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!

Early Bird Check-In

Seeing as I haven't had a new post in a while, I figured I would share an e-mail that Natalie typed up.  Natalie is staying with her grandparents (my mom & dad) while Ben, Kelly & I take Hannah to Disney World.  Natalie sent the following email to her Mumsie, in regards to her stay next week:

Hello,  seeing as my mommy & daddy have completed the early bird check-in for their stay at Port Orleans- French Quarters, I only felt it was appropriate for me to do the same.  I would like to confirm my reservations at the Ryser Household- 1134 Powderhorn, for 7nights & 8days.  To ensure my stay is an exceptional one, I would like to verify that the following services will be available during my stay:
 ~portable crib with evening turn down service
 ~bottle warmer, bottles chillier than luke warm are unacceptable and shall be spat out
 ~only the tastiest of Gerber stage 2 pureed fruits & vegetables
 ~Similac Advanced (blue label) formula to accompany my thawed boob juice
 ~fresh batteries installed in any and all toys I might deem appropriate to entertain me during my stay
 ~a diaper bag, stocked and ready to go at all times, should I feel the need to go shopping 
 ~unconditional love, affection & attention 24/7 and to make certain you are prepared at all times, I may surprise you with a 3am wake-up call should I deem it necessary!

Please be certain you know how to take & send (via email and/or iMessage) my photo with your iPad, as I would enjoy rubbing all of the fun I'm having in the noses of those that have ditched me for a chance to see Mickey. 

I believe that is all for now.  Should I have more requests, I will be certain to pass them along.

Best,
Natalie R. Rohe





And my mom's response:


Please be assured that this Five-Star stay is only for the most elite clientele.  We are preparing your accommodations to ensure that you will have a pleasant stay.  I have taken note to your request and will have everything in order upon your arrival.  

You will be happy to know that there will be Christmas music playing on a continuous feed, shopping, wrapping, baking and other activities in between your resting periods to help you get in the Christmas spirit

One thing I would like to confirm is that your stay will be at 1136 Powderhorn.

I look forward to your stay.

Personal coordinator,
Kbr

October's Gone

Wow. October is gone. Can you believe that?  Seriously, how does one month go by so quickly?!?  Granted, Ben & I started the month of October in NC for a wedding. We got back just in time to do some laundry and repack for our extended weekend in Rehoboth Beach, DE. It doesn't get any better than spending quality time with friends and family celebrating the life of my rockstar daughter and the thousands just like her that have been blessed with an extra chromosome!  The middle of our month was a giant blur of Natalie appointments and a nasty head cold that made it's way through our home.  Our month ended just as beautifully as it began, a night out with adult interaction; celebrating new life at a baby shower for a dear friend, Melissa,  and an afternoon of making new memories with her family:) and of course, Halloween!  Natalie didn't care much for Halloween, she cried then conked out before we even made it out of the house!  Hannah on the other hand, she was elated and couldn't wait to go trick or treating. She awoke from her nap ready to don her costume and hit the ground running, she was hyped up as if she'd already eaten a fist full of candy!  After 2 hours and hearing "I'm ready to go trick or treating" 100 times, it was FINALLY time to take my crazed toddler out to the crunchy, leaf-filled sidewalks and knock on every door that had a glowing, carved pumpkin adorning there walkways. After the third or fourth house she clearly had the concept down pat, as she was departing the steps of the home she'd just trick or treated she exclaimed "ok, let's go get MORE candy"!!!  And then she proceeded to walk up to Ben and say "up please daddy" and after he picked her up she said "next house please".  And that was the pattern for the evening...Daddy carried her, mommy walked with her up to the door and then Daddy carried her onto the next house.  My girl is smart, she didn't want to waste all of her precious energy:) 

Today marks the 1st day of November. Natalie and I started our day nice and early to join the mad rush of people trying to get into the city for work, I-95 north is always a joy...not!  Natalie receives just about every healthcare service at A. I. duPont Hospital for Children. The Rohe family is all to familiar with that joint!  We know most of the in's & out's and could probably start offering guided tours!  This particular morning we were headed to AI for speech/feeding & physical therapy.  Everytime, and I mean EVERYTIME we  approach that hospital fear & panic race throughout my body, even for the routine and non-invasive therapy trips. Let me explain why... 

  Back in February,  a routine cardiology appt turned into a 5 -day hospital stay so that Natalie could receive a feeding tube and Ben & I could receive the proper training to insert the tube, test that it was properly placed into the stomach, how to connect & disconnect from the pump and how to run the pump, all before we could be discharged to home. Then in March Natalie had a nasty cold and when I took her to the pediatricians office, we left there via ambulance with cardiac monitors and O2 set at 4 liters to get her oxygen levels from 78% to 95%. Natalie was admitted to the hospital and was released a month later after having had heart surgery.

 So...yeah...everytime I enter the gates to that hospital, fear & panic set in. I want to cry and I say a little prayer. Even though this is my reaction every time I get within a one mile radius of A.I., it still does not alter the fact of how grateful I am that we live in a state that houses such a magnificent children's hospital.  So many people travel from far and wide to have their child[ren] treated at A.I.  I'm very grateful that we live so close to a place that has had such a positive impact on my child's life...even if that place causes me to sprout a new gray hair or two whenever I'm within a one-mile radius;)

Just what I needed

Today was filled with fun, girl-y fun. It started with a 2 hr drive into PA for a baby shower. For a stay-at-home mom, 2hrs in the car WITHOUT kids is total bliss!  I was able to blare my tunes and drive fast- not recklessly, just at a faster rate than I would travel with my precious cargo in tow. I even had a perfectly executed excuse that I played out in my head, should I have been pulled over.  The baby shower was fun, I enjoy seeing all the new gizmos and gadgets that have evolved since Hannah was a baby.  I loved hanging out with friends, catching up and having adult interaction.  During the shower I missed a phone call from my friend Tracey, the one who gave me the much-needed kick in the rear to start my blog!   She’s been going through a rough patch and I had recently sent her a pick-me-up card in the mail.  The front: ‘You are the kind of friend that I can say anything to’.  Inside: ‘My butt itches.  See? Anything!’.  So when I returned her call on my ride home I was half tempted to tell her my “butt itches” when she picked up on the other end.  I’m certain that if I had, she would have responded with “yeah…well…maybe you should try washing it every once in a while! Hahaha”.  Tracey & I chatted for over an hour, about life, work, kids, chaos, finances and DD.  She was the best company for my drive home…just what I neededJ

Man-colds & Bayley Scales

Today started out like any other, with the exception that my husband has a cold. It's what we like to call a "man-cold". Not all men suffer from man-colds. To help diagnose, here are a few symptoms:

•over exaggerated coughing, sneezing & blowing of the nose.

•whining "uhhh *cough* I can reach the remote"

•complaints "I'm hot & sweaty, feel my head".

•regression of the man’s actual age.  

After today, I have learned that I am most certainly done having children. For the past few days while Ben has been home from work, I have felt as if I have three children. Hannah is more manic when her daddy is around and with him feeling under the weather, he does not have the energy necessary to keep up with her. Nor does he have the energy for his typical household duties. Therefore I get to handle a toddler that is acting as if she drank the entire pot of regular coffee, an infant whom I am trying desperately to keep shielded from every cough and sneeze within an 8ft radius, double the housework and making sure my newly adopted 33 year old has taken his meds. :)

 As if that isn't enough for one day, God thought it would be hilarious if he tossed in some added stress. As I was juggling a hungry baby, a manic toddler and a bleary-eyed, fresh-from-his-11hours-of-sleep-husband, I realized that Natalie was scheduled to have the Bayley Scales of Infant Development  test. I scheduled this appointment just before leaving for NC and forgot to program it into my phone...and considering my brain is mush these days, my phone keeps me posted on when and where I need to be!  Seriously, I rely TOO MUCH on my phone reminders!!  

  The nurse scored Natalie's test and gave us the results before she left. Are you ready for the results???  This might shock you...Natalie is delayed. Am I surprised? No. Does it sting to hear your daughter is developmentally delayed? Abso-freaking-lutely!  It felt as if someone punched me in the gut.  The nurse was saying that Natalie should continue with physical and speech therapies and that she would like to get ECE (early childhood education) on board as well. ECE is provided by a teacher that comes into our home and works on socialization (reading) and fine motor skills. They will leave work for us to do in between sessions. I wanted to cry. It made me feel as if I am not providing my daughter with everything she needs to develop and succeed. I read to Natalie, we do our own mini OT and PT and speech sessions every single day. I challenge Natalie on a daily basis.  It is my personal goal to have Natalie do everything Hannah can do.  Granted, Natalie will require more time to reach milestones and I am perfectly content with that.  Because when Natalie learns something new, I will be right by her side and I will see to it that she does it the correct way the first time around!  

  Our evening ended with smiles all around. Family fun on the living room floor, followed by Natalie & Hannah having a splash-fest in the tub. Natalie idols Hannah and has such a large part of her heart reserved for her older sister. I pray that Hannah understands Natalie's unconditional love and that she sets a good example for her younger sister.  My girls make my heart melt and my life complete.  Be well. 

One Year Ago...

I remember one year ago, October 2010, saying "I wonder what will become of this in a year?  Will it just be a painful memory?  Will it all be behind us and we can move forward?". There were so many questions unanswered and we were not going to discover the answers until January 2011. See, we had recently found out that the baby girl we were pregnant with had a "fairly significant" sized hole in her heart. The doctors couldn't tell us when she would have surgery, they couldn't tell us how she would manage outside of the womb, and they couldn't tell us if she would survive.  I was trying my best to play it cool, but on the inside I was a mess.  Who ends up having a baby with a hole in their heart?!?  Not me!  That's the kinda shit they make movies out of for LifeTime movie network (I only know that b/c my mom and sister watch that channel and feel the need to explain the movies in detail to me. Hahaha).

 Ben and I had found out that our female fetus had a heart defect in September 2010. That day was surreal. Thank goodness DCMFM made our appointment to meet with a fetal cardiologist at AI Dupont hospital. I truly had no idea where to begin!  I was going through the motions.  When the office called, they told me when and where to be.  I was in such a state of shock and denial that I just went with it.  We met with our future daughters cardiologist, Dr. Bhat.  Truth be told, when I first met with him I was displeased. He didn't fit the description of the doctor I had pictured in my head. I imagined a clean cut, well dressed, brazen asshole. What I got was a quirky shorter guy with outdated glasses, faded pants with pleats, and a shirt and tie that appeared as if they'd seen better days. I wanted to cancel the appointment and go research the best cardiologist I could find for my unborn baby. Instead, I went through with the appointment. I am VERY glad that I did!  Dr. Bhat, despite his quirky demeanor and less than Nordstrom attire, was the best thing that could have happened to our daughter.  In my eyes, he saved her life...more on that story in the near future:)

    So here we stand one year later. That unborn baby's name is Natalie. She is a cooing, drooling, rolling, happy, smiley, beautiful, 8 month old miracle who happens to be the owner of a fully repaired heart!  Believe me, the path between October 2010 to October 2011 was not an easy one.  To answer the questions I had a year ago...YES, it is all behind us...YES, it is a memory...And YES it was painful, but I would not trade it for anything in the world!  

Exactly As It Should

Last night I begrudgingly attended a Special Needs Planning Workshop.  It was hosted through a phenomenal program called delaware family-to-family.  I had signed up for the course 2 weeks prior and when it came time to attend it, I sorta didn’t want to go.  I was letting my fear and anxiety sway my desire to attend.   What if I heard things that I didn’t want to hear?  Like things that I know are realities, but I suppress them in hopes that if I don’t acknowledge it, than I can’t allow the reality become real to me.  Make sense?  No, I didn’t think so!   Hahaha.   It was a workshop based on planning for the future of those with special needs.  It was informative, eye opening, overwhelming and scary.  I say scary because for those with special needs, it’s a completely different than everything I have ever known.  Did you know that leaving money to a person with special needs, needs to be left to a “special Needs Trust”?  That when Natalie is over 18, if she were to receive more than $634, she would be disqualified for her health benefits and her supplemental income.  The lawyer that did a presentation and specializes in handling guardianships, trusts, and estate planning, he informed us that the average cost of a guardianship petition (beginning to end) is $3500.  That is only one piece of this 1000piece puzzle that Ben and I need to put together over the next few years.  It is overwhelming!  We are a one-income household.  Granted, it is our choice to be a one-income household.  Natalie is going to benefit greatly from not being in a daycare setting…less colds, more opportunities to receive PT, OT and speech therapy, more one-on-one attention, needs will be better met by mommy & daddy vs. a random daycare provider that might not understand the difference between Natalie & a typical peer.  There are just as many pros as there are cons when it comes to a one-income household.  So, I left the workshop frustrated at the lack of expendable income, our inability to afford a financial planner to plan for our girls’ future or afford an attorney to make certain our t’s are crossed and i’s are dotted.  As I was pulling out of the parking lot, I noticed an acquaintance of mine was having car trouble.  I stopped to make sure she was ok.  After a quick chat in the rain and another goodbye hug, we parted ways.  As I was pulling out of the parking lot it dawned on me to look at what I have right in front of me.  Look at what I do have, not what I don’t.  I decided to give the negativity a spin so I could view it from the positive side.  If it weren’t for Natalie, I wouldn’t have met the wonderful group of people that I just spent two hours with; I wouldn’t be involved in making positive changes in the lives of those with special needs & their caregivers.  I am so blessed to have all that I do in this life.  Even when I feel as if life isn’t panning out the way I think it should, I try to stop and realize…everything is unfolding exactly as it should.