WELCOME TO HOLLAND

Im sure many of you have heard this.....but i felt the need to repost it in my blog focusing on the life with a special needs child.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
 

Make A Wish!

Yes I am posting 2 blogs in one day just to catch up on all the excitement this summer has held so far.
    May 22nd through the 28th. Steven, Rylan and I loaded up and headed for our fun filled trip to Orlando.  Make A Wish had us picked up in a limo at our house to take us to the airport

So we load up and head to the airport where things seemed to run perfect....we got through the gate quick and then we received a preboard pass....which was nice...

loaded on the airplane..it was too early for rylan

 The flight attendants were amazing to us.....the even gave Rylan his wings for flying for the first time!

Well after our 3 hour layover in Chicago we finally made it to Orlando where we were greeted by the cutest Give kids the world greeters

They were holding up the sign with a luggage cart for us..and helped us get our luggage and our rental car. It was late and I got a little frustrated cause we were told we needed to go to give kids the world to check in before we go to our hotel......well we did and it was neat cause they had dinner for us when we arrived......

the main building at give kids the world

We ate and checked in...we were given the orientation there as well as a huge bag of toys and books for Rylan.......then we headed to our hotel.....and crashed.

Nickelodeon suites resort

Rylan Loved his Spongebob room

the big pool outside our room

the "sliming" slide

The next morning we got up and headed over to Give kids the world for breakfast.

the gingerbread house at GKTW

Give Kids The world has so many amazing things for the kids.....one of them is they can make a pillow just for them.....so after breakfast we headed to the pillow tree and then to put his star on the roof of the castle

a volunteer helping with the pillow tree

getting his star on the roof of the castle

As we were heading to go to Disney we stopped and said hello to goofy and pluto.
 We arrived at Disney and decided to start our hour long adventure to get into the magic kingdom.......

in line for the ferry

well after a long day of rides sight seeing it was time to head out

having a blast!

done for the day

So we headed home and Rylan passed out.......so he missed the super cool sliming

When he woke up we went to dinner and got in line for the much anticipated event! MEETING SPONGEBOB!!!!!!!

The next morning we all had to get up early because we had reservations at the nick toons cafe for the character breakfast....this was one of the coolest things ever! They had all the characters come to the table and say Hi to Rylan..they even danced for him! It was a shame Rylan was a grump the whole time!

we even said Hi to spongebob again!

Then we headed over to Disney Hollywood Studios which was kinda a let down because we really couldn't ride any of the rides since they were all 3D and that is a big NO NO for epileptics.....but we were able to say hi to Mickey, pooh and the Incredibles. Rylan hated everyone.....

 

dad was forced to get in the picture

Since it was a short day we went for some ice cream at give kids the world and went back to the room to relax

our non-stop free ice cream

the boys relaxing

I was kinda glad we took that evening to relax....Rylan was starting to act strange from all the over-stimulation.
   The next day we decided to venture to universal studios. Steven and I thought the Island of Adventure had more for Rylan so we started out there.

 Rylan loved the Dr. Suess area. The people at Universal are amazing and took us behind a building to give us a private one on one with the cat in the hat, sam i am, the grinch, and thing 1 and thing 2!

After lunch we decided to go to the regular universal. We didnt stay long but Rylan was able to flirt with betty boop.....and we got to say hello to the simpsons....where i got fingered in the ear by bart.

The next day we decided to do sea world. Rylan was not found of it. He did like the dolphins and the shamu show at least.

our thing 1 and thing 2 shirts!

Even Steven was having fun!

When we left sea world we relaxed and went to the mall at the nick hotel to watch a spongebob show! Rylan loved it!

so much focus!

Afterward we headed over to GKTW because they were having christmas! So we went and saw santa where Rylan got to pick a gift afterward....watched a parade and danced in the snow! This was a very cool thing to experience......you see all the kids glowing with excitement and everyone is soo happy! There were no negative vibes it was amazing!

The next day was our official last day there....so we wanted to relax. We were able to say Hi to Curious George and the Man in the yellow hat.

Rylan LOVED George

And I was even able to take this last day to see my cousin and her girls!

The next day we headed out at 4 am. But it was great to say that Rylan got to experience all he did this trip and its a memory that will stay with Steven and I for a LONG time.

Getting Started

Well here I go attempting to blog. I felt like this is the best way to share the frustrations and fun times of having a child with Special needs. Here is alittle background.....

        

   I have a 6 yr boy named Rylan who was diagnosed with Frontal Parietal Polymicrogyria Syndrome at 2 months old. But the fun didn't start there.......in my ultrasounds they noticed Rylan's head was measuring 4 weeks bigger then his body. So they were of course watching him closely and the my last ultrasound before giving birth the tech proceeded to tell me that Rylan was going to have hydrocephalus, club feet, down syndrome....and would pretty much be going to nicu because he probably wont breath on his own..........

        Needless to say NONE of that happened and I gave birth to what I thought was a beautiful baby boy.

       2 months later I took Rylan in for his check up and the pediatrician told me she wasn't comfortable with how Rylan's head was growing and wanted a CAT scan.....so we did that. Then the phone call came....that they noticed abnormalities on the CAT scan.....they need a better picture so they want an MRI done. Well this killed me knowing my 2 month old was already going to be under sedation.

       SO we did the MRI and then I get the phone call from the doc. Asking if i would please come into his office after his last patient.....i am of course freaking out now.....scared of what i am going to be told. So I called my mom who met me there when I received the news. 

       They noticed some severe abnormalities on Rylan's brain and he is not sure what to expect...in worst case Rylan will be a total vegetable.....(yes I was really told that) Best case he will be in special ed at school. We were then referred to a neurologist who then gave us the official diagnosis. I was told to put him on a living will because his respiratory system will not be good.

        Flash forward 4 years......Rylan was doing great until a week of shots..he ended up receiving his flu shot on a Wednesday and his H1N1 on a Friday. Saturday morning I woke up to Rylan running a fever and acting strange....so i get up to get him some Tylenol and low and behold I come back to the worst sight...Rylan was having a seizure. I yell for my parents who rush in to help.....I call 911 and while im on the phone the seizure ends and Rylan's not breathing and as limp as a rag doll....my mom tells me to tell them to hurry. 

         So they send an ambulance and we are rushed to TMC where to completed our very first hospital stay.....

         That brings us up to date......Where Rylan had a very rough winter with lots of hospital stays with lots of respiratory viruses and the last one being the scariest. I chose to have his tonsils and adenoids removed to help his breathing. The only thing i can say is he is a strong kid......he was always smiling

all smiles

on mothers day this year

As Rylan has gotten older and bigger his diagnosis has changed....he will always have the PMG.......but he also has generalized epilepsy, spastic quadriplegia cerebral palsy, and Macrocephaly.  He is super big for his age. weighing in at 61 lbs at only 6 yrs old and is almost 4 ft tall! 

      But all i can say is despite the all the appointments and work Rylan requires I wouldn't change it for the world He has made me the person I am today. 

tattoo done by Jim at Fast Lane

I even proceeded to start a tattoo in Rylan's honor.  You can't see it in the picture but it starts with Rylan at the wrist with a quote that begins underneath it and spirals up the arm saying "all gods angels come to us disguised"  and leads up to an owl in a tree. The Owl is representing Rylan's intelligence and the tree is a symbol of his disability trapping it.  

     Well thanks for reading!!!!