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.

A Few New Things...

Ben and I are wrapping up our 5 night vacation in NC. Our trip started by visiting friends that have recently moved to NC from DE. It was fantastic to see them again and enjoy their company. I found it funny that the few days leading up to our trip, I was a frazzled mommy who was itching to get away from my girls (don't take that the wrong way...I adore my girls. I pour my heart and soul into them on a daily basis, often neglecting my own needs). As we arrived at Billy & Lindsay's, I naturally gravitated towards their little boy, Kellen. I was sick of my mommy duties, yet I instantly got down to enjoy playtime and reading with Kellen. Oddly it was the same for the dogs, sick of my own pups, yet I happily loved on Nikki & Lucy! Which reminds me, I meant to wash those clothes once we arrived at the cottage in hopes of destroying all evidence and avoid the awkward sniff down of our bags while receiving evil stares from our four legged children.
After our fantastic visit with our friends in Pittsboro, it was time to move on to Harker's Island, NC for 4 days of relaxation and sight seeing. When we 1st arrived at the cottage I wanted to cry. I was just tired from being in the car and needed to satiate my OCD with my typical ritual of unpacking, making our bed and getting settled/organized. Once those we were sharing the cottage with parted ways and headed out on their own adventure, Ben and I had some FaceTime action with our girls. I love the invention of video chat! We loved being able to see our girls at the drop of a hat. Now, there is a downside to video chatting, in someways it felt as if we never left.
Our days consisted of sleeping in, chilling on our private beach, reading magazines, surfing the internet and celebrating our 10 year wedding anniversary!! One night while Ben and I were out, we decided to stop at an ABC Liquor Store. Seeing as we are "from the north", we forgot that you can buy beer and wine at the grocery store. I wish we could have reviewed the security cameras to see our faces when we realized our mistake! Ha! And the two old ladies behind the counter got a kick out of our stupidity too. The following day, the Cottage Crew and I were out on the beach discussing details of the wedding, I realized that Ben's suit would be over kill for the more casual wedding venue. Luckily, I had packed one of Ben's favorite button down dress shirts. It's a cool, linen-y type of shirt that I thought would look good with his jeans should we want to dine on the water one night. Who knew that shirt would be the basis for a whole new ensemble for him to wear to the wedding! Seeing as the nearest town to the Island we were staying on was 30mins away, we quickly showered and headed over to Beaufort. Let me explain something...the seafood festival was in town during the same time as our stay. This is a BIG event for the area we were in. Businesses were shutting down early so they could attend. I knew the only store that would be our saving grace was a Rose's department store. I knew what to expect of this "store", unfortunately Ben did not. I had to laugh! He was such a trooper, going into the dirty unisex fitting room to try on $12 slacks. They fit him perfectly! I even found a pair of flats so I didn't have to wear my heels to the reception in the grass under the tent. A pair of shoes, men's dockers slacks and a shaw came to $26...score!
Fast forward to the following evening and it was time for the wedding, the entire event that sparked this vacation. It was beautiful, very much reminded me of our wedding...it was nice to have a trip down memory lane. The people down here are a different breed from those of us "up north". They are so mellow and kind. Sadly, Just as I was getting cozy and found myself getting the hang of the laid back lifestyle, it was time to pack our bags and begin our 8 hour drive home.
I met some amazing people the evening of October 1st. I learned a few new things about my new friends, a few new things about life and a few new things about myself...
Slow down & Enjoy life my friends.