said Connie. By the time Skylar could be transported to Riley from White County Memorial Hospital, she had lost the ability to walk and talk, Connie said. Things went from bad to worse when Skylar developed breathing and swallowing problems as well. "It's a whole different life now," Connie said. "She was always smiling, just her happy little self. She put my face in her hands and said 'Mommy, I love you.' That's the last time she talked to me." A diffuse intrinsic pontine glioma is a malignant tumor that originates in the supportive tissue of the brainstem. These tumors generally affect children between the ages of five and nine years, and girls and boys with equal frequency. They are rapidly growing, which explains Skylar's seemingly instantaneous reaction to the tumor. Symptoms include impaired walking, weakness in arms and legs, inability to control facial expressions, swallowing, chewing and eye movements due to problems in the cranial nerve, and headaches and vomiting due to increased pressure on the brain. Treatment for these tumors is limited to radiation and experimental chemotherapy regimens; however, the prognosis despite such measures is bleak. According to information from the Children's Hospital at Boston, children with diffuse intrinsic pontine gliomas live on average just one year past diagnosis and 20 percent survive two years. Skylar was given just six months to live as of May 2006, said Connie.(UPDATE:after new scans MAY 2007 her drs. have given her only 2-4 weeks) Amid the heartache hope remains, and her family holds fast to the fact that Skylar is entirely healthy save for the debilitating tumor. However she has already endured more than 30 radiation treatments, and the side effects of the steroids she takes to keep the tumor and resulting swelling from harming her brain. "The doctors at Riley said "ONLY God could give Skylar another day,".... "They've kept her alive but NO CHILD EVER LIVES FROM THIS TUMOR". It's very rare and there's very little research done." More help is needed than what doctors can give, said Connie's good friend June Daulton. Connie is unable to work because of her medical conditions, which include diagnoses of lupus and multiple sclerosis. Also, because any money on hand has been required for various things since Skylar's illness struck, the family has lost their home. Connie has also adopted Skylar's brother, 11-year-old Tristan, and raised him since he was three months old. "You just never know when something like this is going to happen," said June, of her best friend and young Skylar. "Connie and I grew up together; she's more sister than my sister is so I'm just trying to help them anyway I can." June has set up a trust fund for Skylar so that a trip to the Texas cancer institute might be possible(FOOTNOTE!!:Skylar~Jade was too terminal to be treated there afterall) and is helping the family find a home in the Monticello area to come back to when they leave the hospital. Although Connie herself is not in perfect health, she said she'll spend whatever energy she has helping Skylar fight her sickness. "I don't have time to get sick because she's dying and fighting. I'll fight for her as long as it takes and if she gets too tired, I'll do it for her. You just don't give up. You don't give up." www.thehj.com "Hope for a miracle" reporter Abby Leitz WRITTEN 2006
Mark5:23 And besought him greatly, saying, My little daughter lieth at the point of death: I pray thee,come and lay thy hands on her, that she may be healed; and she shall live..and Jesus said"because of your faith she is healed"..... She is forever...the Angel of Heaven's Rainbow Garden
Four-year-old Skylar-Jade Maxson loved her rainbow garden.
In fact, she spent most of her summer there, as the weather would allow, lying on a soft bed made up of layered blankets nestled in a crowd of impatiens, bright yellow and orange marigolds, purple and pink petunias, scarlet geraniums and the blushing blooms of the Mandevilla vine.Skylar-Jade would often fall asleep in her rainbow garden, a place where she was always at peace and free from the torment of the brain tumor that had robbed her of the ability to speak and function as a typical child."I wanted a place I could bring her outside," said Connie Maxson, Skylar-Jade's grandmother and adoptive mother. "She loved flowers. She loved to listen to her wind chimes, listen to her birds, feel the wind. It was peaceful for her."Though Skylar-Jade won't return to the rainbow garden at her Monticello home, ConnieJo will continue to tend and grow the garden - and spread the word about the inoperable brain tumor, known as a diffuse pontine glioma, that invaded Skylar-Jade's brainstem at the age of three.Skylar-Jade passed away last Thursday night at age four, having been diagnosed with the tumor in May of last year. The particular type of tumor that victimized Skylar-Jade is rare and afflicts about five to 10 out of every 100 cancer diagnoses amongst children medical research states. It is considered inoperable because the tumor cells grow in and around healthy cells in the brainstem, interfering with critical functions controlled by that part of the brain.When Skylar was diagnosed last spring she was given six months to live, and her family told most children live on average just one year past diagnosis. Twenty percent survive two years."No child has survived this tumor," said ConnieJo, resting on a swing on the outskirts of the rainbow garden Friday evening. "I'm going to continue to spread the word about this. If I can reach just one person who didn't know about this yesterday, then Skylar's life meant something. The world has to learn this attacks healthy children."Skylar-Jade was indeed a healthy little girl prior to last May, when ConnieJo says she simply and suddenly lost muscle strength, the ability to maintain her balance and the use of her throat muscles. Misdiagnosis is often the case with children who are ultimately diagnosed with diffuse pontine gliomas, said ConnieJo, because the symptoms can mask the greater problem. Though she knows little can be done once a child has been found with the tumor, there is much room for research and a better understanding of it ConnieJo attests.Life will be different for ConnieJo and Skylar-Jade's brother Tristan, 12, who ConnieJo also adopted, as they move away from a routine that involved constant visits with physicians, oxygen machines and attention paid to every breath Skylar-Jade took. Helping the family and their friends through their transition is Tammy Benner, a bereavement counselor with Serenity Hospice.Benner has spent time getting to know the Maxson's since hospice became part of their lives shortly after Christmas last year. She testified to the strength of the family and said that though they will be grieving for some time over the loss of Skylar-Jade, sometimes what those in mourning need is just the presence of a familiar face or voice."There's no easy answers for a child (who dies). The most important thing is that a lot of people don't know what to say, but just being there is helpful. It's not always what you say."Amber Biggs, a cousin of the ConnieJo said the family has been helped immensely by the hospice staff and have gained a greater appreciation for life and one another through Skylar-Jade's battle for life. Connie says her faith in God kept her strong for Skylar-Jade when she needed her most. It will keep Connie strong as her life continues without Skylar-Jade in the rainbow garden."I've watched God give her many miracles and we have lived on nothing but prayer for the last year. It held me up, holding a child, knowing she's leaving. And then, everything normalizes. My arms ache for her but she's showed us not to give up hope. You can be dying, but you can hope. God was there,... part of my every day and He changed us forever.".reporter Abby Leitz WRITTEN 2007
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