"Mom, Dad, 3 Kids & a Gingerbread Boy" Matty's Wish Trip December 10-18, 2009

[pacrosby]

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

 

[maroo]

first!

Ok...just had to say that!


I can't wait to read this!!!!

 

[maroo]

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!

 

[twob4him]

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!!!

 

[jessica52877]

On board!

 

[pacrosby]

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

 

[kellyw8863]

Yay! I can't wait to read more!

 

[reelmom]

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.

 

[pacrosby]

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

 

[pacrosby]

Welcome to maroo and Cathy and Jessica and Kelly!!!! Thanx for jumping on board!!

Pamela

 

[MAJ RN]

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

 

[pacrosby]

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

 

[pacrosby]

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.

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

 

[maroo]

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.

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.

 

[praisehisname]

I'm really looking forward to hearing about your trip!

 

[p00h4me]

I read Maroo's report about Matty getting to meet the Gingerbread men in the Christmas parade. I'm in to read the rest of Matty's Wish Trip. You have a lovely family too!

 

[pacrosby]

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.



Ok...

Now...

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

well...I should go get some kleenex.

It was exactly that potential that changed my mind about a MAW trip for Matty. I think it met it's potential.................what do you think??? Was it the poem that had you a soup sandwich????? OMG....I've been reading that poem for years now and I STILL can't get through it without crying!

Pam

 

[pacrosby]

I'm really looking forward to hearing about your trip!

Thanx for stopping by. Here's hoping I can move through it in a reasonable timeframe. I'm afraid that when it's time to really start with the pictures I'm going to get stalled.

I read Maroo's report about Matty getting to meet the Gingerbread men in the Christmas parade. I'm in to read the rest of Matty's Wish Trip. You have a lovely family too!

Didn't maroo do a great job!! I'm so thankful for her support and participation. Her mini-TR is a nice teaser for my report!! Hopefully I'll get a few followers just from that Thanx for the kind words and nice to have you along for the ride

Pamela

 

[Joyciemc]

Looking forward to hearing all about your trip!

Also, your children are gorgeous!

 

[pacrosby]

ok....so I know I've got a lot of fluff going here and some of you are probably just saying........"lady, get on with it already, will ya????" Almost there, just hang on. We've still got that matter of where this fascination with the gingerbread men came from. Truth be told, it's not so fascinating

MAW opens the door for children as far as wish granting is concerned. Children are firefighters for a day, spend weekends in NYC living the life of a fashion model, go on cruises, swim with dolphins, and have fancy schmancy room makeovers. They meet their favorite sports team champions and hollywood celebrities. And......they go to WDW. The latter seemed the most appropo for my Matty. It wasn't really a matter of asking him what he wanted to do (although the "rules" strictly state that the wish is supposed to come straight from the child's mouth......sshhhhhhhhh). Matty wasn't really crazy about anything (crazy about "everything" yes, "anything in particular" no). Well, except Elmo....but we've been to Sesame Place countless times, ate at all the character breakfasts, hugged and cavorted with the little red furry monster AND even ridden in the parade!! I considered asking for the opportunity to visit or even be ON the show but that would ruin the magic for him so I thought better of that one. Other than that he wasn't particularly interested in sports (well, not the kind that spawn off heroes and hysteria); didn't have life long dreams of becoming a police officer or circus performer; didn't know what a hollywood celebrity was, wasn't old enough to swim with dolphins, and already loved his room. HMMMMMMMM? What to do?????

I had heard that WDW was the most common Wish fulfilled for the younger set of Wish recipients. Made perfect sense to me. Fun and frolic. Characters galore. Rides and shows. Magic everywhere. I had even heard that when a child did not have a particular wish that they were often gently 'steered' towards WDW. OK....so that relieved me of any guilt associated with not following the rules. BUT, it needed to be personalized. It needed to be Matty's Wish.

The next week I involved Matty in the 'research project'. We scoured the internet for pictures of WDW. His eyes danced with excitement. "Are we going there?" he would ask me again and again. Matty LOVES amusement parks. Dry rides/wet rides. Fast rides/slow rides. Loves 'em all. Matty had been to WDW when he was 2 and while surely he had had fun, he didn't remember diddly. This would be like the first time. OK.....so WDW it is. Next we needed to figure out 'when'. We talked alot about it. Matty's favorite time of year was, without a doubt, Christmas (Halloween's a close second). Our family makes a big to-do about the holidays and my children talk about it all year round. WDW at Christmas time????? We found more internet pictures and Matty (and I) became even more and more excited. The decorations were beautiful. And the parades!!!!!! Matty loves parades and was completely enthralled with the pictures of the parades. OK.....WDW at Christmas it shall be. Still, it needed something more to be extra extra special. Something to allow it to be specifically Matty's Wish Trip and not just a great family vacation (not that there's anything wrong with a great family vacation...........I just wanted it to be more than that). As Matty was pouring over the pictures of the parades one day (we had printed them, cut them out and arranged them in a Wish book to present to the Wish granters who would be coming to our house in the near future) I asked Matty if he remembered being in the Sesame Street parade. Of course he did! "Can I be in this parade?" he asked me pointing to a picture of MVMCP. Hmmmmmmm. The kid caught me off guard. Why, I didn't know. Could he? He laughed and laughed as he looked at all the pictures of the gingerbread men. He would laugh himself silly. They were clearly his favorites. "Do you want to be one of the gingerbread men?" I joked. "YEAH!!!!!" he replied getting all excited. "Can I? Can I?" "Oh Oh", I thought. What have I done now??????

So that is how Matty's Wish to be a Gingerbread Man in MVMCP came to be. I knew the likelihood that they could make that Wish actually come true was slim to none but we played around with the idea anyway. I bought him a Gingerbread Man costume he could wear to the parade. He loved it!! Did NOT want to take the silly thing off! I bought him little gingerbread themed Wish Trip presents (a book, a christmas ornament). I did prepare him for the likelihood he would not actually be able to be IN the parade and he was ok with that. "I can still wear my costume, right?" he would say. Secretly I was hoping that maybe they would see him on the sidelines at the parade, dressed up in that crazy costume, and react somehow. Or maybe, just maybe, I might even be able to meet someone (who I didn't yet know) who could arrange a meeting with one of those crazy gingerbread men themselves.

So now you know the story. Why we ended up in WDW. Why at Xmas time (we were prepared to wait until 2010 if they couldn't arrange it for this year). And, perhaps most importantly, why Matty decided that he wanted to be a gingerbread man in the MVMCP.

Trip dates............12/10 -12/16 with an extension OOP through 12/18.

Next up: the 12/9 evening pre-trip celebration complete with photos and video (IF we can figure out how to link that up.....could take awhile)

Hope you stick around!



Pamela

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