Well, it's taken a long time and a lot work from many many people to make my wish come true, but today the unbelievable happened!  I was face to face with the Holy Father Pope Benedict XVI.  I received his blessing and he kissed me on my head!  There aren't any words to describe what it's like to blessed by the successor of St Peter.

The trattoria where we ate lunch.After my blessing, the day continued to be great.  Our Make-A-Wish volunteer took us to lunch at a very authentic trattoria.  You knew it was "local only" since there was no English on any of the menus.  We had a great lunch and I ate calamari for the first time.  Boy...was that good!  While we were having lunch, a Bishop from the Diocese of Chicago came and asked to have his picture taken with me.  He was also at the Papal audience and recognized me. After lunch, we headed back to Vatican City to pick up my photos of the blessing from the Vatican Press Office.  They had great photographers that were right there taking pictures as I met the Holy Father.

This evening has been more relaxed.  Mom and I went to daily Mass at St Mary Major and then we did a little shopping.  Dad went back to St Peter's square to get some more photos.  My Dad is loving this city.  He says it's hard to take a bad picture here.  He's always carrying his camera and tripod just in case we stumble upon something that catches his eye which is almost EVERYTHING!!!  It's OK because he has a sleek camera backpack so he doesn't look to much like a tourist.  I bet he'll include some in this post...if I ask nicely.

Tomorrow is my last full day in the Eternal City.  We have a lot planned, but we know that we'll never see or learn everything Rome has to offer in just one short visit.  That means that I'll have to come back again which isn't a bad thing.  I really want to thank you all for your thoughts, prayers, and blessings.  Also, if you've ever considered making any charitable contributions, please consider the Make-A-Wish Foundation.  They give kids like me the opportunity to experience something very special and I really would like to thank them for this Wish.

Grazie per seguire insieme. Ci vediamo domani!

We attended daily Mass in a Chapel (the Cappella Paolina).  It is extremely ornate with statues and reliefs in wall and a marvelous dome.  Afterward, several people came to offer their prayers and well wishes to me.  I tend to have that affect on people!!!

I was getting hungry so Mom and Dad navigated us back to our hotel.  Along the way, we came across a pizzaria and decided it looked good since it advertised "Tipical (sic) Italian Food".  We had a great lunch of pizza, panini, and a cheese plate. The waitress was great.  She spoke great English which made it nice.

We came back to the room for reposa (kinda like a Spanish siesta) before heading back out this evening.  Our evening walk including the Colosseo, Circo Massimo, Arco di Constantino, and the Basilica di Santi Giovanni e Paolo.  This basilica was fantastic.  We were the only people there other than the care taker who gave us a very special tour.  After seeing the church, we headed back to our hotel.  We went back via the same route so Dad could get some night shots of the historic structures we passed earlier.  Make sure you check them out in the Gallery.

Tomorrow we'll explore the other part of the city including a tour of the Musei Vatacani (Vatacan Museum). Until then, addio!

We made it onto the international concourse and had some lunch at TGI Friday's.  The manager there was really nice and hooked me up with a complimentary dessert!  We went to the gate and checked in.  The ticketing agent asked why I was going to Rome so Mom gave her the low down.  Once she learned that I was pretty much a rock star.  She rearranged our seating so that we had a whole row to ourselves.  Everything was going planned until the weather in Italy took a turn.  They've been getting a lot of snow and the Leonardo de Vinci Airport doesn't even have de-icing equipment.  That meant that our flight had to be delayed by two hours so that we'd land later on Sunday morning.  It wasn't a huge deal and we dealt with it.  Finally the time cameCaptain of Delta Flight 240 and we boarde the Airbus A330 for our 5200 mile journey.  They let me get on first so that Mom and Dad could get my wheelchair gate checked and I could get situated before the plane was bustling with passengers.  Just as I was getting seated.  The Captain came out to welcome me aboard and tell me how great it was that a Make-A-Wish kid was going to be flying with him.  Mom said she thought he was crying...I don't know about that.

The flight was uneventful.  I slept for most of it.  When I woke up this morning (3am back home), we were in Rome.  We made it through customs without any issue and there was a driver waiting for me to take us to our hotel.  We're staying at the Hotel President.  It's a nice room but hotels in Italy are very different from US hotels.  They're smaller, the plugs are weird, etc.  It is nice so that's all that matters.

Once Mom and Dad got the room situated, we headed off toward the Colosseum to find some lunch.  Mom also wasnted to find a church so that we could be to Mass.  As we were walking down the street, we stumbled across an old church that had just started Mass.  In we went.  The whole thing was in Italian so I'm glad it wasn't a long Mass.  Then it was time to find somewhere to eat.  We continued our stroll and came across a nice little cafe.  The food was great and authentic since nearly everyone in there was speaking Italian.

As soon as we finished, we headed across the street to the Basilica de Giovanni in Laterano.  It was beautiful and Dad took a million pictures.  You can check them out in the Gallery.

Tonight, we're all going to bed early so that we can try to get on the Roman schedule.  I can't wait to see what we discover tomorrow.  Until then, arrivederci grazie!

Other than having a party, the purpose was to supply the itinerary for our trip to Rome, Italy.  Make-A-Wish has arranged a fabulous week in Rome.  The culmination of the trip will be next Wednesday when my Mom, Dad and I attend a Papal audience.  After the Holy Father's general audience, my Dad and I will get to spend a few minutes of face to face time with the Pope and I'll get my blessing from him.  We'll also get a guided tour of the Vatican.  The Vatican guide is also a Make-A-Wish volunteer so he'll have a special connection as he shows the art and architecture of one of the most historically important cities in the world.

Sunday, Monday, Tuesday, and Thursday will be for sightseeing in this wonderful and historic city.  My Dad and I have made a pact to try eat all of the pizza, pasta, and gelato in Rome!  I think my Dad's eyes are bigger than his stomach, but I'll do my best to help him.  Mom is super excited about the tour of the Vatican and to see all of the amazing churches in and around Rome.  She might even get a little shopping done.  Don't be surprised if she comes home with some Italian fashion.

The plan is for my Dad to update the blog every evening and upload as many photos as he can.  I hope you all will follow along and help me celebrate this amazing trip.  Our hotel has wi-fi and my Dad, the techie, has his iPad plus a data plan for his phone in case we're in an area that doesn't have a wi-fi hotspot.  So stay tuned!

My Mom, Dad, and I will be leaving from Atlanta in early February and we'll spend 6 days in Italy.  I can hardly believe that I'll be traveling across the "pond" as my Dad calls it.  Once there, we'll get settled in our hotel and do some sightseeing before we visit with the Pope on Wednesday.  It will be sooo cool!  How many 9 year old kids get to have a private audience with a head of state and how many kids get a special blessing from the head of the Roman Catholic Church?  I'm pretty blessed.

Please stay tuned.  I'll be making my Dad post the pictures from our trip and I'll make him do more posts so that everyone can stay up to date!

We had a great time.  All the kids were checking out my light up wheelchair wheels.  My parents hadn't been in skates in years, but they were looking pretty good.  My 2 and 4 year old Sisters even gave it a try.  I got help them learn too!  They used the handle on my wheelchair to balance themselves.

I would really like to thank the Carmike Hollywood Connection for letting me have so much fun at the skating rink!

"Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan."

A follow up article by Danny Hakim continues to illustrate how little New York State cares for the people that are entrusted with their care.  While the media provides a deluge of updates on Hollywood stars, and political pundits talk about human rights violations in far off lands such as Libya, Syria, and Egypt, we have children and adults who are trusting our elected officials with their lives.  Our tax dollars are being sent to help other countries while children, like Jonathan, are being crushed by in the back seat of a van because he was showing behavior that is consistent with his Autism.  This is happening right here in our very own country.  America, the greatest county in the world, is not preventing the most helpless section of our population stay stafe.

We need to take a stand and let the people that are supposed to protect us that it is not OK for even one more incident to occur.  Please write your Congress person and Senators and let them know that you won't stand for this.

Source: A Disabled Boy’s Death, and a System in Disarray (http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html?_r=1&scp=1&sq=New%20York%20disabled&st=cse) by Danny Hakim

After almost 4 years of waiting, I found out that my wish has been granted!  We don't know dates yet, but it will be pretty soon.  My Dad already submitted my passport application.  Once we get that, we'll start planning everything that goes into arranging a special audience with the Pope.

I'll you all know more as the details start to pan out.

Oh well, it won't be much longer until I'm 16 and can register right along with him.

Thanks for your support!

A car owned by Enterprise Rent-A-Car illegally parked in a handicapped parking space.

A lot of times, people park in a handicapped spot out of convenience.  They may have a placard or disabled license plate for a person in their family, but they park in those reserved spaces regardless of whether the family member is with them.  I've seen cars park in a accessible parking spot only to see some able bodied person get and stroll into the store with little or no regard for whether they are inconveniencing someone who truly needs a parking space with extra room or that is closer to the store entrance.

Let's face it, most Americans could use the exercise that comes with finding a parking spot that's further away.

After today's meeting, Dr. Khatri will get with a team of professionals and arrange a very comprehensive evaluation.  I will have lab work done that will assist some geneticist in looking for any newly identified gene markers that may shed light on my delay.  This is great because my last genetic evaluation was over 5 years ago and genetic research has been advancing every 2 years of faster.  Some of the test that were performed on me when I was 3 years old are now considered antiquated and no longer used.  I'll also meet with a new neurologist that specializes in metabolic disorders.  These disorders are wide ranging and their impact on the children, like me, is just as wide.  Some haven't even been discovered or named yet, but they still affect us.  Like genetics, this field is advancing just as quickly.  The last metabolic work up I had done was at Duke University Children's Hospital when I was 2-3 years old.

Included with these new doctors, will be other professionals that will evaluate and test me to see where I am in my development.  I'll meet with a developmental psychologist, occupational therapist (OT), physical therapist (PT), and speech and language pathologist (SLP).  I see an OT, PT, and SLP now but these work in the school system and are not of the same caliber that are common at teaching and research hospitals.

It will be a long and challenging road just like it was for me to get to surgery to treat my epilepsy.  We're all excited about the work that lay ahead.  My Dad will be traveling with me a lot to Birmingham, AL (our second home).  My Mom and Sisters will continue to care for me and help me everyday.  My new helper, "Miss Amy", is ready to help me on my journey too.  Miss Amy is super energetic lady that has me walking and working on my goals for much of the day.

I'll keep everyone up to date about this new and exciting chapter in My Journey...

Take some time to look through the site and see what they say about the anti-epileptic drugs you may be taking. You might learn some facts that need your doctors attention at your next nuerology appointment.

Knowledge is power...don't rely soley on doctors for information when it comes to your health or the health of the ones you love.

Source: Drug Watch (http://www.drugwatch.com/)

The doctor I'm going to see is highly recommended and wasn't accepting new patients.  My Dad had to speak to her on several occasions and encourage her to take my case on.  He was able to express how unique I am and this doctor recognized that I present a special challenge to doctors.

I can't wait to report what sort of ideas she has.

The New York Times:

A New York Times investigation over the past year has found widespread problems in the more than 2,000 state-run homes. In hundreds of cases reviewed by The Times, employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases, were simply transferred to other group homes run by the state.

And, despite a state law requiring that incidents in which a crime may have been committed be reported to law enforcement, such referrals are rare: State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than 5 percent were referred to law enforcement. The hundreds of files examined by The Times contained shocking examples of abuse of residents with conditions like Down syndrome,autism and cerebral palsy.

 Americans are always trying to be a beacon of enlightenment in the world.  We try to proclaim that our standards and morals are worth following.  We support regime changes in lands where dictators abuse the rights of humans.  We send our war machine to topple governments that allow their citizens to be tortured.  What is different about the state of affairs in the Office for People with Developmental Disabilities?  Their website banner proudly proclaims "Putting People First".  That can't be right with statistics like this:

State records show that of some 13,000 allegations of abuse in 2009 within state-operated and licensed homes, fewer than 5 percent were referred to law enforcement. The hundreds of files examined by The Times contained shocking examples of abuse of residents with conditions like Down syndrome,autism and cerebral palsy.

Why is the UN not discussing sanctions against the US for the repeated lack of protection for people that need the government to protect them, care for them, advocate for them, support them?  It is time that we start holding our elected officials responsible for their lack of leadership.  They've been elected to ensure that the laws of the land are followed, that public services are rendered, and to protect a section of the population that can't speak for themselves.  Why is Governor Cuomo not standing tall before the New York State Legislature defending his impeachment?  As the elected leader of the Empire State, isn't he ultimately responsible for the actions of his government?  An extra-marital affair is apparently enough to have a US President impeached.  Why is the rape of someone with Downs Syndrome, or the physical assault of someone with cerebral palsy, or any of the other 13,000 allegations from 2009 that went un-investigated not enough to warrant at least a public hearing?

Families of people like me, the ones that need constant care and love, have a life long struggle ahead of them.  Normal no longer exists.  We can't just go out to a movie, or the pool, or a restaurant without planning and preparation.  Where will I sit, what will I eat, will my wheelchair fit, will my "special noises" disrupt the other patrons?  Those are just a very few of the considerations that my Mom and Dad have to consider every time we leave the house.  That is why my Mom, who has a Master's Degree, has made the sacrifice to be a stay at home Mom.  She could go out and work and earn a very nice income.  We could live in a big home and have all the new gadgets, but who would watch over me?  My Dad couldn't do it, because he made a sacrifice too.  He joined the US Army so that I could have the best health care and our family could have a stable income and good family support.  But being a Soldier means working 10-12 hour days.  Sometimes it means going to another country to fight a war.  Thankfully, the Army hasn't asked my Dad to make that sacrifice yet.  His commanders kept him home, close to me, so that he could help with my needs.  Families like ours must make sacrifices that are different from the kind of sacrifices that "normal" families make.  We have to constantly balance between doing everything we can at home or sending off our special loved ones to institutional care.  It's similar to the phase that comes at the end of our life.  When our parents flip roles with us.  We must become their caretakers.  My Mom and Dad are the ones that make sure I'm loved and that I don't sit in a dirty diaper for five hours.  They are the ones that speak for me because I can't speak for myself.  They don't do it alone either.  My sisters, grandparents, and my extended family all help me everyday.  That's not the only help I receive though.

The State of Georgia also helps, by providing programs like the Medicaid Waiver Program.  This program is designed to help families keep loved ones in the home.  I get money from the state to help pay an in-home aid that helps my Mom.  This person does therapy with me, feeds me, but is under the supervision of the person that loves me most; my Mom.  America needs more programs that support parents of children that are special.  Its cost less to keep a person with developmental disabilities in their home than it does to institutionalize them.  Why not educate and support parents before they get to the end of their rope.  Most parents don't want to send their child off to a group home, but they run out of options.  Everyone needs some level of self-care.  We all need a break, a vacation.  If more states offered programs like this and truly lived by their mission statements then the maltreatment of America's most needy citizens could be reduced.

America has come a long way from the days of the Willowbrook State School but we still have a long way to go if New York is still allowing abusers to move from one group home to another without any real consequences.

Caution: This video is not easy to watch and shows the neglect of children.

Please contact your elected officials and advocate for your special loved ones.

Source: At State-Run Homes, Abuse and Impunity (http://www.nytimes.com/2011/03/13/nyregion/13homes.html?pagewanted=1&_r=1&hp) by Danny Hakim

I've not been an expirement, but I've tested the limits of available medical research and technology in the Journey to discover my special development.  My family has been patient and loving with me.  My parents have made great sacrifices for my good.  My grandparents are always there to lend a helping hand.  My sisters are there to fetch me toys or protect me from "typical" kids on the playground.  My mom works around the clock to ensure that I have everything I need.  She's up late at ngiht when I can't sleep and she's up early the next morning to comfort me after a seizure.  My dad fights for every right of mine.  If the school system tries to short change me, my dad is there with his knowledge of laws and rules that ensure children like me get a free and appropriate education.  If a business isn't wheelchair accesible, my dad is talking with the owner and educating that person about ADA laws.  My dad is awake at 04:45 updating my blog right now after trying to get me to sleep in my hospital bed.  It only took me 6 hours tonight, but I finally fell asleep at 03:30.  He's been up since 07:00 that day before.

This hospital stay has been no different from the nearly 20 before it.  I've demonstrated my seizures for the doctors to evaluate.  I've laid or sat in a bed for nearly 72 hours.  I've had my dad and Gammy here to feed me, change me, play with me, tickle me, help me.  I'm tired of coming to the hospital, and I know my family is tired of being here as well.  I'll probably never be cured or normal and everyone in my family is OK with that.  They are going to love me, care for me, support me, and fight for me forever.  I just wish that I could give them some normal kid challenges every now and then.