Brayden's Star

One little star, one special place.

Arriving at Give Kids the World, Brayden was given a star.  A little star that will always be a part of Give Kids the World.

Here is how it works...

Upon arriving at the Village each of our Wish Children receives a golden star along with an invitation from the Star Fairy to bring the star to our Enchanted Castle of Miracles. Once there the children sit at a mushroom table that appears to have grown right through the Castle floor. They write their name on the star, close their eyes, make one very special wish, and then place the star in the Star Fairy’s wooden chest. With animation, twinkling lights, and pure magic the star disappears from the chest with a promise that the Star Fairy will gather up all of the stars each day, capturing all of the treasured memories the children have made, and place them in the Castle sky that night.

The next day the children, along with their families, rush to the castle to locate their star, knowing that they now have a permanent place in the Village and our hearts.

Brayden's star is in the Castle of Miracles, just above the entrance into the Jolly Hollow. 

 

The entire ceiling of the Castle is covered with thousands of stars.  Thousands of children have come to Give Kids the World, a place for children dealing with life-threatening illnesses and their families.  Stand in the middle of the castle, look up at all of the stars twinkling from the lights in the rooms...it feels magical, a sense of warm and comfort, but at the same time you cannot help but feel sadness...a smile with tears.  All of these children have battled an illness or disease or disability with pain, suffering...parents working hard to help and comfort their children and keep their family moving ahead...lives dramatically altered in doctor offices or with a test...lives that are hard and exhausting...still filled with joy and lots of love.  Gazing up to the stars, a sobering thought to realize many of these children are no longer here on earth, the star is just another imprint that they had on this world.  God has blessed us with these children that have shaped our lives in ways we could have never anticipated...little superstars in our lives.

We were also given a star to take home with us as a reminder that Brayden will always be a part of Give Kids the World and of all of the memory making moments.

A Special Little Village

I was quickly scanning through an article that came out recently about the angriest cities.  We live in Northern Virginia.  I grew up in Maryland...some how all extensions of Washington DC.  While I would not say we live in an angry area, I would say we live in a place where I would NOT consider people to be nice. 

I joke that people is this area are always going some where, doing something with a purpose and they are getting there in a hurry.  Even in the grocery store, you rarely find people wandering and if you do so, you just might get a cart on your heels.  Eye contact with strangers rarely happens unless you have done something that offended that person.  When I went to school in Indiana, at first, it was a bit jarring to walk across campus and complete strangers would look right at you and smile (at first I tended to look behind me to see if they were really looking at someone else) or driving around and people would offer a friendly wave.

I feel like I live in an area where most people tend to their own business and treat their own business like the most important one...this is speaking in general, not of everyone.

Why am I telling about this?

Well, so that you can better understand the impact that Give Kids the World had upon us.

Arriving at Give Kids the World, we quickly realized that there were always helpful staff around and many, many volunteers.  These volunteers came from all walks of life, over 1,200 volunteers a week.   Volunteers that come to Give Kids the World to serve the Make-a-Wish families.  We met college students, choosing to be there for their spring break.  Couples vacationing in Orlando who came over for a day to help.  Snow birds who heard about the place and wanted to offer a helping hand.  Companies sending a group to help.  Even former Make-a-Wish families coming back to volunteer.  Thousands of volunteers cycle through to help families they have never known and know nothing about.

Each volunteer and staff offered a warm smile and helping hand, whether operating the carousel or getting us a drink.  Then I started to realize that no one was talking about diagnosis, doctors, medical problems...there was never question about what brought us to Give Kids the World.  Not one word about medical problems.  I am guessing that staff and volunteers were trained not to discuss it.  The standard questions were our plans for the day or where we were from.  It was refreshing, I spend countless hours a week dealing with and talking about Brayden's medical concerns.  At Give Kids the World they did everything they could to create an environment free from those concerns.

A big night at Give Kids the World is the Winter Wonderland.  Staff and volunteers create a special night of Christmas.  Santa and Mrs. Claus there to greet the children. 

Racks of gifts, from Santa, for each child to pick from (Brayden selected a glow worm, since it is favorite in our house and we go through them; Carter got a nerf flag football set; Luke found Transformers).

A Winter Wonderland parade.

The night was filled with sweets treats, crafts, more gifts and special memories.  Brayden was particularly found of a gingerbread stuffed animal a volunteer gave him, he kept shoving his face right up on it.

The night was not all about the gifts, although the boys were thrilled.  It was about making the experience special and magical for the families.  One morning a volunteer kindly placed his hand upon Jeremy's shoulder and said, "I know that this is supposed to be about the kids but we are here for the parents too.  You handle so much and we want to help you as much as we can during this week, it is for you as well."

Give Kids the World gives families a break from real life, a retreat.  We were touched by the kindness and thoughtfulness of complete strangers.  The care for our family even though they knew nothing about us.

If you are in Orlando and would consider volunteering...it is a gift for the families.

Perhaps the nicest little village there ever was.

Advice on Wheelchairs

We are starting the process to get Brayden a new wheelchair.  He currently has a KidKart.  I know that some people reading this blog have great experience with wheelchairs...let me know what you like and do not like.  I am looking online but not sure what to make of anything.  We are meeting with Brayden's physical therapist and the medical equipment company soon and I need ideas.

Qualities I would like to have for Brayden's wheelchair:

• Support - he needs serious support, he cannot hold his head, body, etc.
• Tilt - the chair needs to tilt from a good sitting position to reclining
• Tray - Brayden uses a tray alot, we need the wheelchair to have a tray to attachment
• Wheels - good wheels on the chair that can handle alot and not need to be replaced and make for a smooth ride
• Bus - needs to use on the school bus
• Car - need to load into a car, hopefully not by breaking down into several pieces
• Grows with Brayden - adjustments can easily be made as he grows...insurance does not like to help with wheelchairs too often

Bonuses would be:

• Canopy - Brayden is not a fan of the sun.  Having a little something to cover him would be great.
• Basket or pouch - to help lug around Brayden's gear
• Not ugly - I know this one is vain but we have a lot of equipment, if it can look nice, I am going for the nice look.  Wheelchair can look very industrial and/or instutional...we need one with pizazz.

Ok, people leave me your thoughts...it is not like I can go to the store and try them out.

Give Kids the World

While in Orlando, the Make-a-Wish families stay at Give Kids the World village.  I did not know much about the village before our arrival.

I cannot say enough good stuff about Give Kids the World.  The moment we arrived, we knew that we were taken care of.  Brayden was given a Mickey Mouse, Carter and Luke were given a little Shamu from Sea World.  We had a volunteer take us to our villa, a cute little villa.  Brayden's medical supplies had been delivered and were waiting for us inside.  The refrigerator had cold drinks ready for us.

The gift fairy had already arrived and left gifts for the boys...the gift fairy arrived everyday leaving things on our kitchen table like movies, backpacks, toys, Candyland the Give Kids the World edition...Carter and Luke were thrilled with this.  One morning I found them at the kitchen table writing notes for the gift fairy.

After we unloaded all of our gear we began to explore and continued to explore throughout the week.

Every part of Give Kids the World had a touch of something special.  The village was filled with things to do at any part of the day.  Putt-putt golf with dinosaurs, a carousel that Brayden could go on in his wheelchair, a train ride, water park and pool, video games, movies, an ice cream parlor that was open from early in the morning to late at night...every building looked magical and contained something fun to do.

Even a Spa, where little girls could get a mani-pedi or little boys could get face painting and tattoos.  Brayden got a turtle tattoo.

Dining was an experience.  We could grab a quick bite at Katie's Kitchen with food from Boston Market or have pizza delivered to our villa.  Breakfast, lunch or dinner could be at the Gingerbread House, buffets filled with delicious food (we justified all of the eating with all of the walking in the parks).

Every day, Give Kids the World had activities.  In the morning characters from Disney or Universal would come to meet the families and take pictures.  Here is one of Brayden...the photographer was delighted he was posing like Dora...in reality Brayden was having a seizure.  I didn't have the heart to tell the photographer.

At night, Give Kids the World would have some fabulous event.  The boys attended several, the first night they participated in a giant game of Candyland, later they attended the Pirates and Princesses Party...the boys became pirates, with swords and treasures.

Every event and moment was given something tangible, whether it be a photo, certificate or gift.  The village was designed around the concept of Candyland, everything filled with treats.  We had to purchase a bag to get all of our swag home.

Of our entire trip, Give Kids the World had the biggest impact on us...more on that later.

Benefits of being a Make-a-Wish Family

Being a Make-a-Wish family in Orlando comes with some wonderful privileges.

We get to stay at Give Kids the World Village...I will post about this place later, probably several posts about it because it is just that great.

Before embarking on our adventures to the parks, we are given a few things; a Give Kids the World button,  Make-a-Wish Button, and a "special assistance" pass to wear.

At Disney World, these items helped those working at Disney recognize us as a Make-a-Wish family and may need assistance.  For rides, we bypassed the long lines by either going through the Fast-Pass, escorted in the exit, or taken to the front of the lines.  The staff would then let us wheel Brayden's chair right up to the ride and give us enough time to load and unload him (without feeling rushed).  If Disney characters were making an appearance we were immediately taken to the front to meet them and given a good amount of time for talking, autographs and pictures.  Luke was even part of the Lion King show.

Universal Studios was a place that I have not been to since high school.  I remembered it to be a place of more thrill rides, so I did not expect many rides for Brayden.  However, Universal had many rides that Brayden could ride, not just in Jeremy's lap but we could load his wheelchair right onto the ride.  The staff there was so patient and helpful to get us on and off the rides, sometimes letting us go twice.  We also got special attention from the characters...Brayden even got a push from Shrek.

At SeaWorld, we were given fish to feed the animals:  string ray, dolphins, and seals.  Carter and Jeremy were the only ones to give the fish to the string rays.  Feeding and petting the dolphins was a favorite moment of mine, especially since Brayden did it too.  The few rides that we did at SeaWorld, we were taken in through the exit to bypass any lines.

Wandering the parks we would see other Make-a-Wish families, easily recognizable by their buttons as well.  We would exchange hellos and check in with their day.  There was some connection with them, instantly feeling kindness because of an unspoken understanding as to what it means to be a Make-a-Wish family.  

Those buttons and passes made our days easier and more enjoyable (otherwise I am not sure we would have enough patience for those lines).

Our Make-a-Wish

The week was action packed.  I wanted to cram in every moment that we could (a couple of days it was just too much for Brayden).  I had an itinerary in mind before we arrived, I tried to plan.

Day One -
Arrive and Give Kids the World

Day Two -
Magic Kingdom
Day Three -
Universal Studios
Day Four -
Animal Kingdom
Day Five -
Sea World
Day Six -
Back to Magic Kingdom

Day Seven -
Give Kids the World and Depart

What I did not plan for was how emotional the trip was going to be for Jeremy and I.  Being treated so special because of our special little guy was overwhelming at times.

I spent many mornings letting out a good cry in the shower.  The reality of our life hit me like a ton of bricks during the week.  We were a Make-a-Wish family...we were a Make-a-Wish family, I could not seem to wrap my head around that idea...this happens to other people not us.

Seeing Brayden on a ride in his wheelchair, riding the horse or simply being greeted by a character, got me choked up...and it did not help that when I looked at Jeremy he had tears in his eyes as well.

Giving Brayden the opportunity to sore on the rides, swim in the pool, listen to the music of the parades, just be with his family for an entire week...not to mention giving Carter and Luke the chance to be little boys, fully emerced in fun and activities, not being shuttled from place to place to accommodate Brayden's schedule and needs.  Then giving Jeremy and I the chance to just enjoy our children...no concerns about work, doctor appointments, making meals, taking care of the house...We could just be in the moment.

As we drove away the last day, tears filled my eyes and came rolling down my face.  Our Make-a-Wish trip exceeded any expectations that I could have conjured up.  I was thinking about this trip being a defining moment for our family, a week of memories that will always be treasured, Brayden's life being celebrated, our chance to step out of our day-to-day life and live, be with our family soaking in each moment, each smile, each squeal of delight and each snuggle.

Trip Highlights

Brayden's Make-a-Wish trip was an experience that I want to remember every precious moment.

It all started with a pick up at our house by a limousine.  The airport travel went pretty smoothly despite the amount of things we needed to travel (and the luggage overage charges).  Brayden did amazing on the flight.

Everything about the trip was special.  We were treated like royalty by all the staff and volunteers at Give Kids the World.  Give Kids the World is the village where wish families stay.

Every day was filled with an adventure at a park and then at Give Kids the World.  I have so much to share so I am going to try and share a little bit each day this week.

First, big moments for Brayden...

The rides...oh he loves the rides.  He could go on Dumbo all day.  So relaxed with the wind blowing in his hair.  And he went on any ride like Dumbo.  He did rides at a few Disney Parks, Universal and played at Sea World.

He also shot aliens with his daddy on Buzz Lightyear.

All characters give Make-a-Wish families some extra attention so we meet any and all we came across.  Brayden was even sprinkled with Fairy Godmother dust (from Cinderella) for his wish during a parade.

The family was able to feed the dolphins at Sea World.  The trainer then brought the dolphin right up on the ledge and we, Brayden too, could pet the dolphin nose to tail.

The final day at Give Kids the World, Brayden went horseback riding.  He did amazing.

The trip was so much more than we expected.  It was filled with memory making moments.

Home from our trip

We are home from probably one of the most amazing trips our family will ever go on.  A week of great adventure, great kindness and great memories.

I will be back with more details and too many pictures (I filled up the memory card on my camera).

Guess what I'm doing...

packing up suitcases!

Oh what a day

Brayden has been battling strep.  A fever that keeps coming and going.  What does that mean for a child who struggles with seizures?  It lowers the seizure threshold, meaning more likely to have more seizures.

Brayden started the day with a fever.  Then went into a seizure...a strange looking one where his arms and legs were contorted in a new and different way.  His arms and legs came out of the seizure but his face did not.  His face looked plastic, eyes glazed over.  Despite pinching his cheeks and moving him around, he was not responding.  We quickly gave him a diastat (emergency seizure med).  The diastat started to take effect quickly.  Meanwhile, Brayden was on the pulse ox monitor.  His breathing was in the 80s (should be high 90s/100) and his heartrate was about 160 (his is usually much lower than that).  We put him on oxygen and called the doctor.  The doctor told us to do a couple of things, one of which was to up the oxygen...that helped and in about one hour Brayden seemed to be doing fine.

This was all happening about 7:30-8:30 a.m. while trying to get out the door for Brayden's appointment at Children's in DC.  I contemplated cancelling the appointment because Brayden had a rough start to the morning but I figured and discussed with the doctor that if by the time we got to Children's and Brayden was not doing better then we would just head to the ER.  So we loaded the car with monitors, oxygen and feeding pump.

I arranged for Luke to be at a friend's house, then to school while we were in DC.  Luke was dropped off and we headed into the city.  About two hours later we arrived (much longer than it should be) a bit late...I called along the way to let the clinic know, they said it was fine.

When we arrived I realized why it was fine.  The wait to see the doctor was long.  We signed in and plopped down next to other families that had been waiting.  It was about 10:45, and one family's appointment was at 9:00 a.m., they still had not been called back.  We over heard others saying they had the same appointment time as us, the doctor was double booked!  They finally called back a few who were waiting.  We waited another 1 1/2 hrs, those families had not come out of the offices yet.  It was not looking good.  After about 2 hours of waiting, I spoke to the front desk people trying to find out where we were in the queue...we still had people in front of us.  Then I was told that once you are called back, you wait in another waiting room after getting vitals for another hour or so.  WHAT?!

I cancelled the appointment.  I do not care if this doctor is the creme de la creme and we waited for over two months for this appointment.  Waiting this long was not okay.  I rescheduled the appointment for the same doctor at a different location, told that it was not as crazy there.  I tried to complain explaining that taking a child out with multiple disabilities is hard, we have tons of doctor appointments and we cannot be a part of waiting like this...I think my feelings fell on deaf ears...I am still going to send in a complaint.

We left the clinic, headed to the cafeteria because it was 1:00 p.m. and I was famished.  Grabbed the food to go and headed home.

We were gone for a doctor appointment that we did not even have from 8:45 a.m. to 2:30 p.m.  Which left me tired and grouchy...and I still have to be a mom and wife the remainder of the day...Brayden however was in a great mood.

Oh yeah, it was an appointment to see the orthopedist about Brayden curved spine and tight legs.

Brayden aka 4 socks

Carter and Luke adore Brayden.  They always include him in so many ways.

I came down the stairs to find that Luke had pulled up a chair next to Brayden and was reading him a stack of books.  Brayden was leaning as far over as he could, to be right next to Luke.

Lately, Brayden has not be able to suck on his fingers for comfort.  Instead he has been chewing away on his hands.  In fact making them crack and bleed quite a bit, it is rather pitful and painful.  To protect his hands, we have been putting socks over his hands.  Luke has lovingly nicknamed him "4 socks".

Catching Up and Party

Brayden had his Make-A-Wish party this past weekend.  It was all about Mickey Mouse (cause we are heading to Disney!).  Brayden did great at the party.  We combined the Make-A-Wish party with his birthday since it is in April.

Just having a family gathering involves 25+ people and that is only immediate family and we invited some important people in Brayden's life.  It was wonderful.  Great food from Carolina BBQ, a cake donated by Harris Teeter, and lots of fun.

Brayden's wish grantors were so sweet and fit right in with all of the people.

After we were done eating, Jeremy and I met with the wish grantors and they gave us packets of information and all the details of our trip (love all the details).  Let me just say that Make-A-Wish does not forget one detail and makes sure the family is taken care of quite well.

It was a great party.  Oh and Brayden has a Mickey Mouse hooked up to his switch that says fun Mickey Mouse phrases.

We are ready for our trip...now I just have to pack...