Sunday, February 28, 2010

Trip Report: Day 1

How do I tell the story of our Make a Wish trip that was truly magical? I guess I'll start at the beginning!

It all began last Sunday, February 21st. The magic started when we were picked up at our house by this...

I need to say this before I go any further...the Make a Wish Organization made this trip an incredible one. I didn't think we needed a limo, but it was so fun to start and end our trip like this! The neighborhood was probably wondering what that crazy Williams family was up to at 8am on a Sunday morning!

Of course the 9 of us fit in here just fine, but our luggage needed it's own van!

This was just the luggage for the 6 of us, add the grandparents' three bags, and you need an extra vehicle! Roger from the limo company was kind enough to send a van just for our bags.

Our flight was at 10:20 out of Rochester. We got to the airport and were greeted by our Wish volunteers Mike and Nicole. They were there to officially see us off and to give us our amazingly generous spending allowance. Make a Wish made sure that we didn't have to pay for a thing throughout our trip. What an incredible blessing...

One of the first bumps in the road was trying to arrange our seats for the plane. Our tickets were booked only a few weeks in advance, which meant they gave us some of the only tickets left. The airline had our children sitting by themselves in seats all throughout the plane. Ha! So with minutes to go before takeoff, we worked with the gate agent to have our seats reassigned. We went with the buddy system...Grandpa/Brady, Grandma Sandy/Cara, Grandma Kathy/Eli, and Meg/Matt/Allie. Oh yes, Allie. We did give her a dose of the anti-nausea medicine Zofran. She fell asleep during the limo ride and even on the plane after lunch!

You should have seen us getting through security! We had to take all of the kids' shoes off, their coats off, plus all of our own shoes, coats, and carry-ons. The buddy system worked great!

All of the kids did great on the plane and by 1:30 we were in Florida! Our next stop was to pick up the rental van. We joked leading up to the trip about our enormous passenger van...but the joke was on us! We barely fit all of the luggage and all of us in that huge van! It was packed completely full and we just had room to sit.

And check out this pile of luggage!

And now the picture that every Disney-bound family takes on that first day! We had more excitement in that van than the Griswold Family had as they ran to the gates of Wally World! We had arrived!
So...just where did Make a Wish have us stay for the week?

Here! At Disney's flagship resort...The Grand Floridian! It was stunning, impeccable, and I can't say anything else but WOW!

The Grand Floridian is a huge resort that is part of Disney's Deluxe group of places to stay. It is located right across the lagoon from the Magic Kingdom and you can access the monorail system right from the resort! This made our days at Disney so wonderful. We were able to easily come back to the Grand halfway through each day so that the kids could nap. Then we headed back out for dinner and evenings of fun! I made everyone wait outside in the hallway before entering our room so that I could take pictures. I knew the rooms would never look the same again!

Our rooms were located in Big Pine Key, a building that was a short walk from the main building. We were so fortunate to have 4 rooms for the 9 of us. My mom had a room on one side of us, my in laws had their own room on the other side of us. We were sandwiched in between them in two of our own rooms. I called the resort the day before we left and found that our family of 6 was slotted to be in one room. With two queen beds, 1 crib, and 3 pack and plays, I just didn't see how we would all fit in one room. The person I spoke with at the Grand Floridian agreed, and he asked his supervisor if they would allow us to have two adjoining rooms to accommodate our family. The supervisor agreed and the two side by side rooms were a huge blessing throughout the week! The kids had their own space and we had ours. During nap time and at night, they could have a quiet dark place to themselves. The best part was that when they were loud and crazy, we knew that the grandparents were on either side of us...not other resort guests!

Did I mention we had balconies that overlooked the lagoon...

Ummm..yes...we had a view of Cinderella's Castle from our balcony! It was so breathtaking to wake up to that view every morning. Listening to the Cara say, "Wow! Cinderella lives there!" just melted my heart!

The kids got adjusted to their new surroundings pretty quickly! Here is Allie jumping on the bed!

That night we had dinner at a quick service place called Gasparilla's at our resort.

Throughout our trip report I'm going to give reviews of the places we ate and the attractions we saw. I know several people who are planning Disney trips and I hope our input might help them and others plan their trip! I'll use a star system. One star (*) will be the lowest rating and four stars (****) will be the highest rating.

Gasparilla's is a 24 hour spot where you can grab a quick meal, drink, or snack. I give it two stars (**) because although it was convenient and the food was adequate, the arcade games didn't make for the best atmosphere. I will say that there is lovely seating outside on the patio with beautiful views of the castle.

The grandparents headed back to the rooms with the kids to get settled for the night, while Matt and I took off in the big, bad van for Give Kids the World Village. Give Kids the World is another organization that works with Make a Wish to fulfill Disney trip wishes which over 90% of Make a Wish kids choose. Most families stay at Give Kids the World Village which is an amazing resort (more on this amazing place later) about 15 minutes from Disney World. Given Allie's car sickness and our need to be close to our resort for naps, we asked to stay at Disney. Matt and I had to go to GKTW Village that first night for orientation since they were the ones who set us up with our Disney package. We had our orientation with about 10 other families who had arrived in Orlando that day for Disney Wish trips.

This was my first heartache moment of the trip. As I looked around the room I suddenly remembered that we weren't just any family on a vacation. We were members of a group of families who shared a commonality...we all had children with life-threatening illnesses. Everyone in that room had a story and I know some were in much darker situations in ours. Sitting in that chair, I closed my eyes and thanked God for our circumstance, for our family, and for blessing us with this trip.

We were given a few special things that night. Brady would wear a button that identified him as a Wish Child. In the end I don't think many noticed his button since he is pretty small and was in a stroller much of the time, but he thought that button was very special. We were given our 3 day Disney passes. And we were also given a special Guest Assistance pass. I called this our Magic Ticket. We were able to rent strollers everyday for free with this pass...AND...we got to use it to access shorter lines at every ride! We never waited more than 10 minutes for a ride! This truly allowed us to maximize our time at the parks!

After our orientation we headed back to our home away from home. Tomorrow we take on the Magic Kingdom!

Was it all a Dream?

You know that feeling you have when you get home from vacation?

Did that all just happen? Was it all real? How long have I been gone?

What an amazing week we had! I'm sorry that I didn't get a chance to check in during the week. Honestly, I didn't miss my computer at all, but did think that some of you would have loved an update! Sorry! We were just having too much fun!

Today we are unpacking, doing laundry, and trying to help our children readjust to the world outside of Disney. I do have a plan for sharing our trip with all of you. I took over 500 pictures and each day was packed full of memories. So I'm going to report one day at time, including pictures and reviews of that day's activities. I will include what we liked, what we didn't, and anything I can remember that might be helpful for another family who is planning a Disney vacation. Hopefully I'll be able to share "Day 1: Sunday" later tonight.

Stay tuned...

Friday, February 19, 2010

So Long!

For the first time in Steps for Brady history I'm going to be signing off for a while! In order to truly immerse myself in our vacation, I'm keeping the computer at home:) Now, that isn't to say that I might not check in at a computer lab a few times if I can find one!! You just never know!

I was thinking today about the preparations we were making last year at this time. Brady was about to start his second round of chemo and about to loose his hair. Look at how far God has brought us!!!

I am NO WHERE close to being done packing. Far from it! I have countless details to work out. There are actually quite a few details that need to still come together in regards to our transportation, accommodations, and itinerary. This is such a last minute process, I'm trying very hard to just relax and enjoy the ride!

Thank you all for the messages you have sent sharing in our excitement. And thank you for keeping our family in your prayers...for safe travel, settled tummies, and wonderful memories!
So long!

Thursday, February 18, 2010

3 Days to Go!

Okay, this momma is officially starting to flip out a bit! Three days to go and I have a lot left to do! I'm starting to feel really stressed as I try and get everything for everyone packed and accounted for.

Can you guess what is in this suitcase?

I'll tell you at the end of this post:)

Today's events kind of confirmed what I already feared. Sweet Allie has carsickness...bad! She had her 15 month appointment today, which is about a 40 minute drive away. About 20 minutes into our drive, she threw up all over. I felt terrible as I watched her become nauseous after only about 5 minutes, and then try so hard to fight it off. By the time we got to our appointment, she was her happy self again. She did a great job with the doctor! Her height and weight are in the 75th percentile and she is meeting or exceeding all of the developmental milestones. Unfortunately the doctor could hear her heart defect (VSD) again. She had thought it resolved itself since it was undetectable at her last appointment. The doctor assured me that this is a common problem, and that we are fine in waiting until our March appointment with the cardiologist. Of course the next topic of conversation was the car sickness. She didn't have many suggestions at first, but got on her laptop and found that they make SeaBands for toddlers, so I'm going to order some of those. I brought up the fact that I still have some of the very wonderful, and quite expensive medication Zofran that we gave Brady while on chemotherapy for nausea. She researched a dose that would be appropriate for Allie, and although this is not what the medicine is usually intended for, since I have it in the cabinet, she was okay with me giving it a try. Then about 10 minutes into our drive home, she threw up again.
You can imagine we are concerned about Allie on our trip. Just in the first day alone there will be a 40 minute ride in a car, 3 hour plane ride, 35 minute van ride, and then another 35 minute ride in a van. Then of course riding the monorail at Disney and all of the rides. I'm hoping with a few of these ideas to help with the nausea that poor Allie will be able to enjoy herself:(

So far I have three bags packed and a lot more stuff to find a place for! Oh yes, speaking of bags...this is what is filling one whole suitcase...

Diapers and wipes for 4 kids x 7 days=a whole suitcase full!

Wednesday, February 17, 2010

A Welcome Distraction

Soon our family will be escaping for a while. Just what are we escaping from?

For my kids, they will have a whole entire week out of this house! If you add it up, they will be out of this house for more hours than they probably have been out in the last 6 months! They will be escaping the daily monotony of our schedule. They won't have to pick up toys, wait for daddy to get home, or wander around looking for something to do. There will be no doctor's appointments, no scans, no x-rays, just pure fun!

For Matt and I we will be escaping many of our daily chores. Just think, a whole week without vacuuming, wiping down highchairs, or doing dishes! Did I mention that I won't cook a single meal next week??!?

But as much as we will escape, we will still carry all of the worry about Brady will us on our trip. I'm having trouble forgetting that a few days after we get back we will be heading to the spinal specialist to decide on a plan to treat the deformity that has started. I know that the urine testing I have put off for a few weeks will have to get done when we get back.

I guess that is what makes the Make a Wish Foundation so amazing though. By granting this wish for our family, we will all be able to allow the distractions of Disney world to try and chase away our worry and fear. For next week I'm going to take the cancer world, tuck it in my back pocket, and tell it that I have better things to do for a while:)

By the way...did I mention that we are getting picked up in a limo?

Tuesday, February 16, 2010

First Surprise!

Tonight I was running some errands and came home to see that the Make a Wish magic has started in our house! A package was delivered to our house for Brady! Now-it is quite hard to make this whole trip about Brady, so of course we are sharing all of the surprises with each of the kids. Yes, it is because of Brady that we are going, but this has been our whole family's journey, so we are making sure that no one feels left out and everyone is equaly spoiled!

The note inside the package said:

"I want to go to Disney and I want to go right now!
But the plane won't leave til Sunday,
So I'll have to wait, but how?
If I had a little package for each day I had to wait,
I think it wouldn't be as hard!
In fact, it might be great!"

Of course inside the box were 7 wrapped gifts! Matt opened one with the kids before bed and inside was a cute car with Mickey in it. What a thoughtful thing to do for these 4 excited kids!

Just 5 days to go!

Monday, February 15, 2010

6 Days to Go!

The kids and I were busy today making preparations for our trip.

As I was folding and sorting clothes for the trip, Eli went and got his winter hat and coat. When I explained to him that in Florida it would be a lot warmer, he ran into his room and put on his baseball hat. He hasn’t worn it since last summer, but he remembered that he should wear it in the warm weather!


Allie was fascinated by the suitcases my mom dropped off for us. She would climb in them, then cry until I came a got her out!


Before dinner Uncle Andy and cousin Aubrey stopped by to let us a borrow a few Disney movies to prepare for our trip! After dinner we all snuggled up and had a great movie night…




Here is the movie we watched!   DSC_0402

Of course we hit fast forward during all of the scary “shark” scenes. The kids were still giggling at bedtime imitating the whale noises that Dory makes in the movie!

The weather report is looking up for next week! Mostly sunny skies and upper 60s to low 70s are what they are predicting now! Woo hoo!

Sunday, February 14, 2010


How do you go about packing for a family of 6? My strategy has been this. I'm considering every part of our day, and then considering what it will look like when we are in Florida. At first I started out thinking of everything we could need at Disney World. But I quickly realized I was forgetting things like bath supplies, overnight diapers, and blankets. So, I readjusted my strategy. My dining room table has become my hub for piling up clothes for each child. Of course there has been a considerable amount of shopping done since most of what the kids wore last spring/summer no longer fits them. As an aside, I'm s0 thankful for stores like Target and Kmart that are stocking spring items in the middle of winter. I used to roll my eyes at such mid-winter displays in the stores, but this year I am really grateful! The weather report looks a little dicey for Orlando next week, so now I'm thinking of layering and water proofing. No matter the weather conditions in Florida, they just have to be better than February in western New York...right?

The gift we are being given is hard to put into words. The Make a Wish Foundation is staying true to its' name...a family trip to the happiest place on Earth is a wish come true! I just can't wait to see the looks on the kids' faces when they see the Magic Kingdom! And we feel doubly blessed that we will be sharing this time with our parents. Even though they have to pay their own way, the Make a Wish Foundation has been amazing in providing discounts for their accommodations. Our wish coordinator has worked very hard to accommodate our large, yet young, family. One of the funniest things about our trip so far, is that we have a 17 passenger van as a rental car! I laughed all day long about that one! Apparently the 12 passengers were booked, so we will be piling into a big ol' van and riding in style to the resort! Ha!

I'll be sharing more details throughout the week. It is so fun to share our excitement with all of you! Can you imagine the pictures I will have to share?

Saturday, February 13, 2010

Let the Countdown Begin!

Thank you all for sharing in our excitement about our upcoming (and by that, I mean next weekend!) trip to Disney. This is truly a dream come true and a once in a lifetime gift.

Matt and I were laughing last night about our honeymoon trip to Disney. We had the BEST time ever, but throughout our trip we would complain about something that we just couldn't understand. After witnessing several toddler tantrums, watching parents struggle while trying to haul strollers on and off buses, and seeing the mob scenes that are the stroller parking areas outside of the rides....we wondered....

Why in the world would you ever take your small children to Disney?
It was then and there that we vowed...
We won't take our (future) children to Disney until they can go all day without a nap, aren't wearing diapers, and don't need a stroller...because those people are crazy!
Well, we aren't newlyweds anymore. Almost 7 years, 4 kids, and a whole-lot-of-drama later...we are taking our 4 napping, diaper-wearing, stroller-riding kids to Disney and couldn't be happier!!!
8 days to go!

Friday, February 12, 2010

Hero Brady!

I'm proud to announce that Brady is now featured on Alex's Lemonade Stand's Hero Page. You can CLICK HERE to see his sweet face and read his story. Hooray Brady!

Thursday, February 11, 2010

I've Been Keeping a Secret

I have news...BIG NEWS!
News that has thrown this house into a state of uncontainable excitement!

Brace yourselves...

Here it comes...

The Williams Family is going to Disney World!
This amazing opportunity is being provided by the Make a Wish Organization of Western NY. All children with a life-threatening illness are eligible for a wish, and we have known for sometime that Brady qualified. It wasn't until LAST WEEK that we learned that Disney was going to happen. AND it wasn't until Monday when we learned that we were officially going!
There's more! Are you sitting down?
We leave for Disney a week from Sunday!!! We will be there for a week and just typing these words gives me chills!
Details and arrangements are being finalized every minute between our Wish Coordinator and I. Have I mentioned the packing that needs to happen? Yikes!
And yes, we are bringing the grandparents with us so that we can actually have at least one adult per child and so that we don't lose a child or two along the way:)
So the secret is out! What can I say other than, God is good!
You don't ever anticipate the blessings that will come your way when a crisis hits your family. God's love for us is amazing, wonderful, and yes, sometimes surprising! When you come face to face with cancer and death, you realize that there isn't a guarantee on the birth certificates of the ones you love. In Brady's case, it certainly seems that the risks are greater, but in truth, each and every life is a fragile and precious gift.
My prayer is that this trip is a wonderful time to enjoy God's greatest gift to me here on this family!

Wednesday, February 10, 2010


It is with a heavy heart that I tell you that Erik Ludwinski passed away last night.

His noble and unwavering faith in the God that sustained him throughout two battles with Neuroblastoma is something rarely seen in a young man. The love and dedication evident in the words of his mother Donna were a huge source of encouragement for me in the past year.

Please join me in lifting the Ludwinski family up in prayer.

Thank you Erik and family for forever changing me.

Tuesday, February 9, 2010

Weird, Just Weird

I've been linking back to a lot of "last year" posts lately. Well folks, today I bring you back to Barforama 2009. If you don't remember it, I'll give you the quick recap. Brady had been home only a few days from the hospital after his diagnosis and surgery. Matt and I needed a night out, so we went to my MOPS group's Couple's Night and had a great time. When we got home, the kids all started throwing up and it was one of the worst and craziest nights ever.

Here is the weird part. Tonight was Couple's Night at MOPS for this year. Well, the barfing has once again started around here. Weird, weird, weird!

Allie got sick once around 4ish and Eli got sick 2 times after 5pm. Thanks to Grandma and Grandpa, Matt and I were able to go and enjoy Couple's Night. But now I'm basically sitting here waiting for the rest of us to succumb. I know, bad attitude, but it just never fails that when one Williams goes down, we all fall.

So my friends, wish me well tomorrow!

Beauty Beyond Comprehension

If you stop and think today about the most beautiful thing you have ever seen in your life, I wonder what images might come to mind?

Until recently, I would have recalled my wedding day, the birth of my children, or maybe even some of the faraway places I've seen.

But now, I know that God has shown me the most beautiful thing I may ever see on this Earth.

The beauty of the love of a mother for her child.
This is the same beautiful love that God showed to all of us when He sent His son to die on the cross. It is immeasurable, beyond comprehension, and heart-wrenching.
It is a beautiful thing.

Monday, February 8, 2010

Blog Counter Broken

I'm so bummed! I realized a few days ago that our blog counter is no longer active. Right after I started the blog I signed up for a service that basically tracked the number of hits the blog received every day, how many new visitors stopped by, and how many total hits the blog received since the beginning. It isn't all that important I guess, but it was cool to see how many total hits the blog has had since last year. I know it was getting close to 200,000.

So if any of you are tech savvy (which I am NOT!) please clue me in if there is a way to recover that info or if you know of another blog counter out there:) Thanks!

Sunday, February 7, 2010

Snow Much Fun!

In honor of the upcoming Olympic Winter Games, I wanted to offer my suggestion for a new Olympic event. I think I will call it the Quad Winter Challenge. It involves digging through piles of winter items to find 4 winter coats, 4 pairs of snow pants, 4 winter hats, 4 pairs of boots, and 4 pairs of mittens. The next part of the event involves wrangling 4 small children into their snow pants, coats, hats, mittens, and boots all the while dealing with impatience, frustration, and the overall feeling of being hot. Matt definitely takes the gold in this event, and myself? A distant silver…

Once we conquered the getting ready part, we had a great time outside. If Allie could talk I think she would tell you that she had an okay time. It is hard to be a baby with tiny legs and many layers of puffy outwear.DSC_0340DSC_0341DSC_0342


Nobody is cuter in a winter hat than Eli!

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Cara headed right for the playground!



Just like the groundhog, Cara’s shadow was clearly seen!

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Poor Allie looked like this most of the time!


Even when she was tipping over DSC_0366 DSC_0367 DSC_0368 DSC_0370 DSC_0372

What a crew!

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One year ago today…

How can I forget this day?

Saturday, February 6, 2010

Fine, We Did It

Rather than risk another potentially serious head injury, we bought toddler beds tonight.

I didn't want to.

I don't like new stages when it comes to the kids.

They are safe in their cribs (other than the falling out on their heads part). They look cute in their cribs. They have been in those cribs since the day we brought them home from the NICU. And most importantly...

They can't get out of their cribs (okay, so they *could* get out, but I mean not easily and without a considerable amount of risk-taking).

Those cribs represent a safe haven for my sweet little babies and taking them down makes it perfectly clear to this momma that my babies are growing up. Errrrrr....I don't like it one bit!

I was telling my mother in law of the numerous horror stories I've heard about the triplet-transition into toddler beds. Most of the triplet parents I read about online have to remove EVERYTHING from their kids' rooms other than the toddler beds. As you can imagine, giving three toddler-monsters the ability to get out of their beds while they are alone in their room is a sure-fire recipe for disaster!!?!?! Errrrrr....I don't like it one bit!

I will of course update you all as we make this transition. It won't be for a few days as we had to order Cara's bed online. So, I have a few more days to get used to this idea :)

An area for prayer: I have been doing a lot of reading about other NB kids like Brady (Stage III, intermediate risk) in the message forum I belong to. The topic of scanning schedules came up and I am surprised to learn that kids just like Brady have a more intense and thorough post-treatment scanning schedule than he does. For example, many kids are getting a MIBG scan done quarterly. If you remember, Brady had this test done diagnostically in those first few days. It involves being injected with a slightly radioactive substance that is taken up by areas active with NB. In some of the cases I've been reading about, urine levels have been normal despite a relapse being present. And in other cases, a relapse was only detected on the MIBG, not with MRI. So, you can imagine my uneasiness about only relying on MRI and urine tests. On one hand, I want to limit Brady's exposure to radiation, especially given how often he will need XRAYs because of his spinal deformity. But, I also want to make sure that we aren't missing something. Matt and I have been discussing this and trying to decide if we want to push the issue with our doctor and get more in depth testing done at Brady's next scan date (April.) Thank you for your prayers as we continue to deal with many post-treatment issues.

Friday, February 5, 2010

A New Tradition

I've realized in talking with many other moms who have kids the same age as ours, that many toddlers enjoy watching movies. Now my kids have a handful of favorite TV shows (Caillou, Super Why, Imagination Movers, and Little Einsteins) but haven't ever watched a movie. Growing up I just loved getting lost in a movie, especially the Disney ones!

My mom gave us a few of our old VHS Disney tapes (gasp! A tape! I can just hear us now, "Back in our day kids, you had to watch a whole movie, and then rewind it if you wanted to watch it again!") So tonight after dinner we headed down to the basement playroom and Matt hooked up an old VHS player to the TV. I popped some popcorn and we all snuggled up and watched Cinderella. I LOVE the idea of us spending time together doing something I enjoyed as a child. Talk about coming full circle! We only got about halfway through before bedtime, but I think they would have watched the whole thing!

Matt volunteered to go back down to the basement tonight and vacuum up all the popcorn:)

Thursday, February 4, 2010

What We Were up to Today

The Williams family fire squad was hard at work…



Everybody HUG!



This one makes mommy’s heart melt!


No more pictures mom!


Our old house has some interesting architecture. I loved the way the kids looked sitting against the front door framed by the archway…


And I just had to snap a picture of this today. Something about the sight of four kids’ plates lined up makes me the happiest momma around!


If you want to read something inspiring today, click here to read what the Liz and Jay Scott of Alex’s Lemonade Stand have been up to.

Where we were one year ago today…