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Old 12-26-2009, 04:52 PM   #1
pacrosby
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"Mom, Dad, 3 Kids & a Gingerbread Boy" Matty's Wish Trip December 10-18, 2009

Hey all!!!!

Merry day after Christmas!!!!!

Here's hoping this day finds you all happy and healthy and relaxed. The hubbub is over. The presents have been opened, the hamster has been eaten, the house is a mess. BUT..... the luggage is all been put away, many many photos have been uploaded and I, since I thought ahead, have pages and pages and pages (and pages) of notes from a most recent Wish Trip for my little ball of fire (that'd be Matty............"Murphy Junior" to some - more on that later). What to do now???? Why, write a trip report of course!!!!!

Well, at least I can get it started right? (this could take a while!)

Some probably have been introduced to my little family and our most recent adventure from my PTR and/or from my new good friend Maroo's wonderful accounting of Matty's Wish come true (thanx again Maroo) . But in case there is someone new who jumps on board here I shall start from scratch with this one and include an introduction to our family and some background on how and why this Wish Trip came to be. Of course feel free to skip this part if you've read all about it (or perhaps simply couldn't give a rip about such pesky details). No worries, I'd understand


ok, so exactly who are we? I'm so glad you asked!!

there's me "Mom" - a whoppin' 47 yo (48 next month) stay-at-home mom who worked as a speech/language pathologist for 15 yrs before deciding that having and raising my own family would make for a much more rewarding existance than participating in the rat race my career had entered me into. I love all things decor and design. I also love to plan parties, events/activities for my family. I have been dubbed "Julie McCoy, cruise director" (anyone old enough out there to remember Love Boat????)

dh 'Stephen' otherwise known as 'Dad', 45. Dh has his own insurance business and is one of the hardest working men I know. He is unselfish and giving and has made his wife and his children his number one priority in life. Stephen is very even-tempered and the rational one. I'd call him 'the voice of reason'.

Olivia, my 9 year old preteen drama queen who, behind that facade, is the nicest little girl with a heart of gold. Olivia is in 4th grade in school and is quite the little artist. She also is a fabulous piano player and dancer. She is 'the performer'.

Nicholas, 8, my oh so sensitive yet sweet oldest boy, kind and caring and very much like his Dad. Nicholas is in 2nd grade and enjoys building and creating things. He really has quite the knack for figuring out how things work. We have dubbed him 'the thinker' (perhaps the 'think a little too much-er').

My adorable little Matty, soon to be 7 on January 1 (ok, so he's not really so little anymore) the Wish recipient, who is just a little firecracker! Matty is full of personality and energy. Matty likes to do it all. He is a yellow belt in karate, loves his swimming lessons, skis, rock climbs and takes tennis lessons! Matty sees the bright side of everything and his laugh, well, I've called it infectious in the past and I think that describes it best. Matty is 'the entertainer'.

Brennan, my 4 year old chatterbox. Brennan talks. And talks. And talks some more. Oh my, this adorable little boy NEVER stops talking Brennan is sweet and silly and a wee bit strong-willed. I think it must be hard being the youngest. What would I call Brennan? Hmm....how 'bout the 'wild card'.

Of course we can't forget Heidi.....our adorable almost 1 year old mini-dachsund (happily snoozing away in my lap as I type). Yeah, I know she wasn't able to make the trip but she's still part of the family!!! Heidi is 'our best friend'.

ok....so that's us. Need some pictures? I'll have to come back for that. Time for a slice of chocolate cream pie!!

Pamela

PTR Matty's Wish Trip http://www.disboards.com/showthread.php?t=2325607

Matty's Wish Trip TR "Mom, Dad, 3 Kids and a Gingerbread Boy"

"Photo Intro" - Post 6
"Why a Wish Trip. Why Now" - Post 9
"The Diagnosis" - Post 12
"You want to be a WHO in WHAT????" - Post 20
"Eve of Departure - The Celebration" - Post 27
"The Limo, the Airplane, and the #!@* Van" - Post 32
"I'm a Lover, Not a Stalker" - Post 54
"Persistance Pays Off" - Post 57
"Insert Catchy Title Here" - Post 69 TBD[/U]
"Insert Catchy Title Here" - Post 70 TBD
"Where've You Been All My Life - The Reunion" - Post 79
"Insert Catchy Title Here" - Post 82 TBD
"Thank You Kdzbear and Crystal Snow" - Post 84
"Gingerbread Cookies, Presents from Santa, and 'Hey, you must be..'" - Post 93
"Knock, Knock. Who's There?" - Post 101
"Bedtime Shenanigans With an Oversized Christmas Cookie" - Post 107

Last edited by pacrosby; 01-15-2010 at 02:14 AM.
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Old 12-26-2009, 05:09 PM   #2
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first!

Ok...just had to say that!


I can't wait to read this!!!!
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Old 12-26-2009, 05:10 PM   #3
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The hamster has been EATEN??!?

You are going to have to explain that one. HA!

You are very welcome. I am so glad I got to meet you and will TRY not to put popcorn here and start a riot for you to explain all of the magic to us really, really fast!
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Old 12-26-2009, 05:22 PM   #4
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Maroo....you beat me to it...that was my big question! We had oreo's and cream ice cream pie....yummo! Can't wait to hear more!!!
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Old 12-26-2009, 06:06 PM   #5
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On board!
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Old 12-26-2009, 07:35 PM   #6
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Introductory photos

Wow that pie was good!!!!!!!

Oh yeah, and the hamster............certainly not a REAL 'hamster'. You guys are silly. It'd be kind of tough to feed 4 kids and 4 adults on a hamster!!!! HAMster. Get it????


ok....so anyone looking for a few px?

First up our most recent family photo - sadly that would be Xmas 2006 (it's hard to find px of dh AND I). Hopefully dh and I haven't changed THAT much in 3 years






But since 3 yrs DOES (sadly) make a very big difference for our precious children, here are very recent px of the kiddos (within 6 months)

Livilu (Olivia) - she wanted me to post this px of her from this year's performance of the Nutcracker



Nicky Noodle (Nicholas)



Matty Fatty/Boo Boo (Matty)



and finally my little Bennie (Brennan)




ok, so there's the cast of characters.

More to come.....

Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Last edited by pacrosby; 12-30-2009 at 11:23 PM.
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Old 12-26-2009, 07:57 PM   #7
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Yay! I can't wait to read more!
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Old 12-26-2009, 08:44 PM   #8
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Wanted to let you know that I was at the store today and saw a gingerbread man and instantly thought of Matty. My DH is watching Shrek 2 and said there's the little boy you were telling me about when he saw the gingerbread man. So we have decided that everytime we see a gingerbread man, we will pray for Matty and your family.
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Old 12-26-2009, 09:11 PM   #9
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Why a Wish Trip. Why now.

ok, so now that you've got the "who" I guess we need to clarify the "what" and the "why" huh? 'What' are we doing? Why, we are going on a Wish Trip of course!!!!

Wait a minute. Wish Trip????? US?????? Why us?

I initially heard that Matty would qualify for a Wish 2 or 3 years ago. Two or three years ago, however, I was NOT ready to go there. I have always lived in a healthy state of denial with regards to Matty's diagnosis and accepting that he met the qualifications for a Wish Trip required us to publicly acknowledge the reality of his condition. A Wish Trip in a way is a 'statement' and it's a statement that one has to be ready to make.

Fast forward to 2009 and for some reason I am hearing more and more of children with Matty's diagnoses going on Wish Trips. So, I get alittle more curious. I research the MAW foundation. I learn about WDW Wish Trips. I learn about GKTW. I learn about how these trips are not just free family vacations. I learn about how children's/families' lives are often changed after Wish Trips. I start to think.

Matty had always been a shy little guy around unfamiliar people and places. At home he was a ball of fun, but bring him out around strangers and I would wonder "Who are you and what did you do with my Matty?????". He would never say a word. People would sometimes ask "does he talk?" I secretly wondered if he would ever come out of his shell. Matty didn't 'trust' people he didn't know. He 'worried' when we went some place he was unfamiliar with. Always suspicious and fearing the worst. This year however things started to change. He started to come out of his shell. He began to play with children other than his brothers/sister. He became less clingy. He was developing self-confidence and none too soon. Kindergarten was starting in the Fall.

During our yearly family vacation to Canada Matty was pulled up on stage during a family show to be a part of a children's game. At first he was terrified. You could see it in his eyes. But then they started the game and he played......and played.....and played.....and WON The crowd cheered!!! He stood alittle taller. The host interviewed him and the the crowd laughed and cheered some more!!!!! He stood even taller. Some of his answers were unexpected and truly funny. The crowd clapped and hooted and hollored again!!!!! He stood taller still. The host gave him a gift card for a toy store in the village. He was ten feet tall at that point and beaming from ear to ear! The Matty that left the stage that night was not the Matty that went up on that stage. He had grown. And, the next night, he volunteered to go up and play again!!!!!

Two weeks later we went for a weekend at Sesame Place in Pennsylvania. Sesame Place is one of our FAVORITE places to be. The whole family is completely and utterly enamored with those creatures. Elmo is Matty's favorite and he's collected quite a few of the furry red monsters over the years. This year was extra special. Matty got to ride on the Elmo float in the parade!!!! There he was in all his glory....waving his maracas......smiling at the crowd! Was that really MY Matty? It was then that I realized the time was indeed right to look into that Wish Trip for this wonderful little boy. He was at a time in his life when he was coming into his own, developing a true sense of self and going out there into the world.....without ME A Wish Trip, a trip where he could be a star, where dreams could really come true............................could the timing have been any more perfect?????????

Pamela

Matty's PTR http://www.disboards.com/showthread.php?t=2325607

Matty's TR http://www.disboards.com/showthread.php?t=2356739

Last edited by pacrosby; 12-30-2009 at 11:25 PM.
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Old 12-26-2009, 09:18 PM   #10
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Welcome to maroo and Cathy and Jessica and Kelly!!!! Thanx for jumping on board!!

Pamela

Last edited by pacrosby; 12-26-2009 at 10:39 PM.
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Old 12-26-2009, 09:29 PM   #11
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I am in for your trip report!! Your children are just beautiful. Prayers for Matty and your family and happy to hear that he is doing so well!! Can't wait to read more and see what everyone thought of GKTW and WDW!


Melissa
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Old 12-26-2009, 09:52 PM   #12
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The diagnosis.

ok....so we've covered the who and the what and some of the why? To complete the why I suppose I should reveal what diagnosis actually qualifies my little boy (I figure there's bound to be someone who will not have read my PTR). So to save time I shall cut and paste a bit from my previous thread.


Matty has Hypoplastic Left Heart Syndrome.

Hypoplastic Left Heart Syndrome. What the heck is that you say? In simple terms a life-threatening congenital heart disease characterized by a complex set of heart defects incompatible with life. The most prominent defect is an underdeveloped and, as a result, nonfunctional left ventricle; hence the name "hypoplastic LEFT heart". Left untreated a newborn baby will die within a week. The treatment? A series of open-heart surgeries (generally 3, sometimes more depending on complications) within the first 3-4 years of life OR a heart transplant. Until the 1980's all babies born with this condition simply died. Today's surgeries now give these babies a chance at life. They are not a cure per se. Their hearts are not fixed. Essentially Matty lives with a half of a heart and there's still alot of funky stuff going on with the half that's there. But it works. The surgeries manipulate the anatomy and physiology in such a way that the heart does what it needs to do to support life. For how long no one is quite sure yet. But at this point in time he is doing quite well and doesn't have the appearance of being ill. I don't think too much about tomorrow. Today he is here. He's living the life of a normal little boy. That's a gift in of itself.


Thought I'd share a poem that is very special to those who have been touched by HLHS.

½ OF AN ANGELS HEART
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.

One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little
angel that everything will be okay, and that she is just going for a visit.

She is still not swayed on this idea. So Jesus kneels down, and
says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?"

The angel smiles and says, "I guess that will work".

But the little angel is still a little scared. She asks, "Will I be
okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine."

Then Jesus gives the angel more details about his plan. He
says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart."
"Enjoy your time with your family, play and laugh everyday."

"And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."



Pamela

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607

Last edited by pacrosby; 12-30-2009 at 11:26 PM.
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Old 12-26-2009, 10:39 PM   #13
pacrosby
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Quote:
Originally Posted by reelmom View Post
Wanted to let you know that I was at the store today and saw a gingerbread man and instantly thought of Matty. My DH is watching Shrek 2 and said there's the little boy you were telling me about when he saw the gingerbread man. So we have decided that everytime we see a gingerbread man, we will pray for Matty and your family.
Welcome!! Yup, that was the gingi costume from Shrek! I was so lucky to have found it. I'll never be able to look at gingerbread men again without thinking about Matty and his Wish Trip and all the magic that occured. Thanx so much for the kind words and prayers.

Quote:
Originally Posted by MAJ RN View Post
I am in for your trip report!! Your children are just beautiful. Prayers for Matty and your family and happy to hear that he is doing so well!! Can't wait to read more and see what everyone thought of GKTW and WDW!


Melissa
Welcome Melissa. Great to have you on board! This TR is likely to be a looooong one. Hope I can finish it before everyone loses interest LOL The limo hasn't even arrived yet and I'm almost on page 2!!

Pamela
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Old 12-27-2009, 01:16 AM   #14
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Quote:
Originally Posted by pacrosby View Post
ok, so now that you've got the "who" I guess we need to clarify the "what" and the "why" huh? 'What' are we doing? Why, we are going on a Wish Trip of course!!!!

Wait a minute. Wish Trip????? US?????? Why us?

I initially heard that Matty would qualify for a Wish 2 or 3 years ago. Two or three years ago, however, I was NOT ready to go there. I have always lived in a healthy state of denial with regards to Matty's diagnosis and accepting that he met the qualifications for a Wish Trip required us to publicly acknowledge the reality of his condition. A Wish Trip in a way is a 'statement' and it's a statement that one has to be ready to make.

Fast forward to 2009 and for some reason I am hearing more and more of children with Matty's diagnoses going on Wish Trips. So, I get alittle more curious. I research the MAW foundation. I learn about WDW Wish Trips. I learn about GKTW. I learn about how these trips are not just free family vacations. I learn about how children's/families' lives are often changed after Wish Trips. I start to think.

Matty had always been a shy little guy around unfamiliar people and places. At home he was a ball of fun, but bring him out around strangers and I would wonder "Who are you and what did you do with my Matty?????". He would never say a word. People would sometimes ask "does he talk?" I secretly wondered if he would ever come out of his shell. Matty didn't 'trust' people he didn't know. He 'worried' when we went some place he was unfamiliar with. Always suspicious and fearing the worst. This year however things started to change. He started to come out of his shell. He began to play with children other than his brothers/sister. He became less clingy. He was developing self-confidence and none too soon. Kindergarten was starting in the Fall.

During our yearly family vacation to Canada Matty was pulled up on stage during a family show to be a part of a children's game. At first he was terrified. You could see it in his eyes. But then they started the game and he played......and played.....and played.....and WON The crowd cheered!!! He stood alittle taller. The host interviewed him and the the crowd laughed and cheered some more!!!!! He stood even taller. Some of his answers were unexpected and truly funny. The crowd clapped and hooted and hollored again!!!!! He stood taller still. The host gave him a gift card for a toy store in the village. He was ten feet tall at that point and beaming from ear to ear! The Matty that left the stage that night was not the Matty that went up on that stage. He had grown. And, the next night, he volunteered to go up and play again!!!!!

Two weeks later we went for a weekend at Sesame Place in Pennsylvania. Sesame Place is one of our FAVORITE places to be. The whole family is completely and utterly enamored with those creatures. Elmo is Matty's favorite and he's collected quite a few of the furry red monsters over the years. This year was extra special. Matty got to ride on the Elmo float in the parade!!!! There he was in all his glory....waving his maracas......smiling at the crowd! Was that really MY Matty? It was then that I realized the time was indeed right to look into that Wish Trip for this wonderful little boy. He was at a time in his life when he was coming into his own, developing a true sense of self and going out there into the world.....without ME A Wish Trip, a trip where he could be a star, where dreams could really come true............................could the timing have been any more perfect?????????

Pamela

Matty's PTR http://www.disboards.com/showthread.php?t=2325607

Matty's TR http://www.disboards.com/showthread.php?t=2356739

Am I the only one that is sitting her in tears?

It is so awesome to really think about how a wish trip CHANGES a child. Gives them confidence they did not have before.

I have just never thought of it that way.

Quote:
Originally Posted by pacrosby View Post
ok....so we've covered the who and the what and some of the why? To complete the why I suppose I should reveal what diagnosis actually qualifies my little boy (I figure there's bound to be someone who will not have read my PTR). So to save time I shall cut and paste a bit from my previous thread.


Matty has Hypoplastic Left Heart Syndrome.

Hypoplastic Left Heart Syndrome. What the heck is that you say? In simple terms a life-threatening congenital heart disease characterized by a complex set of heart defects incompatible with life. The most prominent defect is an underdeveloped and, as a result, nonfunctional left ventricle; hence the name "hypoplastic LEFT heart". Left untreated a newborn baby will die within a week. The treatment? A series of open-heart surgeries (generally 3, sometimes more depending on complications) within the first 3-4 years of life OR a heart transplant. Until the 1980's all babies born with this condition simply died. Today's surgeries now give these babies a chance at life. They are not a cure per se. Their hearts are not fixed. Essentially Matty lives with a half of a heart and there's still alot of funky stuff going on with the half that's there. But it works. The surgeries manipulate the anatomy and physiology in such a way that the heart does what it needs to do to support life. For how long no one is quite sure yet. But at this point in time he is doing quite well and doesn't have the appearance of being ill. I don't think too much about tomorrow. Today he is here. He's living the life of a normal little boy. That's a gift in of itself.


Thought I'd share a poem that is very special to those who have been touched by HLHS.

½ OF AN ANGELS HEART
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.

One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little
angel that everything will be okay, and that she is just going for a visit.

She is still not swayed on this idea. So Jesus kneels down, and
says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?"

The angel smiles and says, "I guess that will work".

But the little angel is still a little scared. She asks, "Will I be
okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine."

Then Jesus gives the angel more details about his plan. He
says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart."
"Enjoy your time with your family, play and laugh everyday."

"And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."



Pamela
Ok...

Now...

I just THOUGHT I was in tears from the first post I read...now....

well...I should go get some kleenex.

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Old 12-27-2009, 06:06 AM   #15
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I'm really looking forward to hearing about your trip!
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