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.