The Most Sincere Pumpkin Patch

Once upon a time the kids did not have school and the weather was perfection so we spent the day on a farm.  A wagon took us to the patch where we picked pumpkins still attached to their vines.  We bounced in the bounce houses. There was funnel cake and pumpkin ice cream, and an apple cider slushi, and a 3D alien haunted warehouse, and a corn and hay bale maze.  I am certain the Great Pumpkin would agree that we found the most sincere patch of them all.

Trunk or Treat 2015

The PTO put on our school's first Trunk or Treat on this fine October evening.  For those unfamiliar, this is an event where trunks are popped, decorated, and children travel from car to car to Trick or Treat.  A DJ, pretzels and pizza added to the fun.

"I want to be a fox and a pirate," Helena declared weeks ago and she stood by her plan.  

I donned a witch's hat, Alexander was an alien from Alien vs Predator and Sophie went as Doc McStuffins.

Mark arrived after working late and helped us set up our bubble machine.  He discovered that taking flash photography of bubbles mid-flight produces quite the image.

Despite Alexander and I having pneumonia (and spending a bit of time in the van in front of the heater) we were glad to have gone to witness the benefits of inclusion in action.  Sophie was interviewed by the high school tv kids who knew her from summer camp.  Her friends from class came and spirited her away from me for most of the event.  Would this be the case if she remained unknown to them?  I know in my heart it would not.  This is why our advocacy, promotion of inclusion, acceptance, and respect do not get sick days.  We do it for Soph and for all of us who happily reside outside of "normal."

 My little Hamlet

Beyond Awareness

October is my favorite month of the year for many reasons; Halloween, pumpkin flavored everything, football, apples and cider, a chill in the air, turning leaves, hay rides, scary movies, footie pj’s, and tights. So here it is, October 1^st, and I’m enduring an internal debate. I’m exhausting myself (as per usual).

This month highlights awareness campaigns for Down syndrome (DS), domestic violence (DV), & breast cancer. These 3 are big in my world and 2 of them have had great success in making us aware. Thanks to recent news surrounding the NFL, DV is finally starting to get the attention needed for real change. I pray the world doesn’t get bored and move on.

As I think about how I want to honor DS I can’t stop wondering, “what is normal?” What does it mean to be low or high functioning? What does a typical family or typical existence look like and how is that so different from my own? Disability is normal. It is a part of the human experience whether it happens prior to birth or later. Whether it is 'cured' or managed.

Everyone has challenges. Everyone. Sometimes they are financial. Marriages fall apart. Families are blended. Single parents do the work of a village. People lose jobs or get diseases. Those living with mental illness are stigmatized and are failed by a broken system. Our LGBT community still fights for fairness within the law and for the right to walk down the street without being brutally assaulted or shunned by our families. Addictions and sexual assault are commonplace. Sometimes through accidents or illnesses our loved ones pass away too soon all the while we continue to get older every day. Which of these are abnormal?

Awareness campaigns come from a wonderful place. When you are aware that early detection can increase your chances of surviving breast cancer, you’re more likely to feel your boobs and see your doctor. When as a society we begin to hold abusers and sexual assaulters accountable for their actions, survivors will be more likely to seek help and hopefully violence will lessen. When we tell you that language has power, those with compassion choose words that don’t demean. The invisibility of Autism dissolves as others comprehend public meltdowns.  As we continue to demand equality, our kids with special needs will receive the supports and services they need to thrive in school and in the community throughout their lives.

Those of us involved with Down syndrome awareness open our lives to the world. We let you into our private spaces to witness the gold, the shit, and the mundane so that we are no longer outliers, invisible pariahs and therefore irrelevant or scary. We strive to create a society where normal means acceptance, inclusion, equality. In doing so we support others facing similar challenges. We aim to make the world a safer place and I know we have.

And yet I’m restless. I’m beyond awareness. I want revolution and I want normalcy. My life’s work is to battle loud and fierce regarding; housing and program wait lists, budget cuts for education, supports, and services, funding and access to disease cures, legalizing medication that is long overdue, rights for all regardless of ethnicity, genitalia, religion, or who we love. I dream of a time when all of us are normal, where knowledge and understanding are so commonplace that what currently makes us outsiders will be nothing more than attributes to describe our existence to one another.

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

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.

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.