Madison's Special Wish Foundation Trip/GKTW

[tinkerbellandeyor]

Wow they gave her a lot of pixie dust and the little tigger is so cute

 

[syammt]

Wow they gave her a lot of pixie dust and the little tigger is so cute

She did get a lot of pixie dust. It was so cool for her and for me to see. I didn't even realize that the picture of her and Tigger had the little Tigger in it until I was uploading it to add on the trip report. I know it is taking me a long time to get it all done, but it is kind of nice to go through the pictures and remember it all again.

 

[syammt]

Well another night of sleeplessness. Surfing the web and wasting time. Probably should be doing my work for tomorrow, but that would mean I would have to get out of bed. Anyway, while I was surfing the web I ran across a great poem that Ms. Fickle wrote. She is the founder of the foundation (A Special Wish Foundation) that granted Madison wish trip. She started this foundation in 1982 and granted the first wish out of her own pocket and it has grown from there. This family is truly amazing.
Hope you like this poem as well as I do.

“Special Children”

They’re born disguised as children,
Entrusted to our care;
They’ll win our hearts during their short stay.
They’ll bring a joy that’s rare.

Their life here isn’t easy.
Their pain seems so unkind;
Are they sent to teach a lesson
To a world they’ll leave behind?

Is their lesson one of patience?
Is that forgiveness in their eyes?
Why love and faith so boundless?
Can children be so wise?

Surely, their mission to this earth
Is to teach us how to live;
They make His plan infinitely clear-
Unselfish love will give and give and give.

Our lives are enriched while here they stay,
Our hearts embrace their mirth;
The Father’s ray of sunshine LOANED
To a very troubled earth.

Children? No-they’re not JUST children,
Certainly, children aren’t so wise;
Who are they? They’re SPECIAL ANGELS
Sent in an earthly disguise!

We’re committed to granting their “special wish”
The feeling leaves us awed;
It soon becomes apparent-
WE’VE TOUCHED THE FACE OF GOD!

Ramona Fickle, Founder
Author

 

[tinkerbellandeyor]

All I can think about is what a brave girl Madison is

 

[tinkerbellandeyor]

She did get a lot of pixie dust. It was so cool for her and for me to see. I didn't even realize that the picture of her and Tigger had the little Tigger in it until I was uploading it to add on the trip report. I know it is taking me a long time to get it all done, but it is kind of nice to go through the pictures and remember it all again.

I know what you mean every time I think of the memories of Disney it puts a smile on my face

 

[scouthawkk]

Well another night of sleeplessness. Surfing the web and wasting time. Probably should be doing my work for tomorrow, but that would mean I would have to get out of bed. Anyway, while I was surfing the web I ran across a great poem that Ms. Fickle wrote. She is the founder of the foundation (A Special Wish Foundation) that granted Madison wish trip. She started this foundation in 1982 and granted the first wish out of her own pocket and it has grown from there. This family is truly amazing.
Hope you like this poem as well as I do.

“Special Children”

They’re born disguised as children,
Entrusted to our care;
They’ll win our hearts during their short stay.
They’ll bring a joy that’s rare.

Their life here isn’t easy.
Their pain seems so unkind;
Are they sent to teach a lesson
To a world they’ll leave behind?

Is their lesson one of patience?
Is that forgiveness in their eyes?
Why love and faith so boundless?
Can children be so wise?

Surely, their mission to this earth
Is to teach us how to live;
They make His plan infinitely clear-
Unselfish love will give and give and give.

Our lives are enriched while here they stay,
Our hearts embrace their mirth;
The Father’s ray of sunshine LOANED
To a very troubled earth.

Children? No-they’re not JUST children,
Certainly, children aren’t so wise;
Who are they? They’re SPECIAL ANGELS
Sent in an earthly disguise!

We’re committed to granting their “special wish”
The feeling leaves us awed;
It soon becomes apparent-
WE’VE TOUCHED THE FACE OF GOD!

Ramona Fickle, Founder
Author

Beautiful poem. Thank you for posting!

 

[syammt]

First an update on Madison and then I will do our last day of her wish trip. kind of sad to end it. I will miss all my disboard friends. You can follow Madison on her CaringBridge page though.
We are actually headed back to the NIH on Sunday evening so that hopefully we can get her some help. She is broke out like crazy with her bumps, her ringworm is still not gone (she has had it since Aug.), her fevers at night are back, her cough is back and very productive and now she has these blood red spots on the top of her head. Her doctors here are not helping at all, so I sent her doc at NIH an e-mail and she wants to see her in person. Which is more than her doctors here wanted.
If you ask her she is fine and feeling fine, but there is something for sure giong on. I mean who runs a fever to just run a fever? And what the heck are the red spots?
She is truly the bravest person I know and is my hero.

Oh I added the link to her CaringBridge page to my signature.

 

[syammt]

was posted twice for some reason so I deleted one of them

 

[syammt]

These are a couple poems that was read ay Bryce's (a 22 month old boy that I was following on CaringBridge who passed away from a type of cancer on 1-6-11) funeral. They made me cry, but I thought they were awesome. Hope you like them.

THE CHOSEN MOTHERS

By Erma Bombeck



Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?


Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."


Finally, He passes a name to an angel and says, "Give her a child with cancer."

The angel is curious. "Why this one God? She's so happy."


"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."


"But, does she have patience?" asks the angel.


"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.

Once the shock and resentment wears off, she will handle it."


"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."


"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps -"Selfishness? is that a virtue?"


God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."


"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."





"Daddy please don't look so sad, momma please don't cry.

Cause I'm in the arms of Jesus, and he sings me lullabies.

Please try not to question God, don't think he is unkind.

Don't think he sent me to you and then changed his mind.

You see I'm a special child, I am needed up above.

I'm the special gift you gave Him, a product of your love.

I'll always be there with you, so watch the sky at night.

Look for the brightest star and know that's my halo's brilliant light.

You'll see me in the morning frost that mists your window pane.

That's me in the summer showers, I'll be dancing in the rain.

When you feel a gentle breeze from a gentle wind that blows.

Know that it's me planting a kiss upon your nose.

When you see a child playing and your heart feels a tug,

Don't be sad mommy, that's just me giving your heart a hug.

So daddy don't looks so sad and momma please don't cry.

I'm in the arms of Jesus and he sings me lullabies!

 

[syammt]

We went to Hollywood Studios for one main reason - so Madison could ride Rockin Roller Coaster. Guess what? It was closed down. She did however brave Tower of Terror with grandma. She got to to dance with the Disney Rocks show. We didn't stay long because it was hot and RRC was closed. We also went to downtown Disney so Madison and grandma could ride the hot air balloon. Then we headed back to GKTW for the Halloween party which was great and to get all packed up to head home and back to reality.

Madison and grandma on Tower of Terror.

Madison dancing with the Disney Rocks show

Madison with one of the famous Green Army Men

Hot air balloon grandma and Madison rode

Madison and grandma on the balloon

The following pictures are of Madison at GKTW halloween party

Well that is it. Thank you so much for all that have followed through this wonderful journey. Thanks for all the support and encouraging words through out this whole process. All of you made it more memorable.

 

[billwendy]

Awww - what a bummer it was closed!!!!!! But, glad you braved TOT!!! lol!!! The balloon ride looked fun too!! and the Halloween party!! GKTW knows how to do things right!!!!

Glad you had a wonderful wish trip!! I cant believe this is the end of it all!!!!!

 

[syammt]

Awww - what a bummer it was closed!!!!!! But, glad you braved TOT!!! lol!!! The balloon ride looked fun too!! and the Halloween party!! GKTW knows how to do things right!!!!

Glad you had a wonderful wish trip!! I cant believe this is the end of it all!!!!!

I know. It is like I have been visiting a friend out of town and now I have to leave. It really kind of sucks. Just hoping that some will go over to her caringbridge page and keep following along on her journey with this terrible disease.

 

[fulseasmama]

Thanks for taking the time to do such a great trip report. I loved hearing all about your amazing week and loved seeing all the big give outfits in action. We are currently getting big give boxes and it is so amazing and we can't wait to wear all the lovely new clothes. I really hope things with Madison will get better and the doctors will be able to have more answers for you. Thinking of you.

 

[Emilyswish]

I can't believe somehow I missed your whole pre-trip, trip report, everything! Well, I just read the whole thing this morning and I'm so glad you all had a wonderful time with lots of Pixie-dust on Madison's wish trip!

She seems so grown up for 7, my big guy is 7 and he's not into that "teen" type stuff just yet, but I guess that's a girl thing?

I'm sorry to hear Madison is having a tough time again, I hope you are all hanging in there. We'll be thinknig of you!