Wednesday, January 18, 2017

That is me singing Newsies at the top of my lungs.

To be a member of this family means that you have a movie line and/or musical song to accompany any and every situation.

For example:

The night before my wedding I was singing "How do you solve a problem like Maria?" uncontrollably. I mean, it is after all what the nuns sang when Maria married Captain Von Trapp!

When it rains, we have an entire repertoire of songs we work our way through -- usually starting with "It's raining on prom night!" and ending with "If all of the raindrops were lemon drops and gum drops" with a healthy dose of Carpenters and "Singing in the Rain" thrown in!

And last week when a gentleman at indoor softball practice held up a piece of equipment and said "What does this do?" I couldn't resist saying "It makes you beautiful." (Truvy, "Steel Magnolias")

And y'all, I am not even scratching the surface here.

So keep that in mind as I tell you that we have been spending a lot of time listening to "Newsies", Little Red's soundtrack of choice for the ride to school. And every time I hear the song "Brooklyn's Here" I cry. I mean real tears, can't talk for a second cry. Even as I am swallowing deep so that I can sing along with Cate, I have been wondering why in the world the song is affecting me so strongly.

Today it hit me.

Do you know the story of "Newsies"? The young boys in New York at the turn of the century are outraged when the newspaper raises the rate for their bundle of papers to make more money. They revolt. And at first the rag tag bunch is just stirring things up and getting people hurt and thrown in jail....right up until the Newsies from all the surrounding boroughs show up in solidarity and support.

Just glance at the lyrics:

Newsies need our help today (Newsies need our help today)

Tell 'em, Brooklyn's on the way (Tell 'em, Brooklyn's on the way)
We're from (Brooklyn)
We are (newsies)
We are Brooklyn newsies
Just got word that our buddies is hurtin'
Facing total disaster for certain
That's our cue, boys, it's time to go slummin'
Hey Manhattan, the Calvary's comin'!
Have no fear (you know we've got your back from way back)
Brooklyn's here (we'll get your pay back and some payback)
We're the boys from the beaches of Brighton
Prospect Park and the navy yard pier
Strikes ain't fun, but they sure is exciting
Loud and clear - Brooklyn's here!
Borough what gave me birth
Friendliest place on earth
Pay us a visit, you'll see what we means
And when you do (when you do)
We'll kick you halfway to Queens
Now them soakers is in for a soakin'
What a sad way to end a career
They's a joke, but if they thinks we're jokin'
Loud and clear
Manhattan's here
Flushing's here
Richmond's here
Woodside's here
So's the Bronx (Bronx cheer)
Brooklyn's here
Loud and clear, we is here!

Brooklyn. Manhattan. Flushing. Richmond. Woodside. The Bronx. All those young boys came together to support their friends. They came to stand with them and fight. The story is beautiful and the show fantastic -- even the top-of-our-lungs-singing that happens in my van on a daily basis bears witness to the great music. But please don't miss this -- the best part for me is that when times got tough, those kids pulled together and fought the fight in solidarity.

I know. What in the world does this have to do with me?

Some days I feel like I have been fighting for almost 20 years for my boys to have the rights and opportunities afforded to able-bodied children in this country. I would attend IEP meetings with some dear teachers and principals who with one unhidden eye-roll could speak volumes about the effort that they felt providing an education to my boys cost.

This week as confirmation hearings for the new administration are held I have heard over and over again how challenging compliance for giving children like mine an equal education can be. I feel so sick listening.

As most of you know who have been with me here for long, we love Disney. Going to Walt Disney World or Disneyland has been a privilege that has allowed us to feel less different. More included. And we adore the memories we have made at both places.

But even there, I am fully aware of the eye-rolling going on as we enter a wheelchair loading zone and the line is held up momentarily. I am embarrassed to tell you that I work hard to keep our Fast Passes visible to all as we enter so that they can not judge us harshly. I am all but shouting, "We waited too, we played by the rules".

I see the disgust when the bus driver asks people to get up because he has to fold seats up for my boys. I try to apologize always and thank them repeatedly. I feel it is my job to entertain crying overtired children on the buses because I somehow need to pay for the "luxury" of taking those seats in order for my son and his wheelchair to have a spot on the bus.

But I always assume that those feelings are from my exhaustion -- that I am overtired and over thinking things. I assume that people are good and when they see my son having to drive onto the bus that their hearts are tender to him and they don't really mind that they have to give up the seats. I hope that it is my exhaustion. I pray that it is my exhaustion.

Sadly, today Wade was looking for the answer to a question on a Disney discussion group and found these two posts -- really he found this first one and felt a need to respond -- something he never does -- thinking his gently telling them about Benjamin would remind them to be compassionate.

Wade responded by telling them how much "ADA Compliance" meant to his Disney-loving son in a power wheelchair, the one for whom the ride has to pause briefly.

This was the reply to CP Dad, my husband.

Oh wow Vectrex and Barb, you just confirmed all my worst fears. 

In recent weeks I have had private messages, emails and texts sent from friends wanting me to know that they would stand with my family to defend the rights of the disabled if necessary. Friends that recognize we need to move forward with making this nation accessible -- not stand still or God-forbid move backwards.

And so, when those Newsies from Brooklyn show up and say "We are here. We have your back," I cry. I cry. Because so much of this journey has been isolating. So often it has been me on one side of the table and a grade of teachers and school administrators on the other. So often it has been me at doctor appointments and seating clinic visits trying to find the best orthotic to help Mason walk, to help Benjamin stand. So often, it has been Wade and I sitting across a table from each other searching for the right surgery, the right surgeon. When all our "experts" wanted to bow to Wade's expertise but that meant making the decision alone, himself, for our children.

So often the bus for the school field trip was inaccessible which meant Benjamin and I rode alone in the van while everyone else rode together.

So often we sit alone in the back of the theatre, the church, the movie because the best seats are elsewhere and no one wants the accessible seats -- or those near us.

So often. Alone.

In the Fall the elevator broke and Benjamin could not get to the theatre for opening night of the show he had served as Dramaturg.  After feeling like our efforts might be exhausted, I ran up the stairs to tell them it wasn't possible to get him there. The beautiful ticket coordinator looked at me and said, "The cast says they will not go on until Benjamin is in the theatre."

I cried.

My Benjamin was not alone. Those kids might as well have been signing "Brooklyn's Here" when we rolled in!

And so I will focus on those stories and will re-read my messages of solidarity. And will pray that those who would eye-roll and those who will post on discussion boards will be few. And I will pray that friends will come alongside us and say NO to the eye-rollers and REPRIMAND those bothered by Haunted Mansion pausing. I pray for friends who will throw their fists in the air and sing with me "Brooklyn's Here!"

Honestly, we should probably go on and learn the dance!

Carol - The Blessings Counter

Tuesday, January 10, 2017

Is it counter -- someone who counts -- or counter -- like a table top?

I have been full of angst for the last couple of days. I have allowed myself to be pulled in to social media bickering in a way that is just not healthy for me. By the time my husband arrived home tonight I was vacillating between tears and rants. Just the welcome he wanted, I have no doubt.

So imagine the timing then, of my precious 11-year-old looking at me an hour later and asking this question:

"Mom, why did you name your blog "The Blessing Counter?"

Sweet little Red was only three when Mason set up my blog and the trio urged me to share our story, of course she has no memory of how we came up with the name.

And so I began to explain:

Sometimes it is hard to be a special needs family. Sometimes,  we can get focused on the hard parts of it -- the surgeries, the trials, the struggles, the fighting for rights. I know it is not healthy for me to focus on the hard stuff, on the negative. I needed to count my blessings every single day....

I was kind of on a roll, about to regale her with ways I have tried to do that in this little space but it was here that she interrupted me:

"Oh COUNTER like you were COUNTING. I always thought it meant a a table top."

Doesn't that make you smile? I kind of love the imagery actually. I would love for you to pull up a stool and have a cup of coffee at my Blessing Counter!

So tonight, I can think of nothing better than to sit at this counter and look through some photos from our trip to Israel this Fall. (A certain redhead needs me to post them here so she can access them at school for a project....and I really think my heart could use the memories tonight.)

So pull up your stool -- tonight I am serving... 

Mount of Olives looking out toward Jerusalem.
Jerusalem looking at Mt. Moriah -- where the mosque is currently located (see the gold dome?).

Inside the room where Jesus had the Last Supper with his disciples. Changes have been made to the room from different groups over the years but it has always been protected.

Outside the upper room.

A remaining section of the Western Wall -- the ancient wall of the Temple courtyard. 

So you can see how close the mosque and the wailing wall are in proximity.

The path Jesus took to his crucifixion.

Something for everyone?

I love the old city of Jerusalem.

I also love the "new" city of Jerusalem.

And finally my friends, I leave you tonight with the Sea of Galilee. It was here that Jesus walked on water. And even held out his hand for Peter to climb from the boat and walk to him. It was here that Peter actually took a few steps on the water right before he took his eyes from Jesus.

But most importantly for this season in my life -- it was here that when the storm raged and the disciples became frightened, Jesus calmed the storm.

My prayer is that this year, you may feel the very real calm that Jesus offers to the world.

Carol - The Blessings Counter

Friday, January 6, 2017

My heart was on lockdown today. My heart.

The text had just popped up on my phone that Little Red's school would be letting out at lunch due to the weather (Sleet, icy roads and a run on milk and bread down here today!). I was smiling from ear-to-ear because I knew she would be thrilled to be spend the afternoon with her college kids -- and I would be delighted to have all my chicks home in my nest.

So when a second text popped up I barely glanced down -- but the barely was enough to see the word "lock down" and force me to grab my phone immediately! The information was very scant -- Cate's school was on lock down at the urging of the local police. Lock down.

I wasn't sure what to do. My instinct was to get as close to campus as possible. I felt a pit in my stomach.

Fortunately for us, the all clear was given within half an hour. The situation was secure and we could proceed to pick up our kiddos as planned for the early-snow-release. I could not get her in the car fast enough.

My precious girl had her own story to tell:

She and her friends were walking out of the Epiphany Chapel service elated to find snowy ice on the ground and falling from the sky. She said they were trying to get enough for a snowball when other students started yelling for them to get in their classrooms. She said, "We were like, it is JUST snow. It won't hurt us."

Right until she saw the faces of the teachers urging them inside, that's when she knew it was something other than the snow. Sweet girl described where they hid and how they did exactly what they had practiced in lock down drills before. She said someone on the loud speaker kept telling them this was NOT a drill. She told me who cried and how she wanted to comfort them but they weren't near her.

She told me how she and her little friend held on to each other in fear.

But when I asked her if she cried, she said, "Uh, no. Of course not."

Which was good because I did.

Today two people fought at work and one pulled out a gun and started shooting. According to our local news, he shot 14 times but only hit his target once. He had more weapons in a backpack.

And all of this happened across the street from my baby's school.

When I was little, we practiced tornado drills. We pressed our heads against the inner hall walls and held a textbook over us. We occasionally practiced fire drills where we had to evacuate the school as the principal timed us to see how quickly we could do it.

I never remember hearing "this is not a drill" for either instance.

But I grew up in  a world where people didn't carry guns in their backpacks and start shooting in restaurants known for their delicious cinnamon crunch bagels and coffee! I grew up with a mother who couldn't name a long list of schools where gunman had opened fire.

That is not the case today. Cate had practiced this drill. She and her classmates knew exactly what to do today. And please understand how grateful I am for that!

But really, when are we going to stop this madness and do something to prevent what happened today? There are too many Mamas who never got the all-clear text to go get their littles because of a mad man with a gun.

For the love of all the little girls huddled together holding each other in their hiding place at school, can we please do something to stop mad men from waving guns?


Carol - The Blessings Counter