Skylar Jade Maxson

The Angel in Heavens Rainbow Garden
Skylar~Jade Maxson
April 27,2003~August 2,2007
4ever4
Monticello,Indiana


Has one brother/Tristan Garrett Maxson(13)
Skylar~Jade lost her battle with an inoperable brainstem tumor~DIPG(diffuse intrinsic pontine
glioma) She was dx. on May 17,2006



~~" 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"~~




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
*****************************************



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. too"

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."
www.thehj.com reporter Abby Leitz WRITTEN 2007


~~~~"RELEASING SKYLAR-JADE"~~~~~~

Skylar-Jade, my little princess,
I embrace you now with tears,
Feeling with all my senses,
I must face my deepest fears.
For as I've held you near me,
And tried to ease your pain,
I have also cried for mercy,
As I was whispering your name.
I love you , little darling,
As I've loved you from the start,
But now I face your parting,
And my world is torn apart.
For I must now release you,
To the arms of God above,
So your purpose will continue,
In the fortress of His love.
I must release you to the Father,
And now trust His plans for you,
As His own sweet little daughter,
He is making whole and new.
So "good-bye," little darling,
I must release you for awhile,
But one day there'll be morning,
And we both will wear a smile,
At last, then home together,
No more parted in this way,
When we both are with the Father,
And our tears are wiped away.
~~~~~~~~~~~~~~~~~~~~~~~~

"HEAVEN'S RAINBOW GARDEN"
by julie c vincent

I went to heaven's rainbow garden,
And saw flowers on every side,
And loveliness too great to imagine,
Where no good thing was denied.

I heard the angels, there singing,
With songs that I'd never heard,
As joy in the garden was ringing,
With rapture undisturbed.

Then I saw in the distance,
As a Glorious Light from afar,
A vision of our Loving Jesus,
Who heals every broken heart.

He was there in the rainbow garden,
Beside the fountain of Life,
To welcome all of His children,
And sing them songs of delight.

He was there with arms extended,
Reaching to give each a hug,
To give them treasures unending,
That could only be found in His love.

He was there to gather the children,
And remind them there'd be no fear,
As they came into His rainbow garden,
Where every sorrow would disappear.



"But as it is written, 'Eye hath not seen, nor ear heard, neither have entered into the heart of
man, the things that God hath prepared for them that love Him. But God hath revealed them unto us by
His Spirit: for the Spirit searcheth al things, yea, the deep things of God." II Corinthians 2:9-10

I wrote this poem with prayers for Connie Jo Maxson whose little Skylar Jade now rests in Heaven's
Rainbow Garden.

God once made His garden perfect down here, but sin came and that garden is no more. Now there
awaits one more lovely than we could imagine. The Lamb is the Light and the beauty defies
description. Whatever we have here cannot ever compare to the glory that awaits us in heaven.

Sharing the Love of Jesus,
Julie C. Vincent
************************************

""A GOLDEN HEART STOPPED BEATING""

God saw her get so tired,
When a cure was not to be,
So He closed his arms around her
And whispered "come to me"

A golden heart stopped beating;
Her gentle hands at rest.
God broke my heart to prove to me
He only takes His best.

In tears I saw her sinking,
I watched her fade away.
I felt my heart was broken:
She fought so hard to stay.

But when I saw her sleeping.
So peacefully free from pain,
I could not wish her back
To suffer that all again.

So keep your arms around her Lord
And give her special care.
Make up for all she suffered
And all that seemed unfair.

So many times I've needed her,
So many times I've cried....
If love alone could have saved her,
She never would have died.
*****************************

HERE ARE SOME OF HER OTHER WEBSITES~~(IF THERE ARE ANY SPACES IN ANY OF THESE ADDRESSES PLEASE
REMOVE THEM AND THE LINKS WILL WORK)...THANK-YOU

www.myspace.com/angelsforskylarjade

www.caringbridge.org/visit/skylarjademaxson


http://www.mommytalk.com/view_profile/mid/3660
http://tuesdayschild.homestead.com/SkylarJade.html

http://tuesdayschild.homestead.com/SkylerJPhotos.html

http://rememberedbyus.com/SkylarJadeMaxson/


www.icouldbeyourchild.org (to learn about DIPG children)


www.skylar-jade.virtual-memorials.com (my newest work in progress for her)


~~"If love alone could have saved you...
you never would have died~~"