Run for the Wishes 5K

Yesterday was my chance to give back.  I've been so blessed with many special opportunities and you have to be willing to refill the karma by sharing and doing for others.  That's what my family and I did yesterday.

We participated in the first Run for the Wishes 5k to support the Columbus, GA chapter of the Make-A-Wish Foundation.  We ran together as a family, but my 5 year old sister was the star.  She ran the entire 3.1 miles and won 1st Place in the 14 and Under age division.  I was very proud of her.  She runs because she knows I can't...that and she's good at it.  Thanks Sissy for setting a great example and doing the Snipes Family proud!

 

After a busy morning at the race.  Me and the family got to see Disney on Ice at the Columbus Civic Center.  It was great. 

I also got to see Gammy and Pop Dale who in town visiting.  They are going to be taking MaryElizabeth and Lucy to have "big girl" time in the mountains.  They'll be back next weekend and spend all weekend with me!!!

Magic Legs

After a very long wait, I finally got my TAOS1 orthotic and walker.  This thing is an amazing tool that will help me achieve my goal of walking independently.

The TAOS (Therapeutic Ambulatory Orthotic System) is a combination of an Orthosis and a mobility base. These two components work together to provide your special needs child the ability to flourish in an upright hands free environment. The orthosis ensures your child's legs and torso are kept in proper alignment so his muscles can be trained to work in the manner in which they were intended. The mobility base supports your child in a standing position, enabling him to safely explore his environment to the best of his abilities. Many special needs children are able to take steps independently for the first time when utilizing the assistance provided by the TAOS. Since we first started fitting TAOS units in 2006, we have been amazed at the benefit it provides to a very wide range of children and abilities. The upright activity and exercise children get while in the TAOS is a tremendous benefit to their health and well being.

Unlike a traditional pediatric walker, stander or gait trainer, the TAOS ensures that your child is in proper alignment while bearing weight. This is important, as prolonged weight bearing in poor alignment can lead to damage to joints because of unnatural loading.

The other cool thing is that I got play teacher again.  There a lot of physical therapist and other helping professionals there that learning about this new system for special children and I was there example!  Maybe I'll be a teacher when I grow up.

Congratulations Mom...26.2!

I am proud to say that my Mom completed her first marathon this past weekend.  She ran the Albany Marathon in Albany, GA and despite all the severe weather, she did great!  She had to run through torrential rains, lighting, wind, and even a torndado warning.  She came in at 4:30:59 which is the fastest marathon in the Snipes family. Dad ran a 4:50 in Memphis, but he was pushing me.

My Sisters and I were able to cheer for her from mile 17 to the finish thanks to Grandmom who drove us to Albnay the morning of the race.  Dad also did a good job supporting her.

Our next running event will be the Run for Wishes 5K in Columbus.  We'll run that as a family as we raise money for the local Make-A-Wish Foundation chapter.  If you're in Columbus, you should come down and run with us. You can register at Big Dog Running Co in Uptown Columbus, or online at www.bigdogrunning.com.

I hope to see there!

See if you can count how many times I blink

Well, I guess it's good that I'm headed to the neurologist tomorrow.  I've been having a lot more seizure activity since coming home from Rome.  I had a pretty significant episode this afternoon while my family and I were out walking.  Here's the video that Dad recorded.

I was already about 20 seconds into the seizure by the time Dad got his phone out and started recording.  It was about 2:40 long and was different from my usual myoclonic seizure.  I'll make sure that Dr. Kim sees the video and let you all know what she thinks is going on.  If I had to bet, she'll do a medication change and may even want me to have a stay in the epilepsy monitoring unit soon.

Time for a Checkup

It seems that being a world traveler has taken its toll on me.  I've been fighting a cold since I've returned from Rome.  My Mom spoke with my neurologist today because I've been having some tremors and shakes and my balance just doesn't seem right.  My wonderful doctor, Dr. Kim, has always taken great care of me and made me an appointment for me next week.  That means Dad and I will be taking a road trip to Birmingham, AL on Monday. It's just a clinic visit, but I'll let you all know if anything major happens.

On a more positive note, my interview with Joan Lewis is now available for listening.  Joan Lewis is EWTN's Rome Bureau Chief and does a weekly podcast.  Her interview with me begins at the 13:30 mark of her hour long podcast.  You can listen for free on iTunes.  You'll want to look for the EWTN: Vatican Insider 2-25-2012.  It should be number 11 on the list.

Finally, I'm excited to announce my next run.  Well, I won't be running, but my Dad will and he'll be pushing me. The local Make-A-Wish Chapter has announced the innaguaral Run for Wishes 5K on April 28, 2012.  The event is being hosted by Big Dog Running Co in Uptown Columbus so you know it will be a first class event.  My whole family will be there running.  Mom, who is running her first marathon this weekend, will push my 1 and 3 year old sisters in the double jog stroller while my 5 year old sister runs along side (this will be her second 5K).  Dad will be pushing me in my big "jog stroller".  Everyone in the Columbus area should come out and support this great event and help raise some money so that more special children can experience a Wish.  After you get done reading my blog, you need to check out their Facebook page and "Like" them.

I Sit and Talk with EWTN's Rome Bureau Chief

Ms. Joan Lewis, the Vatican Insider, has posted a story about my visit with the Holy Father on her blog, Joan's Rome.

If you remember, I posted a blog entry about how Mom, Dad and I met her during our visit to Rome and how she interviewed us for her radio show.  I hope you'll take the time to read it.  The radio show should be up tomorrow morning.  I'll have Dad post a link when it's available.

"Though I had known of this trip through an email exchange with Xavier’s grandmother, Micki Kaye, the Snipes and I first met at the offices of L’Osservatore Romano where they had gone to pick up the photos of their meeting with the Holy Father. Grandma Micki was not in Rome for the visit as she stayed in the States with Xavier’s three younger sisters.

Amber, Christopher and Xavier came to my home the day after the papal audience to share their story and their journey with me, and we later went to lunch." - Joan Lewis

Joan was a very nice lady and she made my Rome trip even better.  My family felt like we had a personal friend in Rome which is a good thing when you're over 5,000 miles from home!  I've decided she can be Roman Grandma!

Thanks, Ms. Joan.  We can't wait to visit you again next time we're in the Eternal City.

Back to America

Traveling to Rome has been one of the greatest experiences in my life. Since returning home, I've sort of felt like a celebrity. Everyone wants to hear about my trip to meet the Holy Father since I am, after all, a second class relic having been kissed on the head by Pope Benedict XVI. Rome was an amazing place. The history and architecture was, at times, almost overwhelming. It was very hard to take in the beauty of nearly 500 Catholic Churches. Of course, I didn't see them all, but it was impossible not to see something amazing everywhere you looked. We walked down ancient alleys past churches that were older than America. Some of the churches, like the Pantheon, Me and Dad in front of the Panteon.were commissioned prior to the year of our Lord and weren't even churches when they were first built.

We met amazing people. There were several instances where we met Bishops and Cardinals just walking down the street. In America, meeting a Bishop or even Cardinal is an extraordinary event, but in Rome they are part of the scenery and they're approachable. We met several after my audience with the Holy Father. Most of them approached me, after recognizing me from my appearance with "Papa". Meeting people in Rome was easy. Dad was nervous about how the Romans would react to me. I'm not always quiet, but the Romans seemed to really like me. We'd be walking through ancient piazzas and people would come over and touch me, or say how beautiful I was, or offer prayers and blessings for me. That doesn't happen very often in America. My parents were amazed and relieved by how well the Romans accepted me and my special needs. It's an old city so not everything is wheel chair accessible but Dad managed to navigate my wheelchair up and down the cobbled streets that once carried the chariots of the Ceasars. Most of the churches had many marble steps that lead to the entrances. On more than one occasion, priests, police, or just random strangers came running over the help my Dad carry my wheelchair up or down the steps. We even met and were interviewed by EWTN's Rome Bureau Chief Joan Lewis. She interviewed Mom and Dad for her radio show Vatican Insider with Joan Lewis which should be released on 24 February 2012.

We ate amazing food. Meals in Italy are an event. The Romans drive and walk like they don't have a second to spare, but they seem to have all the time in the world when it comes to enjoying their meals. We ate food that Mom and Dad couldn't even pronounce and it was all delicious.

The one thing that this trip has helped my family learn is that I have many challenges. It is those challenges, though, that allow me and my family to experience these extraordinary events. It is special trips like this Rome trip, that was provided for and arranged entirely by the Make-A-Wish Foundation, help us remember that despite my challenges, I bring a ton of joy to the people around me. I'm thankful for that and I wouldn't trade any of it to be a "normal" boy because "normal" boys don't get a kiss from the Holy Father.Pope Benedict XVI and I have a "moment" together.

My Make-A-Wish "wish" has been Granted!!!

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!

Il mio secondo giorno a Roma

My second day in Rome.  This city has so much to see.  It's hard to walk down the street without passing something historic.  My Mom, Dad and I were out this morning to sightsee.  Our plan was to walk to St. Mary Major.  On the way, we passed an amazing church that wasn't on any of the tourist maps.  Dad took some great photos at this church which was dedicated to Our Lady of Perpetual Help.  After spending some time there, we walked a few hundred meters to the grand Basilica di Santa Maria Maggiore.  It's amazing that in Rome there are some many churches in such close proximity to each other.

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!

My First Flight over the Ocean

My Rome trip got started without a hitch...almost.  I arrived at the Atlanta Airport around noon for my 4:10P fligh to Rome.  Mom and Dad wanted us there in plenty of time so that any delays at security wouldn't make us late. Everything was going great.  We made it though the TSA checkpoint with no problems.  Dad even had to bust out with some TSA policy lingo when the agent tried to take me off by myself to be screened.  Dad stopped and said, according to TSA policy, a parent won't ever be separated from their child.  After that, everything was simple.

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!