More on the R Word Campaign, 5th Anniversary

Here is another great piece on the Spread the Word to End the Word Campaign by Lawrence Downes in The New York Times, March 2, 2013.  Just think of how many people have heard our message since this movement began 5 years ago!

(excerpt) …people can be thoughtless and cruel, or well-meaning, and never know the damage their words can do. The campaign is about inclusion. History is full of stories of people from outside who fought their way in. To those with intellectual disabilities, it sometimes seems the battle is just at the beginning, when little victories — like an end to insults — are hugely important.

For the complete article, visit HERE

Take the pledge today www.r-word.org

Download the graphics, (the fb cover photo is great!), badges, posters and more HERE!

Keep Spreading the Word

My crush on this man only deepens.  The campaign to Spread the Word to End the Word is coming up on March 6th.  Watch the embedded clip below of John C. McGinley talk about his son Max and why this campaign is so important.  Don't forget to take the pledge today at www.r-word.org

Sanctuary

I grew up in the Presbyterian church that my mother attended as a child and where she later married my father.  My sisters and I were baptized and confirmed there.  Mark and I were married there as I had always dreamed.  When we visit my hometown, the sight of the tall, stone, gray building lets me know I’m home. 

I married a lapse Catholic (his words) and I wanted to find a church home that would be comfortable for both of us.  We joined a Lutheran Church and it worked for our growing family.  Alexander and Sophie were baptized there.  We moved and joined another Lutheran church that was just as welcoming and we remain friends with our pastor to this day. 

Our family relocated here 2.5 years ago.  This time when we moved, we knew that this new place would be our home for many years.  We could finally settle in, yet somehow finding a new church community wasn’t a priority.  It began weighing on my mind and last Sunday I started church shopping.  Despite the fact that we had been going to a Lutheran church, I felt drawn to my roots.  A sprawling Presbyterian church not far from our home had caught my eye.  I was taken by the stone buildings which are typical of old churches in the area.  Leaving my family at home I attended the late service.

The magnificence of the architecture inside stunned me.  As the services began I couldn’t help but look around in awe as the morning light shone through the stained glass.  We sang Gloria Patri and I realized how much I missed the traditions of my denomination.   I can’t tell you what the sermon was about, but what did stand out for me was the sound of the choir who sang in the balcony behind the congregation adding a depth and beauty to the hymns.  After the service, I was collecting information for visitors when I met the membership staff member.  She spent a better part of an hour telling me about the history of the church as we toured its grounds and I knew I had found our new church home.

*kids building

 

  

This morning my family arrived early at our new church, and I was beside myself with excitement to show them around.  Our first stop was the children’s building for infants through 5th graders.  Not only is Helena’s classroom for Sunday school, but they also have a preschool there during the week as well.  We have applied and are hoping to send her there next year as we have not been impressed with her current school.

*3 year olds classroom & weekday preschool

 

*2nd grade

*hallways

 

*kindergarten

Today was an important day for the congregation as we welcomed our new head pastor for her first service with us.  After the service my family toured the rest of the grounds.  The original church, now reconfigured and called the Chapel, still has its original Tiffany stained glass windows.  The Chapel is much smaller than the new sanctuary but is similar to the size of a regular church.  They hold the early services there as well as smaller weddings and funerals. 

*Inside the smaller Chapel

  

*original Tiffany stained glass

 

In the Congregational Hall we gather after services for coffee and treats and on the first Tuesday of each month a massive labyrinth mat is laid on the floor for prayerful walking. The church hosts many adult classes, support groups, and activities here.  The youth begin their Sunday classes in the gym which is attached to the hall.  Week day exercise classes like dance fit, Tai Chi, and yoga are offered there as well as a basketball program for kids with special needs. 

My family has never been a part of such a large congregation (membership is 2,600), but somehow they make it feel welcoming and warm.  I recognized people from last week and a few remembered me and stopped to meet my family.  Alexander says he likes it more than regular school and the girls are excited to belong there.  I see my family here for many years learning, growing, making new friends and I am thankful to have been lead there.

*new church sanctuary

    

*from the left balcony

 

 

*back of sanctuary, choir and organ balcony

 

Although this is a video, I shot it only for the sound of the choir sending us on our way after services.  What a beautiful way to fill us up for the week to come.

Prayers for Alex & Sophie

Meet our good buddies Nancy and little Alex.  I met Nancy within the first couple of weeks of moving out here and we have become great friends.  On Thursday, January 3, 2013 Alex will be having his tonsils and adenoids removed, otherwise known as T&A surgery.  It is fairly common for people with Down syndrome to have T&A surgery and many in our community have reported excellent results.  Alex has been having seizures recently and is on medication to treat them.  His mama hopes that the T&A surgery will mean he can get more oxygen as he is breathing so he can stop taking the medicine.  Alex will also have surgery on one of his testicles.

Nancy and I did not plan it this way, but on the very same day, Sophie will also be having T&A surgery and she will be getting a new set of tubes in her ears.  Especially as she has floppy airways (tracheomalacia and laryngomalacia), her Anesthesiologist has back up plans ready to go if her airways become compromised.  We have high hopes for this tune up.  With new tubes, the fluid that has built up can drain which should lead to better hearing and improved speech.  Once the tonsils and adenoids are gone, we hope she will be much healthier and able to fight off viruses that lead to infections.  Currently she catches every cold and flu virus that she comes into contact with.  Also, Sophie is not a good eater, (understatement of the year).  We hope that as the T&A surgery will create more space in her throat, that she will start eating more foods.

*Alex is due to the hospital at 10am and Sophie at 11:15am.  They are going to be hungry as they aren’t allowed to eat after 11pm.  The surgeries are fairly routine for the good folks at CHOP.  Both little ones will be staying overnight for a minimum of one night and both with their mamas by their side.

Please send good thoughts and prayers on Thursday, January 3rd that my baby girl Sophie and our dear friend Alex have successful surgeries, good pain management, and quick recoveries.  If you could spare a thought of support for those of us in the waiting/hang wringing room, we would appreciate it.

2nd Annual Ugly Holiday Sweater Party

In case you hadn’t noticed, I love a good party.  Especially a party with a theme.  Sure, it’s a pain to prepare, but being with fabulous people having a great time is well worth the work.

No matter how many people attend our parties, we always end up congregating in the kitchen. We hosted our 2nd annual ugly sweater party and this year and added the option of ugly hats.  We take this VERY seriously.  Many think it’s easy to find a tacky sweater but believe you me, it is always a hunt.  I found mine this year at Blain’s Farm and Fleet in Iowa.  We ordered Mark’s wool Cosby Sweater from an Etsy shop (warning, strong language in link, click HERE).  The tag says it was made in Yugoslavia for goodness sake. 

When I say we take it seriously, I mean seriously.  For the second year in a row we ordered a trophy for the winner.  Mrs. Mara Sears was the 2011 winner.  I am thinking of getting a plaque that records the names of winners from year to year.

Last year we had the party at our house complete with everyone’s kiddos.  This year we started at our house with just adults for a couple of drinks and hors d’ oeuvres and after a while we moved on to an Irish pub near by.  Our guests would have been happy to stay at the house but this mama wanted a night out and it gave the other parents a good reason to get a sitter and let loose a little.  Before we could leave, the ballots had to be cast.

Then off we went.  Without kids.  Just adults.  Having adult conversations.

More friends joined us at the pub and we took control of the jukebox.  When I actually take a moment to sit back and let it in, the blessings we have received in our new city and the connections we have made, it is overwhelming.  It was a top night.

p.s. Mark had an excuse to wear the Bowler hat he bought in New Orleans, which made him very happy.

Happy Halloween

The day after Superstorm Sandy, the Kerstings who did not lose power, had us over for dinner, hot showers, recharging computers and baking cupcakes for Sophie’s school Halloween party.

By candle light at home we decorated the cupcakes and watched Charlie Brown movies on the laptop.

Superstorm Sandy tried but was unable to take our Halloween from us. Our power came back on at 5:46am, 32 hours after we lost it. I know because the cable box made a clicking sound and I woke up immediately.  With it came heat, tv, internet, school, and a happy family.

My little wolf

Kitty cat in her award winning costume with her friends 

Alexander as Herobrine from Minecraft 

Helena headed to preschool in costume and the kids got on the bus.  As Sophie goes to am kindergarten and repeats class by attending pm kindergarten, she had two Halloween parties.  In the afternoon, Helena and I headed back to school for the Halloween parade which was held indoors followed by parties in the classrooms.

embedded video below.  If you can’t see it, click HERE

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We were so excited to have the Kerstings join us for trick or treating.  As Ras is from Germany, Samuel is 2, and Klara is 1, this was their first year for trick or treating.  That was a lot of fun to witness. Sophie’s hip started bothering her, so we carried her between houses but had her walk to the doors.  The kids made quite the haul. Getting out of the house and socializing with the neighbors was just what we needed.

Thank goodness our generator arrived on Friday. We will be glad to have it during the next power outage. It’s powerful enough to run the fridge, furnace, and a few other items, which is all we really need.  Here’s hoping that won’t be for a long time.  Happy Halloween!

Frankenparty The Aftermath

What a wicked ride that was.  Late last night Mark and I briefly stood outside on the porch in awe of the movement of the wind through the trees.  We have no damage and no flooding in the basement.  The neighbors to the right have a few downed tree limbs and destroyed patio furniture.  The neighbors to the left have a piece of fence down.  Not bad.  Not bad at all.

Our generator is still en route and we have been out of power since about 11:30 EST last night.  Fortunately we have a gas stove, so heating meals and making coffee in a sauce pan is possible.  We are adding bagged ice to the fridge and so far that is working well.  I had frozen dozens of ziplock freezer bags full of water in the freezer, which is also helping.  We have coolers and ice.

It is a day of bundling up, playing games, napping, and little contact with the outside world.  We have a decorative gel fireplace (picture from Overstock.com below) which uses canisters, like what you heat food in chafing dishes.  In addition to the light, it gives off a nice amount of heat.  I haven’t seen the weather reports on tv, obviously.  Though we can charge our phones with the weather radio, we’ve kept the cell phone use to a bare minimum.

This evening we are spending time at the Kerstings for dinner, recharging batteries, hot showers, and baking cupcakes for Sophie’s Halloween party tomorrow, which is how I can post this update.  School is open tomorrow but there is no word yet on the power.  They will be happier at school anyway than in the chilly dim house.  Plus, Sandy hasn’t ruined Halloween, which would have been unforgiveable.It could have been worse, so we are grateful, but it will sure be nice to have the power back on.