Dallas World Aquarium & The Sixth Floor Museum

The AIPAC Team coordinated a fantastic handicapped accessible van service for us during our visit.  We had two really nice drivers, Benny and Alan.  They both were so nice, always waiting and never leaving us at any place they took us.  We couldn't have asked for a better service to help us get around Dallas.   Alan loaded up Noah in the van and off we went to visit the Dallas World Aquarium.   I expected it to be a lot like the Denver Aquarium, but it's so much nicer.  Three stories, and so much to see.  We started at the top level and worked our way down.... twice because Noah demanded two tours.   Maybe he just wanted to make sure we got our money's worth, or maybe he thought it was the best aquarium he's ever seen.

We seen our very first sloth.  That was super neat, and he wasn't in a cage, just out in the open doing his sloth thing.  And gosh he was so cute.   Noah's favorite seemed to be these overly hungry saffon toucanets who wanted to snack on endless blueberries.  Luke was just happy to see reptiles and flamingos.   Noah also really enjoyed the third story waterfall.  It was certainly pretty.

Noah listening to the Waterfall

The Sloth

Hungry Birds

There was a point when I thought I was headed to an outdoor area where the penguins were and went through a door that had a exit sign.   Noah was fabulous about screaming to tell me I was going the wrong way.  I can always count on him to be so helpful in assisting me to navigate his wheelchair.  For a little boy who is non-verbal he can read, no doubt about that.   So I flipped around and went in the right direction, pleasing Noah that I listened to his loud warning. 

There were some areas of the aquarium that I had wished were more handicapped accessible.  Many areas had stairs that Noah had no hope of getting to.   And I will always wish for a fully inclusive world for him.   But for all the parts we could get to, he had the very best time.

We still had a few hours before dinner so we had hoped to visit Neiman Marcus.  We drove by it only to realize it was closed on Sundays.  Likely a good thing as I'm sure it would have only tempted me to purchase something that we didn't have money for, but nonetheless we got out of the van just to take a picture to say we had been there.

Neiman Marcus Sign

With Neiman Marcus a no-go, we headed to The Sixth Floor Museum, which chronicles the assassination of President John F. Kennedy.  It was rather eerie to see painted X's in the road indicating the exact shots that were fired, including the fatal shot.  The sixth floor window with a box to mark the sniper's location.   It was an audio tour, and when we obtained tickets were told that there were no cell phones permitted and asked to turn our phones off. 

One of 3 X's marking the shots fired in the assassination of JFK

However, no one gave me instructions not to take pictures, so I was clicking away with a traditional camera when a security guard approached me and sternly asked me "what I thought I was doing."  I answered him "just taking pictures."  That was clearly the wrong answer.  As he stared me down and looked at me like I had just committed the biggest offense I possibly could.   I thought for sure he'd confiscate my camera, but my sincere apology seemed to keep him at bay.  He did continue to stalk me throughout the museum, I kept trying to smile in his direction to see if we could be friends, but he was having none of it.   He followed me to the seventh floor where he reminded me that the seventh floor was the only floor you could take pictures on.  

JFK Picture on the 7th Floor

Jacqueline Lee "Jackie" Kennedy Onassis Picture on 7th Floor

All of that could have been avoided had the ticket counter told me no cameras in addition to asking me to shut my cell phone off.   I took pictures of almost everything on the sixth floor, but out of respect that I unknowingly did wrong, I'm only posting pictures from the seventh floor that are allowed to be photographed.

We did somehow leave a footprint behind... a minion figurine is somewhere in The Sixth Floor Museum, compliments of little Luke who fell asleep and dropped it out of his hands.   A distraught Luke pleaded for us to go back in and find him, but I just really didn't want to face that security guard again, and tell him not only did I take pictures but I'm littering the museum with minions as well.  Upon arrival home we repurchased the "lost" minion, and we told Luke that he just caught a different plane home.

It was nice to do some tourist things while in Dallas, the boys had a lot of fun, and it gave us a sense that we were on a mini vacation.   We had one last event to attend before we headed home - The Winspear Opera House AIPAC Dinner...

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

AIPAC Conference, Dallas 2014: The Speech

We arrived in the early morning hours at the Majestic Theatre.  We were greeted by a team of ushers in classic themed attire, with jazz music filling the entry way.  One of the ushers wanting to take a picture with Noah, which was so sweet.   The AIPAC Team had reserved seating for us in the front of the theatre.   Noah was so excited to be there.  We had a hard time keeping him quiet as he wanted to giggle and chatter.  The AIPAC Team had a really beautiful way of making you feel special.  I caught myself so many times thinking I wasn't at all deserving of such attention - I'm no one special... just Noah's mom.

Noah and a really nice Usher

There were so many amazingly well done presentations and I learned so much.  Noah enjoying all the applause in-between presenters.  It fueled his loud laughter.  Midway through I the program, I was sent down for hair and make-up.  A rather fun experience.  As a special needs parent the word pampered is not in our vocabulary.  So as odd as it may sound hair and make-up felt like a luxury.   A quick splash of make-up and a little up-do and out the door and up the stairs I went to join Debby Elnatan on stage. 

It was so great to see Debby again.  You cross paths with people on this journey and you always hope that you will get to see everyone again someday.  Hugging her felt comforting and reassuring.   Although the lights were bright, I stood there before a room full of shadows, reciting words etched in my heart.   At times trying my best to hold back my own emotion as each word took on a life of it's own.

Everyone's heartfelt applause was so deeply touching.  It has always been my hope to transform my pain into something positive and beautiful for others to experience and understand.   And I think I achieved exactly that.  Debby and I exited the stage together, just two moms dedicated to making a difference in the lives of children like ours. 

We made our way back to the hotel for a lunch in their ballroom for all of the AIPAC members and guest speakers.   It was Texas themed bar-b-que buffet, again with live music that Noah enjoyed.   So many wonderful people approached me thanking me for my speech and telling me what it meant to them.   That was the greatest gift of all, feeling like I made a difference.

Picture after speaking at the Ballroom Lunch

Everything is BIG in Texas!  Even lunch!

After lunch we assumed Noah would be ready for some down time in the hotel room, but as soon as we arrived he started to pitch a fit, which meant only one thing - he wanted to be out in the world exploring.  So off we went in search of afternoon Dallas adventures...

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

AIPAC Conference, Dallas 2014: The Rehearsal

Saturday morning, we had likely the best breakfast we've had in years as a family.  Room service had a distinct way of making you feel like someone appointed you princess for a day.  A little daisy floating in pink water on a table... tablecloths, food garnished with delicate touches.   I've never experienced such a fine dinning experience from room service in my entire life.   It was so comfortable for Noah, as he had his leisurely breakfast in front of a cartoon, giggling with delight.

Speech Rehearsals were scheduled early afternoon for those speaking.   I decided to attend rehearsals alone so the boys could do lunch and relax.  I headed to the Majestic Theatre in Dallas to practice the speech I'd be delivering the very next day.  Immediately as you walked through the doors you could feel the Theatre seeping with rich history.  Gorgeous detailed paneled walls and staircases that itched for you to explore where they'd lead.  The kind of place where if you listened long and hard enough the walls might divulge secrets. 

The Majestic Theatre was built in 1921 and once hosted a variety of acts including, Houdini, Mae West and Bob Hope. The idea that I was about to be on the same stage as legendary greats made my palms quiver and my heart flutter.    The backstage production was so elaborate and well planned.  Sound, lighting, curtains... and everything that comes with lights, camera, action!  It was my first inclination of just how big of a production the AIPAC Team was conducting.  It was breathtaking.  As I was hooked up to a mic, and headed out to face those stage lights and all those empty seats, I felt so incredibly honored that anyone would find my voice... my words important enough to hear.   Hearing my voice echo, words that I never thought I'd speak... words I expected would forever remain simply written in a collection of Noah's blog posts, felt powerful and emotional as I re-lived those words - those moments in time.

Majestic Theatre Staircase

The Walls at Majestic Theatre

Majestic Theatre Chandelier

Backstage

We ran through a quick rehearsal, and we were back off to the hotel for some down time.   We decided that the weather had warmed up just enough for us to tour the streets of Dallas.  We walked to a fountain that Luke could see from our hotel window that he was so excited about.  He called it a waterfall and we knew Noah would also enjoy seeing it up close.  After we inspected the fountain we walked around the corner to Nasher Sculpture Center, which just happened to be having a free admission day.   Noah had the best time.  I love looking at the wonder in his eyes.  His silent understanding and curiosity of new things in the world he's never yet seen before.   In fact, we were ready to head back to the hotel when Noah protested and demanded to take one more tour around.  He certainly is a little boy who knows what he wants.

Fountain across the street from Fairmont Hotel

Noah in awe of a sculpture he was admiring

We made it back to the hotel to get ready for a dinner scheduled at the Dallas Museum of Art.   A sea of tables, bar stations, and live music welcomed you as you entered.   Cocktails and those touring to look at the museum while attendees waited on dinner.  Every single person that I spoke to incredibly warm and loving.  It gave you the feeling like you were amongst family.  This giant family embracing you with love and acceptance, although knowing very little about  us or our special needs journey.  I joked I wanted to pack everyone I came in contact with in my suitcase and take them home with me.  I don't think I've felt that much unconditional love and acceptance in one place since Noah's birth.  AIPAC's members are an incredible group of people.  

One of the dinner areas at the Museum

I had the pleasure of meeting some new friends.  We immediately connected with a beautiful lady by the name of Sharon.  She took us under her wing for the evening introducing us to so many wonderful people.  Her husband Bob, equally talented and well accomplished, engaging in conversation with us that evening.   We couldn't have been in better company.  Dinner was a large buffet assortment.   Each buffet station having something different.  People mingled about giving each other hugs, sharing stories, and offering each other congratulations for good news... a wedding... a new birth of a grandchild.   People who genuinely cared about each other.   My soul soaked up that feeling.  Not knowing the next time I'd feel such a room filled of love. 

Sharon, Myself and Chris at the Dallas Museum of Art Dinner

It was the perfect ending to our first full day in Dallas. 

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

AIPAC Conference, Dallas 2014: The Invite

A really beautiful invitation was extended for our family to attend the AIPAC Conference in Dallas to speak about our experience with Noah and the Upsee.  I'm always a bit apprehensive about disclosing what all is involved with traveling with Noah, from needing items like blenders for his food, refrigerator for his supplies.... railing for hotel beds.   You rather expect people to drop their jaws and say you're a bit more baggage than we really want to take on for a special needs speaking guest.   I always worry that we'll be perceived as high maintenance when in reality we're so humble and grateful for the smallest of blessings in our life.

Noah excited to be at the Fairmont Hotel

But the AIPAC team, didn't even flinch when I told them about Noah's travel needs.  They remained excited for us to join them, and were so dedicated and committed to making our little Noah comfortable and happy. 

You might be scratching your heads and thinking what exactly is AIPAC.  For those of you unfamiliar with the organization, their mission is to: "strengthen, protect and promote the U.S.-Israel relationship in ways that enhance the security of Israel and the United States."   Now you might now be thinking what on earth does a special needs parent like myself have to do with AIPAC.  It's simple really.  The Upsee was designed by an Israeli Inventor, Debby Elnatan, and it's helping children all across the US, like Noah.  

We were so honored that they wanted to include us at their conference and have me as one of their guest speakers.  I enjoy so much bringing awareness to what our life is like with a child who has special needs and discussing life-changing aspects like the Upsee. 

Although we had traveled earlier in the year internationally with Noah, I can say that our airport experiences were night and day from the last time.  Certainly not the easy, friendly, helpful experience we had the first time.  I did all the same things, contacted TSA cares, made them aware of Noah's situation, needs, and what he'd be traveling with.  I even received a confirmation email outlining the conversation I had with TSA cares.

We flew American Airlines this time.  Even though we were told that there would be no baggage charge since we were traveling with a special needs child, we were still assessed $25 per bag regardless of weight or contents.   There were no charges associated with British Airlines.  We also had a TSA/personal airport assistant last time.  This time we were on our own.  No attendant - really no one to even tell us where we needed to go.  Thank goodness this time we had an extra set of hands, as Noah's grandmother traveled with us as Noah's extra care provider.  

Last time we were ushered ahead of lines to have Noah's wheelchair examined and checked.  This time we waited in long lines, and no one really even knew what to do with his wheelchair.   I even had to remind them to check the car seats we were traveling with. TSA was unorganized and fumbling all over the place.   None of Noah's foods or formulas were checked as liquids, just passed on through. 

Noah really enjoyed his flight to Dallas, he enjoys flying - who would have ever guessed, as parents who were convinced that we could never leave home any more than a few miles in any direction that we had a special needs child who would be able to get to a point in his life where he enjoyed traveling.   Dallas/Fort Worth Airport was a bit crazy.  You couldn't ask anyone for directions as each person would tell you something different.   The highlight of the airport in Dallas was a gentleman in a wheelchair who stopped us because he wanted to know more about Noah and if he had CP.   He struggled a bit with his speech but I understood him perfectly.  He wanted to know if Noah could talk and how he was doing.  He was such a nice young man, I instantly imagined my Noah like him if I fast forwarded twenty-years, at an airport trying to chat with others like him.   I explained Noah couldn't speak yet, he said "it was a lot of hard work but he'll get there." 

I know I've written about this before, but I know God places people in your path and along your journey for a reason.  And I always listen when he sends me people to deliver those messages.  In hindsight I wish I would have stayed longer with him, he was all alone having his airport attendant just abandoning him at a transportation stop.   But I was worried about Noah's lack of lunch and I felt desperate to find a way to our shuttle ride.

We wound up getting on a bus because some driver convinced us he could take us to the Super Shuttle pick-up, we loaded up 5 pieces of luggage, 2 car seats, 2 backpacks, and a wheelchair and then abandoning our $5 cart, only for him to take us two terminals ahead!  All that work for a 30 second ride.  I kid you not. Why you ask?  Because he was in need of a tip! 

We arrived at our Super Shuttle destination only to have every shuttle come and go tell us they either weren't going our direction, or didn't have a handicapped accessible van at the moment, even though we had prior accessible reservations and payment had been made coordinating our ride to the hotel.   After calling the company, we kept being told, 20 more minutes, 30 more minutes, 10 more minutes.... until someone finally fessed up after 2 hours stranded at the airport indicating they didn't have a handicapped accessible van AT ALL.... and they were trying to arrange 2 different cars to get us to the hotel.   We finally decided that Noah couldn't wait any longer so we made the decision to break down the wheelchair with the hopes it would fit in any available van headed downtown with all our other luggage and load him into the van in a car seat.

With Dallas traffic, 3 hours after landing, we made it to the hotel.   I seriously can't ever recommend Super Shuttle if you are traveling in Texas, it's great out here for us to get to DIA, but they need to work on assisting the ADA community in Dallas that's for sure.

But instantly upon arriving at the hotel we were immediately greeted with the best love and customer service you could ever imagine.  The Fairmont hotel has fantastic staff that were so warm and welcoming.  We were in awe of all the help.  We made our way to our room accompanied by two very nice gentleman assisting us with our luggage.  Our hotel rooms were simply perfect.  And I say that because sometimes you always wonder how we'll get Noah around in a wheelchair in rooms, but it had a wonderful living room area, and on each side of the living room bedroom areas.  Plenty of space for Noah's wheelchair to navigate.  The hotel itself is beautiful and the rooms equally so.

Hotel Living Room Area

Noah's Bed with Rails and Pillows

Blender and Refrigerator for Noah

We traveled on Halloween, but packed both costumes for the boys so they could dress up in the hotel room.  Their Halloween costumes provided by a loving foundation called Ween Dream.  Luke was Yoda, Noah a Disney Planes Pilot.  We assumed there wouldn't be any trick-or-treating in the hotel, but were greeted with a wonderful gift basket of Halloween goodies compliments of the AIPAC team.  Along with another large gift basket for the family.  

Noah & Luke's Halloween Gift Basket

Gift Basket from the AIPAC Team

Luke trying to put Noah's Planes Costume On

 

 

Noah's Costume as Plane's Pit Crew

It was such a special thing for them to do.   Noah also had a blender and mini fridge, and it felt like home away from home.   The AIPAC team had thought of everything and gave us such kindness and love.  We settled in and ordered room service, feeling so blessed and excited for our weekend experiences to come.

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Unexpected Blessings

I had all but given up hope that I'd be able to restore anything as a result of our computer hacking.  Trying to come to grips that I had exhausted all avenues I knew to pursue.  Did all the things everyone said to try, the FCC, the FBI, filing an IC3 report, contacting local law enforcement, the DA's office, and having the case turned over to a local detective.   All seemed futile.  With all agencies really reiterating the same thing... this happens on a regular basis.  I am just one of thousands that this happens to daily, and there is little to no recourse when it does occur as tracking down hacking criminals is what I gather almost next to impossible. 

And just when I had said you're going to have to decide what to do - to move forward, or to quietly retreat in the midst of what had happened and call it quits... a special needs parent in the community, as if sent down in the form of a miracle, had a connection that restored some of what was taken.  Our Facebook profile was returned, Noah's page and the Special Needs pages and groups all there.  The only catch being that the hackers changed the URL address, causing me to be stuck with their new label.   A problem for those who will search out my assistance not knowing that URL is now different.  Facebook has a policy you can only change a URL once - and the hackers decided to take that one time opportunity.   I'm trying to view the loss of of the URL address as a minor casualty considering that those 80,000 families are now safe and back in the hands of someone who cares and wants to assist them all. 

I'll have to be more cautious in the future, and do things differently.  I've learned that most fundraising sites that are tied directly into simply having a Facebook login could be dangerous if money is not transferred out on a regular basis. It should never stay there to accumulate to your goal. 

I always try to look for the silver lining in the midst of life's big challenges, and during this hacking have connected with so many other special needs families that have had this happen.  Some suffering the same fate that I did, while others have had their children's likeness stolen and new Facebook pages created intended for hurt speech, poking fun at children with special needs, and even creating fake donation sites for children that are not theirs.   Some parents have been fortunate enough to have their pages restored, while others have lost all hope of ever grabbing Facebook's attention to rectify the matter, some even having to turn to news media outlets to have pages shut down and restored.   I have also had the pleasure of connecting with other administrators and directors of other special needs organizations who have graciously even offered me the opportunity to assist them and join forces in our mutual endeavors to assist the special needs community.  People I likely wouldn't have met otherwise.

I still wish it had never happened, and as unrealistic as it likely is, I still hope for justice for those who have suffered the same type of internet crime.  I'm just glad to be back in some capacity to help the special needs community that means so much to me. 

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Down and Out

You should never ever think that God won't give you more than you can handle.  Because He will and He does.   In the middle of trying to figure out Noah's mystery spots that kept periodically appearing on his skin every few days and finally receiving the diagnosis that his spots were related to his body battling an ear infection - to getting  hacked on the internet the very same day.  It's like -  please just enough already.

On Noah's daddy's birthday no less, our Facebook account was hacked and taken over.  With it we lost control of Noah's update page, and a Special Needs Community page that serviced 80,000 Special Needs Families.   Years of work and assistance gone in a matter of minutes.  Now the page lays in the hands of criminals leading families on with obscene and inappropriate content mixed with special needs related posts to confuse followers into not really understanding that the page has been completely taken over.

We've spent over a week pursuing all avenues to rectify the situation.  Facebook makes it virtually impossible to contact them for assistance, especially when someone changes your URL's on everything, and erases you from any knowledge from Facebook that you ever existed in the first place.  Since this also involved Noah, we've contacted the FCC, the FBI, and filed an IC3 Internet crime report, we've spoken to the District Attorney and most recently had three officers in our living room as we made a report and explained all that had been compromised as a result.

And I sit here with a completely helpless feeling.  Helpless to reclaim what was stolen. 

I poured some of my best positive energy into assisting other families for the last four years of my life.  I did it anonymously, often acting as a "Dear Abby" for special needs families.  Someone they would write to in order to vent, to ask for help, to seek guidance, or support.   On my most difficult days it served as an outlet when all else seemed futile.  There are so many things about my own life with a special needs child that are out of my control, and in recognizing that I was often times powerless in my own situation I always had the power to make some else's day better... to inspire, to give hope, to offer words of encouragement, and to remind others they were not alone.

And it's gone.  And I feel incredibly sorry for all of those families who depended upon me.  Who needed me in their day.  The idea of rebuilding feels like the impossible mission.   And when you have been violated in this way, you really feel like swearing off the internet entirely.  I want to believe there is a way to reverse it, to reclaim what was mine,  but the longer this goes on, the further away it feels from being possible.   It was a safe place for the special needs community that was built from so much love.

And I'm kicking myself that I allowed myself to be so vulnerable to have something so important taken from my control.   And right now I'm rather in limbo, I can't move forward as the page continues to be controlled by hackers, and I haven't heard back from any law enforcement agency.  When you file these online reports they warn you that you may not ever hear back as they receive over 1,000 reports a day.  Not very comforting, leaves people like me really in the lurch when something like this happens. 

I do however miss that aspect of helping others more than I realized I would.  It gave me a place to channel my pain into something beautiful.   I have great concerns for all the special needs followers as they are now subject to questionable intentions by this hacking.  Their information could also be compromised, their children's information and likeness even hunted online.  So innocent, so vulnerable and they likely don't even know it.

I'm also very concerned what this means for Noah, and his information floating out there in the hands of hackers.  We don't quite have true knowledge of what all they do or don't have access to as a result of what has occurred.   Certainly something I didn't see coming.  But that is usually how life works - blindsided when you least expect it.  I want to believe in Karma, I want to believe that there is justice somewhere for the injustices that run rampant. 

"Have we entered an era where our lives can be destroyed by a pack of wolves hacking at their keyboards?" Mark Coffey

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

A Boy and His Dragon

Noah's dragon harness arrived this week.  It's manufactured by Leckey and is a part of the Leeway line.  I love how Leckey surprises me.  I'll get something and think whoa hold your horses what were you thinking?  This is complex and not going to work out - but in the end I'm pushing the panic button too fast and it turns out to be awesome!  

First I have to admit giving me hardware and require me to use tools and I'll be slightly intimidated.  Thank goodness for Noah's daddy who adores tools and knew exactly the tool we needed to attach it.  So that eased that concern.  But I was worried about how it latched with the clips hidden in the inside of the harness.  Kind of smart, but I was worried it would be a challenge to clip it on and off.  But that too proved to be of little concern.

I also was unsure of the back straps.  You adjust the straps with a pressure clip in the back.  Which reminded me of one of Noah's Fisher Price highchair models that he had as a baby.   It mounts differently than his current harness, so we are able to still use both, should one be in the laundry we can still use the other one.  And I really liked that option.  The harness is incredibly supportive and made really well.  It comes up great around the neck and trunk.  Fabulous support.

When we made the decision to pursue this harness for Noah I didn't really consider how adorable it was.  As a special needs parent, I am so conditioned to think about something being practical and needed before I even think is it cute?  Cute always takes a backseat.   This is the first piece of equipment that feels fun... that feels child-like.  That says I'm a cute little boy with a dragon that happens to sit in a big-boy special chair... not the handicapped child in boring, non-happy chair. 

Leckey is distributing this product through Ottobock in the USA. You can contact your local Ottobock representative or DME provider for more information on how to order.

I love this new direction and trend of going in a fun, playful direction with special needs equipment.  It adds personality and character.  I didn't realize how much I enjoy having something cute for Noah.   I was so conditioned to this is all there is... black, silver, greys... boring.  But hey it's functional doesn't matter if it's not cute.  But I'm finding the cute factor matters too.  Reminded me that my Noah is a little boy first and his disability comes second.  And I hope others see him that way too, the little boy and his dragon...

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.