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.

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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.

Frankenparty

By no stretch of the imagination am I making light of Hurricane Sandy, but I am going to make the absolute best of a bad situation.  Due to the hybrid nature of the storm baring down on us, this monstrous vortex has been nicknamed Frankenstorm.  As such, dealing with it the best way we know how is our #Frankenparty.
I first learned of the coming storm while holding Sophie’s hand in the ER on Thursday night.  We were sent home after her IV of fluids did the trick but I woke up at 4am, unable to sleep.  I decided to get the hurricane preparation shopping out of the way.  At 4:30am I drove to the all night store in record time as I hit every green light.  The shelves were freshly stocked, there were plenty of staff, and no other customers.  Unlike my shopping experience with Hurricane Irene, I had no trouble stocking up on D batteries, bottled water, bread, and milk.  The added bonus of not having kids in tow made this a breeze of a trip.  At lunch the next day, Sophie surprised me by eating mac-n-cheese, which she hasn’t eaten for a few years and is a huge deal.  Afterwards, we had a living room dance party, cuz this is how we do it.


On Saturday, we had a babysitter so Mark and I could walk up to the Villanova Homecoming football game.  Rather than go out to dinner as planned, after the game we came home to continue prepping the house.  My nerves were on edge which meant that I focused this energy on cleaning until 1am.  I didn’t sleep long and was back up early to keep cleaning.  Don’t judge.  It’s how I deal with stress and frankly, the house looks great.
Sunday was a wonderful day.  Our dear friends the Kersting family came over and we had hot apple cider, baked pumpkin bread, did crafts, the kids painted little pumpkins and the adults carved the big ones (Obama’s logo, a Creeper from Minecraft, & Pato from Pocoyo).  We watched the Great Pumpkin, Charlie Brown, and the adults enjoyed seasonal beer.  When it was time to eat, we ordered in.  When it was time to nap, the kids actually napped (holy cow)!  Mark and Ras battened down the hatches by covering the scooter, grill, garbage and recycling cans with a nailed/staked down tarp (pray it holds).
After our friends left, Mark prepped our unfinished basement, which we only use as storage.  We expect flooding, unfortunately, but as of 8pm Monday night, we are still dry (knock on wood).  Our house is made of brick and is nearly a hundred years old.  She is a solid fortress and we feel very safe here.
Mark and the girls crashed but Alexander and I couldn’t sleep so at midnight, we baked a batch of chocolate chip cookies.  He measured, I mixed, we laughed and licked the beaters.  We talked and had the best time.  You really can’t beat warm cookies and milk with your child at 1 am.  As I tucked him into bed he gave me the sweetest smile and hug and said he would never forget this.
The entire region has shut down today and Tuesday, including Mark’s work, the public schools, mass transit, roads, bridges etc.  So, we slept in, stayed in our jammies, and I sipped hot coffee today until noon.  I worked from home, Mark graded mid-term papers, and the kids played.  There were bubble baths and naps in the afternoon while the roast, carrots, onions, and garlic potatoes slowly cooked in the oven, smelling like Heaven.  The power has flickered a few times but hasn’t gone completely out for more than a few minutes.
I ventured out in the afternoon for bags of ice for the coolers, just in case.  The closest place just happened to be a beer store, (ahem).  It wasn’t bad out, just wet and windy.  The emergency weather solar/USB/hand crank powered radio/flashlight/cell phone charger that I ordered was delivered and works great but the generator I bought hasn’t made it yet.  It will be wonderful if we are able to keep the power through Sandy, but knowing that we will have a generator for future storms was well worth it. 
Halloween is Wednesday and it’s too soon to tell if there will be school (or the Halloween parade & class parties) or trick or treating.  Worst case scenario, the kids can trick or treat from room to room at home.  We are prepared for the worst and hoping for the best.  The eye of the storm is over us right now and all is calm, except for Helena, who refuses to wear pants and is demanding to wear her bicycle helmet.

A Friend You Haven’t Met Yet

Sophie was sent home from school early on Monday.  She had put her head down at lunch and cried, refusing to eat.  She had a low grade fever, was not herself, and most strangely was unable to walk normally.  After a nap at home, Sophie was still unable to walk or bare weight without pain, so I took her to her pediatrician.  He sent us to the ER for x-rays and blood work.  The diagnosis was that a virus had settled into her right hip joint, causing inflammation and pain.

Skip ahead a few days.  She has not been able to shake her fever, is still in pain, and has begun to refuse food and drink.  So on day 4 of this illness, we returned to the pediatrician who sent us back to the ER for more testing and an IV of fluid.

We’ve been here for hours and are finally waiting for discharge.  Her blood work looks good.  The rapid strep test was negative, and the IV of fluid perked her right up.  She’s eating goldfish crackers and drinking a little chocolate milk.  They put in a catheter to test for a UTI which was also negative.  She was just dehydrated, which we knew.

Mark and I are here while Alexander and Helena have a party with our friends.  They think it’s a party anyway.  Knowing that we would end up in the ER, I packed plenty of books, toys, and the iPad to keep Sophie occupied.  I brought my laptop and have gotten a bit of work done and Mark is grading papers.  You do what you need to do to pass the time.

While skimming fb, I came across this video by John Franklin Stephens, who goes by Frank.  He’s a hero of ours and you can find another letter he wrote on the sidebar of this blog.  Frank has a way with words.  He speaks eloquently as a self advocate who will not back down to bullies who use hate speech to belittle people with intellectual disabilities.  He does so in a way that is inspiring, powerful, thought provoking, and compassionate, even to those who disregard him.  Though I won’t give the person he is speaking to a moment of my time, I am honored to share Frank’s words as he educates us about the kind of people we should all strive to be.

Thank you Frank for standing up for yourself, for Sophie and all of our friends in this beautiful community.  And with that, this family is busting out of this joint!

The Great Pumpkin

To get us excited for our visit to the pumpkin patch, we watched the Great Pumpkin Charlie Brown for the first time this year and in the morning we met our friends to drink in autumn’s splendor. 

The family farm is a lovely place complete with a hay bale maze, corn maze, pumpkin patch, and tractor pulled hayride.

While we were there Sophie found some of her friends from kindergarten and the 1st grade and they ran off through the maze laughing and chasing each other.  One of the moms stopped to introduce herself and her family.  She had heard about the letter we sent home on the first day of school as her daughter is in a different kindergarten class.  This was the letter that introduced Sophie to her peers and to talk about Down syndrome (click HERE for the letter).  She shared that the parents have all been talking about the letter and love it.  She had gotten a copy because she wanted to show it to her own mother.  It meant so much to them because she has a brother with Down syndrome.  I hope I never get used to these wonderful surprises and little threads that link us all together.

Helena may be the size of a 5 year old, but she really is 3.  She kept getting stuck in this dead end of the maze and would get so mad.  It was hard not to chuckle.

As an aside, would you look at the bone structure on this gorgeous girl? We are in big trouble when she gets older. We could not have asked for a more picturesque day.

Sharing the fun with the K family made it all the more special.  Plus, thanks to Klara who snuggled me up, I got my baby fix, which will hold me for a while.

Sophie’s shirt says, Don’t Mess With Perfection.  Don’t you agree?

We finished the day with naps, a little football and my favorite tv show The Walking Dead (after the kids went to bed of course).  So much of our lives are hectic and stressful.  Days like this fill us up.

Inclusion and the Dignity of Risk, Belle of the Ball, Part 4

continued from Part 3, HERE
Based on the events of last evening, I decided to skip ahead a bit in the telling of Sophie’s inclusion experience in kindergarten.  This is just too good to wait on a virtual shelf.
As with most aspects of her story, it cannot be told without including the whole family and now, her friends.  Her little circle is growing larger by the day.  In the end, inclusion is not just about how Sophie will be educated in school.  It is about her self identity and sense of belonging in this world.  It is about being the best that she can be and being accepted as a valued member of the community.
In this recent post about Making October, I wrote about the Halloween costumes that I was making for the kids this year.  Helena is a wolf, Sophie is a cat, and Alexander is Herobrine, a character in the computer game Minecraft.  My deadline was 6pm on Friday so I had less than a week to pull them together.  The elementary school PTO hosts a Halloween Spooktacular every year.  It is in addition to the traditional costume parade and classroom parties that take place on Halloween.  They pack the gym with Halloween crafts, games, music, and pizza.  The costume contest is done by grade and there are between 3-4 classes per grade.
Sophie had taken a little nap between school and the party.  When we woke her up, she was very upset.  I had been able to get Alexander and Helena ready with no trouble.  I could barely get her costume on and adding a pink nose and whiskers was not happening.
Everything changed the moment we got to school.  It took us 10 minutes to make it from the hallway to the gym as Sophie’s friends and some of the parents stopped to chat and admire the  kids’ costumes.  Once inside, it was mass chaos.  The kids preferred to mingle with their peers on the stage over doing crafts and games.  It was hot in that gym, especially for those in costume.  Grinning from ear to ear we watched as not only kindergartners but older kids came up to Sophie, excited to see her.  It was a real love fest filled with dozens of hugs.
The time came for the costume contest and Sophie lined up with her best buds.  Alexander was a real ham, posing and showing off the diamond sword his daddy had made for him.  By then his makeup had been sufficiently sweated off, but he worked it.
After each grade had their turn on stage and the judges made their decision, they were ready to announce the winners.  By then we had made our way across the gym to enjoy some cold chocolate milk when they announced that the prize for best costume for kindergarten went to the little gray mouse.  Remember, Sophie was a cat, a little gray cat, not a mouse, so I wasn’t sure they were talking about her.  Still, I lifted her up to my right shoulder over the crowd, as if to say, “this little gray mouse?  Is this who you mean?”  She had won and as it was impossible to maneuver through the crowd on her own, I kept Sophie on my shoulder as we made our way to the stage.  I’m not going to lie, it was a bit of an out of body moment for me.
We got to the stage and they took her name.  I didn’t care to correct them about the mouse/cat thing as I was too busy grinning and snapping pictures.  I just watched as Sophie stood proudly, holding her prize of popcorn, candy, and a movie pass while her friends cheered, “Yay Sophie!”  Alexander quickly got over not winning against the awesome Lego man of the 2nd grade and was truly happy for his baby sister.  We headed home to enjoy Sophie’s prize. 
Her daddy said it best, not only because of the contest, but how fully her peers, their parents, and even the older kids have embraced her, our little Sophie was the belle of the ball.
to be continued…

October Down syndrome

Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!