A wish for a special little girl! Catherine's Make a Wish trip! May 17th-23rd, 2010

[kellyw8863]

Welcome! You have a beautiful family!

Another cardiac family here, though the girls' defects are relatively minor. Both girls have ASDs, and Ali has heart related autonomic issues as well. My husband carries the "Tin Man" gene, and unfortunately seems to have passed it on to both girls. He also has an ASD (surgically repaired), as does his brother and his mother (both surgically repaired). His sister's oldest girl also has an ASD. It's the main reason why we will not have any more children. We were told that if we do have another, we essentially have a 100% chance of having a child with a heart defect, and while we have been lucky with ASDs, there is no guarantee of what kind future children might have.

Ali also has severe GI issues (redundant colon and poor motility due to her mitochondrial disease), and will most likely need some type of ostomy in her future, hopefully an appendicostomy and not a colostomy, but time will soon tell.

At any rate, sorry for taking over your PTR, I really just wanted to say welcome!

Kelly

 

[wishin' on a star]

Welcome! You have a beautiful family!

Another cardiac family here, though the girls' defects are relatively minor. Both girls have ASDs, and Ali has heart related autonomic issues as well. My husband carries the "Tin Man" gene, and unfortunately seems to have passed it on to both girls. He also has an ASD (surgically repaired), as does his brother and his mother (both surgically repaired). His sister's oldest girl also has an ASD. It's the main reason why we will not have any more children. We were told that if we do have another, we essentially have a 100% chance of having a child with a heart defect, and while we have been lucky with ASDs, there is no guarantee of what kind future children might have.

Ali also has severe GI issues (redundant colon and poor motility due to her mitochondrial disease), and will most likely need some type of ostomy in her future, hopefully an appendicostomy and not a colostomy, but time will soon tell.

At any rate, sorry for taking over your PTR, I really just wanted to say welcome!

Kelly

THanks! We had no guarantees about whether or not Catherine's issues were genetic or not, so we had decided not to have any more kids based on that. God had a different plan for us, and we were blessed with our son!

You may take over my PTR anytime. Thanks for the welcome!

 

[tinytreasures]

sounds like she is a little fighter
our wish child has a minor heart problem too but we don't worry to much about him to much, it does slow him down a little bit but so does everything else so no big deal

 

[wishin' on a star]

sounds like she is a little fighter
our wish child has a minor heart problem too but we don't worry to much about him to much, it does slow him down a little bit but so does everything else so no big deal

Thank you...on my way to check out your trip report now!

 

[yinyanggirls]

Watch out! This place is so addictive! You guys have a short wait until your trip! Your family is beautiful! Catherina sounds so sweet. My Phoebe is nonverbal but people just seem to warm to her as soon as they meet. She loves people.

I am an "older woman" also, by 2 months. DH and I were actually delivered by the same doc at the same hospital but didn't meet until we were teenagers. Pretty funny huh?

Do you get to enjoy any perks of your husbands job? Free stays? That would be awesome, depending on the hotel.

 

[wishin' on a star]

Watch out! This place is so addictive! You guys have a short wait until your trip! Your family is beautiful! Catherina sounds so sweet. My Phoebe is nonverbal but people just seem to warm to her as soon as they meet. She loves people.

I am an "older woman" also, by 2 months. DH and I were actually delivered by the same doc at the same hospital but didn't meet until we were teenagers. Pretty funny huh?

Do you get to enjoy any perks of your husbands job? Free stays? That would be awesome, depending on the hotel.

Well, I'll say this much, it's not the Motel 6! No free stays, but lots of great discounts. We get to share a discount with family members and friends as well.

 

[wishin' on a star]

I'm going to try to come on today and fill in the plans we've made so far!

 

[xanphylus]

I'm going to try to come on today and fill in the plans we've made so far!

We'll be waiting!

 

[wish_upon_a_star35]

You have a beautiful famil! Your little princess is going to have a wonderful time at Disney! Your trip is right around the corner! Are you guys getting excited yet??

 

[cantwaittoseemickey]

Woohoo waiting to hear your plans!!

 

[__disneygirl]

Hi there!! I'm joining in on this great PTR. I'm inspired by your positive attitude!

Your children are adorable and I can't wait to read about your trip.

More people need to know about GKTW... they are just amazing. I hope to volunteer for them sometime in the future.

 

[yinyanggirls]

THat's awesome! My BIL is a pilot but my sister gets pretty tired of dealing with their standby policies. She drives if it's close enough.

 

[wishin' on a star]

We'll be waiting!

Okay, the weekend ended up much busier than I anticipated, so hopefully today I will have a few minutes to post some more about our plans. It's coming up fast!!

You have a beautiful famil! Your little princess is going to have a wonderful time at Disney! Your trip is right around the corner! Are you guys getting excited yet??

Thank you! Excited?!!! You bet!!

Woohoo waiting to hear your plans!!

Coming right up!!

 

[wishin' on a star]

Okay...what a crazy weekend. We thought we might have a little free time around the house, and we were just on the go constantly. The girls were exhausted getting up for school this morning! My son, in preschool, is on spring break this week. My girls go to catholic school, and they are off this Friday and all of next week. They were mad that John didn't have to go to school!!

But, we had fun anyway. Carmella and I went shopping for a few new summer clothes on Saturday. She's outgrown most things from last year, so she was pretty desperate for some new things! Then we had dinner at a friends house with the kids Saturday night. Margaritas...yummmmmm! Yesterday we went to church, and then a birthday party (bowling!), and then to Annapolis to my sister's house for dinner. Today I need a nap!

Okay, I've been working on a list of questions, but first I'll run through what we have put together so far. DH and I are both having a blast putting together plans, but I'm a little worried we are overscheduled!! I plan to be very flexible and not afraid to change things up if everyone is wiped out.

Catherine's godparents and their two boys are going to be at Disney the same time as us. They are staying at a timeshare off property somewhere. We'll have a few meals with them, and hang out a little bit.

Monday, May 17th
We haven't been given any information about airport transportation yet, except that they usually provide that. I guess it will be early, but not middle of the night early!
Depart Baltimore 9:45
Arrive Orlando 12:00
Get checked in to our villa, lunch, and spend the afternoon exploring GKTW.
5:30 Dinner at Portobello's Downtown Disney with Catherine's godparents (It was hard to find a reservation for something for all 9 of us!)

Tuesday, May 18th
Breakfast at GKTW. Hopefully catch the characters at GKTW as well before we head out for the day.
Epcot today.
We don't have any lunch reservations, so something counter service. Dinner at either San Angel Inn or Marakesh. Any opinions? I've read that the mexican fare at San Angel is not necessarily "traditional" tacos that my kids would eat? We thought the experience at Marrakesh with the belly dancers might be fun?
We'll most likely hang around and watch Illuminations that evening.

Wednesday, May 19th
This is our BIG DAY!!!
Early b-fast at GKTW.
Magic Kingdom!!!!
THe girls will do the whole shabang package at Bibbidi Bobbidi Boutique, while John hits the Pirate's League with Daddy. Then we are having lunch at Cinderella's Royal Table at 1:20.
We have an ADR for dinner at Tony's for 5:50, so we'll have to see if we use that one or just grab something faster, later since we'll have had a late lunch. We kinda figured we were better safe than sorry with more ADR's in case the kids really need a break to sit down somewhere cool and relax, rather than eating on the run. Of course, we'll stay for Wishes that night.
Then we'll head back to GKTW, and hopefully sleep very well that night!!

Thursday, May 20th
Hopefully sneak in a couple of character visits at GKTW at 8:00 am.
Animal Kingdom!!
9:25 Character b-fast at Tusker House...Catherine really wants to see Daisy, and I think this is one of the few choices for that.
I have a lunch ADR at Rainforest Cafe, but I think we'll end up cancelling this one.
Back to GKTW for dinner and Christmas!!!

Friday, May 21st
Breakfast, character greetings at GKTW.
Then, over to DHS!
It's a Star Wars weekend, and John and Dave are VERY EXCITED!! If anyone has experienced this, and can share with me what to expect, how we can get chosen for something cool, etc. I think the park will be crowded this day, but we are just going to go for it anyway.

12:30 50's Primetime Cafe
Dinner, not sure. We have an ADR at Mama Melrose's for 7:15, but we want to do Fantasmic, and I think we will be done with dinner too late. Couldn't get one of the reservations for the combo deal where you can eat and then have guaranteed seating at Fantasmic. I think we will end up eating something quick, and making sure we get seats at Fantasmic.

Saturday, May 22nd
We're not sure yet. I think the kids would like to do the horseback riding at GKTW. We may try to do Universal this day, but we really aren't sure. It's our last full day in Orlando. We may just plan for a relaxing day at GKTW, enjoy the pool, maybe go to the boardwalk or Downtown Disney. Mayor Clayton's b-day party is that evening, so we'll definitely be back for that.

Sunday, May 23rd
Departure day...
There's nothing on the GKTW schedule for that morning. I'm sure we'll be packing, etc.
Depart Orlando 2:55
Arrive Baltimore 5:15...home for a good night's rest, and back to school Monday!


PHEW!!! Okay, I'm tired just reading all this. We really want to make the most of the Disney experience this trip, so we're not planning much for any of the other attractions. If anyone can offer me compelling reasons to change this plan, I'd love to hear it. We don't want to miss out on something that would be totally fantastic! Right now, our plan is to buy one more day of Disney tickets so we can really experience all 4 parks.

 

[pacrosby]

Hi Laura!

you're off to a great start!

Don't forget that you'll need to squeeze the orientation at GKTW. They seem to be pretty consistently scheduled at 7:45 pm and 9:00 am (or thereabouts). I just noticed that you had dinner reservations off-site that first evening. You can schedule a private on if need be (we did) so keep that in mind. Just let them know you have plans that interfere with the scheduled sessions.

So no Universal or SeaWorld huh? I will try not to faint (everyone who's been on for the last few months knows what a Universal/IOA nut I am !). Have you been to them before? I don't know, obviously I'm biased but I'd caution about being so quick to forego them altogether. I mean, when will you ever have free tickets again (and front of the line access..................at US/IOA it truly is 'straight to the front')? I'd just suggest, if you haven't already, you spend time looking over their websites very thoroughly before ruling them out completely.

Just food for thought

 

[wishin' on a star]

Hi there!! I'm joining in on this great PTR. I'm inspired by your positive attitude!

Your children are adorable and I can't wait to read about your trip.

More people need to know about GKTW... they are just amazing. I hope to volunteer for them sometime in the future.

Hi Lia!! I just popped over and read your PTR, and I am so excited that a cool chick like you would check out a PTR like mine! You will get to Disney before me, so I will certainly be subscribing to your PTR and following along!

My positive attitude? I think I borrow it from my kiddos! Catherine inspires me after all that she has been through.

I cannot wait to experience GKTW...I know it will be the trip of a lifetime, and we are SO fortunate that this place exists for families like ours. I have a feeling this will be the beginning of MANY Disney trips for our family, and I hope to volunteer at GKTW when we go again.

 

[wishin' on a star]

Hi Laura!

you're off to a great start!

Don't forget that you'll need to squeeze the orientation at GKTW. They seem to be pretty consistently scheduled at 7:45 pm and 9:00 am (or thereabouts). I just noticed that you had dinner reservations off-site that first evening. You can schedule a private on if need be (we did) so keep that in mind. Just let them know you have plans that interfere with the scheduled sessions.

So no Universal or SeaWorld huh? I will try not to faint (everyone who's been on for the last few months knows what a Universal/IOA nut I am !). Have you been to them before? I don't know, obviously I'm biased but I'd caution about being so quick to forego them altogether. I mean, when will you ever have free tickets again (and front of the line access..................at US/IOA it truly is 'straight to the front')? I'd just suggest, if you haven't already, you spend time looking over their websites very thoroughly before ruling them out completely.

Just food for thought

Thanks Pamela! See, you gave me exactly the kind of info I am looking for! It's so hard with two travel days, to make time for all the parks! I will check out US/IOA websites. We were originally a little concerned that Harry Potter may be open and the crowds would be bad, but that's not happening until June, so we are okay there.

Regarding the GKTW orientation...that was a question on my list! I wish they did something mid day. It was your TR where I read that they weren't thrilled about a private orientation, right? I'll have to think through this day a little more.

 

[wishin' on a star]

So, it's raining today...

No doubt many on the wish thread have read this before. But when I'm feeling as if my spirit may be broken, these are the words I read.

Life isn't always easy. We have been dealt challenges that often seem unfair. There are still days that I don't want to get out of bed and face the challenges of the day. I dread making doctors appointments that may bring bad news. I'm tired of making teachers and friends aware of the fact that Catherine has limits in the things she can do. It's not always flowers and rainbows around here. The stresses of a special needs child on a family are sometimes overwhelming. I definitely DON'T feel like a saint every day!

But, I still love......unconditionally. And, when my spirit feels broken, there are days where I have to dig deep to remind myself that I am blessed. And, God would not have blessed me with a special needs child, if he wasn't going to stick around to help me through it.

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

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

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

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "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 won't 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 for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and 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"

So...rain, rain go away...I'm ready for a sunny day! Catherine's going to Disney World! Thank you Make a Wish for bringing my daughter's dream to reality! She deserves it!!

 

[__disneygirl]

Hi Lia!! I just popped over and read your PTR, and I am so excited that a cool chick like you would check out a PTR like mine! You will get to Disney before me, so I will certainly be subscribing to your PTR and following along!

My positive attitude? I think I borrow it from my kiddos! Catherine inspires me after all that she has been through.

I cannot wait to experience GKTW...I know it will be the trip of a lifetime, and we are SO fortunate that this place exists for families like ours. I have a feeling this will be the beginning of MANY Disney trips for our family, and I hope to volunteer at GKTW when we go again.

I'm so happy YOU are reading MY PTR!! lol! Yours is so great!! Thanks for reading mine

It is so nice to hear you get your positive attitude from your kids. I love hearing that so much

 

[Mtopher4]

I Love thast poem.. It got me through the early days. I never thought I could handle a child with special needs but now that I have her.. I can't imagine my life without her. It is hard We do what we have to do as parents.. and it does not feel saint like does it?

You will be at Disney on my 40th birthday.. did I say 40

I can't wait to read your TR

Now we wait LOL