A cemetery? Really??

I am fairly certain that only our family could smile, giggle and take joyous photos this holiday season...in a cemetery.  Don’t judge.  Believe me when I tell you, those we were visiting would’ve preferred it that way and I know for a fact they are beaming with pride. 

    I know for a fact that Mommom Marna and Poppop Herb enjoyed hearing giggles and seeing smiles from these two cuties…

I know for a fact that Aunt Susie appreciated that Bear stopped for a photo op on her gravestone…

I am blessed to have known the Groh & Lauver clan while they were here on earth.  It was some of the best experiences of my life.  So to pay my respects for the kindness & warmth they shared with me over the last two decades, before they passed, I had cemetery mounds designed by someone who knew them.  Today was the day I carved out time in The Rohe Girls demanding schedule to celebrate their lives, and to let them know that we still care and miss them every single day.  I had hopes that they would feel the connection with their grandchildren (and great-niece), as they were not afforded an opportunity to meet Hannah & Natalie before passing on to the afterlife.  With the exception of Marna & Hannah, they had four precious months together. 

     Not a day goes by that I don’t forget to remind Hannah that she has Mommom Marna’s eyes & baby-fine hair, her Poppop Herb’s hair color & eye brow musculature (is it weird that I notice that?) and Aunt Susie’s love of girlie-girl style and knack for drama.  Their photos grace various frames within our home and I am proud that Hannah can identify each of them.  I intend to do the same for Natalie and I can’t wait to see which characteristics she inherits.

    I hope each and every one of you are able to live in the moment this Christmas.  Take a minute…step back…look at what you have directly in front of you…treasure it.  

7 years ago today

I remember vividly, December 18^th 2004 we were at Ben’s cousin's Christmas Party when his home phone rang.  This was a time before people had their cell phones attached to them 24/7.  Jory came into the room to let us know that Ben’s father (Herb) had passed out and was going to the hospital via ambulance.  Ben and I decided to go to the hospital to offer support to his mother.  This had to be scary for her, as she was present when he passed out.  Upon our arrival, I was expecting to be told to have a seat in the waiting room.  Instead we were escorted back immediately and it wasn’t until we reached our destination, a private waiting room (which, at a much later date, I found out it’s labeled as a “crisis” room) , that I realized the severity of the situation.  Ben’s mom broke my heart that night.  Her meltdown when we walked into the room was gut and heart wrenching.  She had witnessed her husband ‘passing out’, she was scared and she was dropped in this room all alone while Herb was whisked away for a battery of tests.  That evening moved quickly yet slowly.  What felt like minutes after being escorted into our personal waiting room, an ER doctor introduced himself and broke the devastating news.  The room was spinning, I thought my heart was going to literally beat itself out of my chest and I felt like I was going to pass out, vomit and poop myself all at the same time!  I couldn’t believe what the doctor just told us.  Here I thought Herb may have had a heart attack or went into diabetic shock, but nothing prepared us for reality; Herb suffered a massive stroke. He was no longer the man, father, husband, uncle or father in-law that we had all known and loved.  The doctor had explained that Herb would never wake up, his brain was no longer functioning and the breaths he was taking were thanks to life support.  We were able to sit with Herb in an ER room while he awaited a room in the ICU.  The three of us sat in silence, Ben on his mom’s right side and I on her left.  The doctor had mentioned that any movement Herb made was involuntary, so when I saw his foot shaking as if he were cold, I couldn’t help but cover them with a blanket and rub his feet.  Herb received a room in the ICU around 3am.  Each of us had a chance to visit once the move was complete.  Little did I know, this was the last time I would see him alive.

     As Marna and I waited in the lobby of the hospital for Ben to bring the car around, she said to me “I told him that I would bring him home and care for him and after I said that he squeezed my hand”.  With that comment, my heart broke and it broke even more after I reminded her that his movement was involuntary.   Ben and I had gotten home when most were getting up for work.  We were barely settled into bed when we received a call that Herb’s body was shutting down.  Within hours of that call, he

passed away…December 19^th,  2004.

     A few days after his death, Ben and I were having lunch together and I began to cry.  Ben gave me a look like Sweet Jesus Shawn, not here!!  I was crying because I realized that time was not on our side.  I had always heard that once one spouse passes, the other could pass away within a year.  Ben’s father  and mother were very close…they did everything together.  They were the cute older couple that you see out at the market or dinner; So the fear of losing his mom was significant!  Ben and I were waiting for the right time to start a family.  It was at that moment during our lunch that I realized “is there ever a ‘right time’ to start a family? Would it be a certain amount of money in the bank?  Would it be when our social life began to quite down?”.  Ben and I decided that we would throw caution to the wind.  

Stay tuned to find out what happened next....

Down Syndrome

In 1991, my cousin Kyle was born.  His parents discovered that he had Down Syndrome after his birth.  I remember my family having a sullenness after discovering the news.  I remember thinking "why is everyone so sad?  It's not like it's some horrible disease and he's been given days to live".  Eventually attitudes changed. The family began to openly discuss it and stopped treating the situation as if he had been born with three heads (although if he had, I would have felt horrible for my aunt...just the thought of birthing a three-headed baby makes my vag ache!). I remember spending the summer with my aunt and Kyle. I would go with her to his therapies at Delaware Curative. When I would babysit, he and I would work on his home exercise programs. I became fascinated with his development, even though I had no comparison.  I knew what a delay was, but I didn't make the connection to compare him to other babies his age to determine his delay (and just for the record, that is COMPLETELY the wrong way to determine if your child is delayed!!  Every child develops differently, disability or no disability).  I adored Kyle. I loved his features, his characteristics. I was in awe of that little boy. I was so in love with Down Syndrome that I based my 10th grade biology research paper on the chromosomal abnormality.  It was during this time in my life that I officially knew what I wanted to be when I grew up...a therapist that worked with kids!
     Fast forward MANY years...I'm still madly in love with my cousin Kyle. He always brings a smile to my face.  He is the reason I'm an Occupational Therapy Assistant. He is the reason I worked with kids with disabilities and developmental delays. Since the day I first met him, I have been- for lack of a better word- obsessed with those with Down Syndrome.  Often staring at anyone I see with those distinct features;  just wanting to run up & hug them, get to know them and hear their story.  
     I love everything about them. I love their short stature and short fingers & toes. I love their fair porcelain skin and the occasional mottling. I love their light fluffy hair (kinda reminds me of cotton candy, which I also obsess over!). I love when they smile and their tongue protrudes just a little bit farther out of their narrow mouths. I love the extra skin on the back of their necks and their pudgy, wide feet.  I love that due to the low tone they have a very similar way of holding their hands and arms and that when they become excited, they shake their hands as if they're waving. I love their almond shaped eyes and the flat bridge of their noses.  Seriously?  That is quite possibly my favorite part!  I love their tiny ears and their round bellies. I love that when they're tired their lower jaw juts forward. I love how warm, social and caring they are.  I love the way they rest their hands on your face, ever so gently, and gaze into your eyes.   What I love most??  That God blessed my youngest daughter, Natalie, with her very own extra 21st chromosome.  Trisomy 21 is a beautiful thing!