Thursday, November 20, 2014

Finding a Soft Place to Fall

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We're supposed to be strong and hopeful.  Advocates, fighters and voices for our children with special needs.  We are expected to have courage as we watch our children struggle.   It is assumed we have broad shoulders and are able to let painful stares and cruel words roll off our back without a second thought.   Believed that we are brave and able to withhold concerns about our children not meeting milestones, struggling with sensory issues, or not sleeping through the night, and fearing for the future.  Strong, resilient, faithful, and focused.  Never feeling discouraged or overwhelmed with all that life throws our way.  Because we can handle anything in our path.

But the truth being; we all need a safe place to fall.

The people I have there for me I can count on one hand, and I don't even need to use all five fingers.  I mean truly be there for me if I had a crisis in the night and needed someone to call to watch my typical child while taking my child with special needs to the ER, those that I would call if I had a flat tire and was stranded, someone I could call to ask me to bring me a gallon of milk.  Someone just to listen about my heartache, my hopes and dreams for my child.  And I'm not the exception but rather the norm when you have a child with special needs.  Our support is significantly decreased, even more so depending upon the level of severity of your child's condition.

Sometimes you think someone is going to be your safe place to fall, but then you find yourself falling hard, looking up realizing the person you thought would catch you couldn't do it.  And for a moment it hurts.  It hurts because you needed someone in a really difficult moment.  Maybe that was just to say today is hard.  Or gosh, I'm so worried about my child because of x, y and z.   But they were too busy, or couldn't make time, or went about their lives not even looking to realize you had been left behind. 

For a moment you might abandon the idea of ever having a safe place to fall.  That unconditional person or group of people in your life that is there for you, whom you can say anything to without an ounce of judgment cast in your direction.  That hears you, that holds your hand, that offers you a hug even though there is nothing else they can do.  A person who genuinely cares about you and the well-being of your family and your child with special needs.  And if need be drop what they were doing to be there for you in a time of need.

That safe place to fall is critical for refueling a special needs parent, to remind them when all feels lost that they're not alone, that they don't have to carry the weight of this journey all alone.

When the world gives us harsh cold winds our true friends, like our favorite blanket, wraps us up in warmth, comfort and a soft place in which to fall. Anjie Henley


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

Tuesday, November 18, 2014

Beyond Barriers

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Just under the wire,  I sit here with a letter from the state approving a long fought for bathroom modification.   Truly a miracle in it's own right.  With less than sixty days until the end of the year, and one of the bidding contractors basically disappearing off the end of the earth and taking Noah's file with him.  Leaving us unable to submit a revised bid as the State requested.   This required his county caseworker to submit a letter explaining the nature of why we couldn't comply with their request. 

I thought immediately - game over for Noah.

There is no way we'd get a response back from Medicaid by the end of the year, and when we did they'd surely say you're up a creek because one of the bidding contractors quit their company and stole Noah's file, and even if they did say yes in the eleventh hour how can you construct a handicapped accessible bathroom by the end of the year?  

But I continued to pray and never lose hope.  And the impossible happened.  

There are still some challenges I'm facing, like Medicaid not approving the entire project, leaving me roughly a little over $2,000 short.   While his caseworker plans to ask the state to re-consider spotting Noah an additional $2,000 plus,  I'm kind of thinking that they may likely be willing to offer no more to Noah, even though he hasn't maxed his waiver funding this year.   This means right now what they have asked the chosen contractor to do is modify his bid to eliminate features Noah needs.   Painful thought for me.

I don't know what that will look like.  Maybe that means I have to forfeit a changing table and lay him on the floor, maybe that means no heat lamps because he can't regulate his own temperature well due to the nature of his brain injury.   We already are doing without creature comforts like a simple mirror over a sink so Noah can look at himself, or a height adjusted caregiver sink, no guard railing, all features denied by Medicaid in their final approval of the project.

I'd like to believe they'd step forward so I wouldn't have to cut additional features from this bathroom modification but my gut feeling is I very well could be stuck.   Makes me nervous, but like most things it's out of my control and in the hands of someone else. 

That to a large degree is the hardest part is having to rely on others for the care and help your child needs.  You are at their mercy for better or for worse.   I'm trying to celebrate the simple fact that we made it this far, but recognize I still have more hurdles to go.  And as you may have guessed this will mean construction starts during the holiday season. 

I am also bummed about a situation involving Noah's invitation to Thanksgiving dinner this year compliments of Zolo's Southwestern Grill coordinated by his county services for special needs families like ours.   You may remember we were invited and attended last year and had wonderful time.  This year we decided to go again and invite my older brother's family as they permit you to invite your family up to twelve members.  I didn't see an invite come in the mail or through email as was done last year so I contacted his caseworker who apologized I was never notified.  His caseworker sent me an email with registration on November 3rd and I registered that day.  Two days later I was notified that we were placed on a wait list with 121 people in front of us.  I was later told the event filled up on the first day of registration which was on November 1st.   When I called obviously upset that I didn't have even a fighting chance as I was never timely notified about the event, I was told they were sorry and that Noah and others had been lost in their data base.   Thereby causing Noah to miss an opportunity because of their clerical error.  

I highly doubt we'll get off the wait list, even harder as we haven't been able to get together as a family at the holidays due to Noah's sensory challenges for many years and when you become a special needs parent you feel you could very well likely win the very worst host award.   Your priorities are so focused on your child that you could easily burn the turkey into brittle bits and forget to buy a Christmas ham.   I feel especially bad having extended the invite not knowing that Noah wouldn't make the cut, due to us being untimely notified.  While I am trying to remain positive that somehow we'll find a way off that 121 person wait list, realistically I know that it is unlikely.   Coordinating Plan B at another restaurant feels like it's in my future.

I'm hurt about it, not jut because I was hoping to make this a family tradition year after year, but because Noah missed an opportunity he otherwise shouldn't have.  Had I been properly and fairly notified would I could have made sure we registered on the first day.   And it's Thanksgiving this time, but what if next time I'm not told about something else... just conveniently out of a database.  Another opportunity for Noah lost.  Opportunities that we have become dependent on as our only source of help.

Three things that never come back: the spent arrow; the spoken word; the lost opportunity. 
William George Plunkett


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

Monday, November 10, 2014

AIPAC Conference, Dallas 2014: Winspear Opera House

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Lighted Trees Outside Winspear Opera House

Our last event was the AIPAC Dinner at the Winspear Opera House.   Lighted trees lit up the Opera House grounds, reflecting beautifully on water that sat right in front.  Was a really beautiful effect at night.  Almost magical like a evening painting that twinkled when you looked at it.    Noah was excited that he was again out on the town.   He was certainly enjoying seeing and experiencing new things.

We found the first available table for dinner in a backroom.   I think we actually got kind of lucky because I think it was the only buffet station I could find that had corn dogs and sandwiches for Luke.   And this buffet and an incredible assortment of sushi and Asian cuisine.  First time I've eaten ceviche!  I was expanding my horizons.   It was nice to engage in conversation with AIPAC members that shared a table with us. 

I wandered about collecting plates of of food and drinks for my little troop and bringing it back to the table.  One of the bar tenders made a lovely comment about how amazing the group was that she was serving.   She said she has served a lot of different types of people over the years and that she was in awe of how friendly and nice everyone was.  I told her I agreed.  She asked about my connection to AIPAC and I explained I was simply an invited guest speaker discussing my child with special needs.  She began to cry.  She said she was having a really hard day, her power had been shut off, and as a result only got 2 trick or treaters on Halloween who said they'd pray for her.   She felt bad for having those feelings of struggling because she assumed I had it worse.  Little did she realize that all of us are fighting different battles, struggling in different ways.   I gave her a hug.  She was sweet bar tender.  Sometimes people are placed in our path for a reason, and sometimes we are that reason for another person.   I hope I was able to comfort her and reassure her that things will get better.  We just have to keep believing. 

We all made our way into the Opera House to watch the evening's presenters.  We had hoped to stay for the entire session but the boys were ready for bed and we missed the last half hour.   The parts that I was able to watch hit home, as a speaker said "by myself I'm an advocate, but together we are a movement."  And another speaker saying that "one person can't do it alone."
LED lighting at the Winspear Opera House - actually retracts to look like stars in the ceiling

There are times in my life where I want to think that one person can make a difference - that I can be that one person to bring about change, to fix the wrongs, to leave this world a better place for Noah and those like him before I die.   I feel sometimes there nearly isn't enough time for me to do it all... my mind wanders to changing facilities in a Space to Change Campaign giving Noah and others like him the dignity of being changed properly in public restrooms and changing facilities, I dream of a world that has handicapped accessible friendly airplanes that simply allow an individual to remain in their transit ready wheelchair with tie downs like they'd have in handicapped accessible vehicles, that I could fix all the problems with SSI and Medicaid, and Medicaid Waiver programs that promise help but then find ways of denying you that promised help - that things like the ABLE Act would help families like us that are barely financially making it by and have no resources to be able to save for our disabled child's future leaving them in the lurch of the State's care into adulthood.   There are so many things I want... that I need to change.  It feels endless.  I see so many thing that need to be fixed. 
Noah in awe of the ceiling light and the changing colors

But I can't do it alone, I know that.  Those speakers are right.   I might be able to plant a seed, but I can't make it grow without help.  The impact I may make might not be on a grand scale.  But it's certainly not for a lack of drive and passion. 

We headed home for our last evening.  Noah and Luke both a tiny bit sad because they understood packing meant that our time in Dallas was coming to an end.  Upon arriving at the airport we were told again that our luggage was too heavy.  Six pounds too heavy.  Really no heavier than when we left.  I once again explained it was Noah's supplies needed for traveling.  Once again charged $25 a bag.   American Airlines had separated us and spread our seats out on the plane.  I told the attendant that wouldn't work for us as we needed to all remain seated together to help care for Noah.  She looked at him and laughed saying "It takes all of you to care for a baby?" 

I was like really?  This is how Dallas is going to end? Being on this incredible weekend high of positive experiences and the attendant is going to call my severely disabled, 5 1/2 year old child a baby?  I wanted to correct her, but her body language was one of being in charge and exercising her power for better or for worse.  She finally agreed to seat us all together, but purposefully put us in the last row of the airplane.   We carried two car seats over more than 30 rows to the back of the plane, cradling Noah in my arms.  When we got to our seats I immediately knew we were going to have difficulties getting home.  We were seated right on the engines of the plane.  No view for Noah to see out, and the noise from the engines were going to be louder than elsewhere on the plane.  There was nothing I could do, we had to make the best of it. 

And in true Noah sensory style he threw up multiple times not being able to tell time and space and see out, with the overwhelming hum of the engines.  I was glad once we landed and were able to get him off the plane,  although being last to get off also caused him to throw up yet again.   The next time we fly I'm certainly going to have to re-evaluate seating... and there is no way we're going to be able to sit on the engines with Noah in the future.   I'm still trying to wrap my head around how we'll even travel with a service dog that is due to join the family sometime next year with as small as some of the leg room in these smaller planes are.

You would think that the plane ride home would be our only challenge of the trip, but it turns out something wet had soaked one of our pieces of luggage.  The piece that had all of the nicest clothing we likely owned and Noah's Upsee.  We assumed it was just the outside of the luggage but we didn't really know until we arrived home and opened it and a TSA inspection notice lay on top.  I'm still not sure what liquid got on it.  It certainly wasn't water as it stained our brand new luggage and created deep black oil-like stains on our clothing.  And our clothing was in plastic laundry bags before TSA fondled our possessions.  Five washes later, and I can't get it out.  Everything in that bag is really toast.   And I'm not sure what do to about Noah's Upsee - especially because I don' even know what's on it. 

I of course called American Airlines who says it's not their fault that if there was a TSA notice it becomes their fault.  TSA says doesn't matter if we went through it - it's American Airline's fault that it's wet.  So I've got two agencies pointing the finger at each other.  The claims form is truly ridiculous to fill out for TSA, and according to online research you could be fighting with TSA for six months to a year.  I have so many battles in a day from SSI to Medicaid, to denials for Noah's equipment and therapy that I'm not sure I have another fight in me right now.  And I am trying to look at it from the perspective that I gained so much on this trip that in the end I maybe I should just accept the loss and move forward.  

I must remember to count only our blessings and not our problems.

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

Friday, November 7, 2014

Dallas World Aquarium & The Sixth Floor Museum

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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...


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

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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...


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

Thursday, November 6, 2014

AIPAC Conference, Dallas 2014: The Rehearsal

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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

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. 


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

Wednesday, November 5, 2014

AIPAC Conference, Dallas 2014: The Invite

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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.


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

Tuesday, November 4, 2014

Unexpected Blessings

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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. 


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