Tuesday, July 9, 2013

Impromptu Date Night with a side of Speech Therapy

Two Friday's ago during Natalie's speech therapy session, I approached the topic of weaning Natalie off of straw sippy cups and inquired how I might go about introducing a regular cup for her to drink from.  Natalie's rockin' speech therapist was all over it!  She darted out of the room with insane enthusiasm and returned with at least 10 varieties of liquid holding apparatuses; dixie cups, nosey cups, medicine cups, tumblers and tupperware.  Sixty minutes later, Natalie and I walked out of her session with a game plan devised by her SLP & me.  The following night Ben & I had an impromptu date night with Natalie in tow.  



























                                                                         
 After an intimate dinner on Main, 
we strolled over to our local Starbucks (sidenote: I'm so in love with Starbucks, I've attempted to get my mom & sister to work there...just so I could have free drinks!  Both attempts were an epic fail.  Plan B:find a handsome barista and date him on the side;-) )  While we are placing our drink orders I notice Via Refreshers on-the-go packets in a new flavor...Valencia Orange.  I quizzed Jonathan as to which flavor Refresher he would prefer "the Orange or Lime?" he said "If you remotely like orange, I recommend going with Valencia!"   SOLD!  I added it to our order.   Sweet barista Jonathan surprised us and fixed a sample of the Valencia Orange Refresher and served them in these adorably small Starbucks sampler cups.  Soooooo, naturally I had to have Natalie practice drinking from the cute cup!!   AFTER I shared some of my sample with Natalie, barista Jonathan notified me that "the Refreshers do contain caffeine!"  I promptly informed him that I would be dropping her off when they closed and she would remain in his care until she fell asleep! 





 Needless to say, I kept the cup and I make her practice with it one meal a day...with water, NOT the via Refresher! Hahaha.

Monday, July 8, 2013

Unk- Quiet, Gentle & Kind


   


 To say today was exceptionally challenging would be an understatement.  Each of us said goodbye to a portion of our heart...some more than others.  

     Raymond, Ray, Unk, Unk the Great.  Those were just a few of the names Ben's uncle acquired during his 77 years here on earth...and I can't believe it's been over 2 weeks since his passing.  Every time I pull onto the family property and behind the big house, I expect to see him outside doing some type of yard work.  It was an unexpected passing and it's jolted each and every one of us. 

   I was blown away when Unk's wife, Arlene, asked me to do a reading at his funeral.  What an honor to be able to speak at such an amazing man's end of life service.  Of everything he has accomplished, I felt out of place being the person chosen to pass along the following message:

{Go placidly amid the noise & haste & remember, what peace there may be in silence.  As far as possible without surrender be on good terms with all persons.  Speak your truth quietly & clearly; and listen to others, even the dull & ignorant; they too have their story.  Avoid loud and aggressive persons, they are vexations to the spirit.  If you compare yourself with others, you may become vain & bitter; for always there will be greater & lesser persons than yourself.  Enjoy your achievements as well as your plans.  Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.  Exercise caution in your business affairs; for the world is full of trickery.  But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism. Be yourself.  Especially, do not feign affection.  Neither cynical about love; for in the face of all aridity & disenchantment it is perennial as the grass.  Take kindly the counsel of the years,  gracefully surrendering the things of youth.  Nurture strength of spirit to shield you in sudden misfortune.  But do not distress yourself with imaginings.  Many fears are born of fatigue & loneliness.  Beyond a wholesome discipline, be gentle with yourself.    You are a child of the universe, no less than the trees & the stars; you have a right to be here.  And whether or not it is clear to you, no doubt the universe is unfolding as it should.  Therefore be at peace with God, whatever you conceive Him to be, and whatever  your labors & aspirations, in the noisy confusion of life keep peace with your soul.  With all its sham, drudgery & broken dreams, it is still a beautiful world.  Be cheerful  Strive to be happy.}


       Doting husband & magnificent uncle; our very own animal whisperer.

Unk & Hannah; touring the property



Unk & Mai-Tai
Arlene & Unk

Ray, Marna & Herb, Tabitha
Ben's Uncle, Mom, Dad & sister



Wednesday, March 20, 2013

World Down Syndrome Day- Video

Hello there!  Happy World Down Syndrome Day :)   I can't believe this day is finally here!  Natalie and I have big plans and lots of fun to cram into this 21st day of March!!
  Back in October 2012 I had this brilliant idea to make Natalie a special video for her 21 month birthday; that day came & went and the video was only in the beginning stages  Then I decided that I would complete it as a gift for her 2nd birthday...yeah, that didn't happen!  At the beginning of March is when I finally had my ah-ha/lightbulb moment!  March 21st is World Down Syndrome Day; a day used to increase awareness and break down the negative barriers built up around those with Down Syndrome. Why March 21st, you ask?  Because it's 3. 21 and those with DS have an extra copy of their 21st chromosome.  To honor Natalie on this very special day, I made her an extraordinary video and there simply could not be a better day to launch it!!

I dedicate this video to my delightful daughter, Natalie!!  
   

video


Mobile version.....

video

Tuesday, February 26, 2013

Spread the word...


  What. A. Day.  Simply amazing.  I’m on cloud 9.  My heart is bursting at the seams. 
      Natalie and I set out first thing this morning, headed to A.I. for Natalie’s back-to-back OT & PT sessions.  You see, she missed her OT session yesterday because her mommy allowed her to play hooky.  Natalie had an opportunity to drive her Mater car around the gym at the ELC because the Go Baby Go! project was gathering for the filming of a segment set to air on WHYY.  Believe me, I pondered it all flippin’ weekend.  Himming and hawing…weighing the pros and cons as if it were a life or death decision.  It was an opportunity for my daughter to potentially be spotted on a local broadcast TV show.  In the end, I made the executive decision to allow her to participate and in the end, I was so glad I did.  It turned out it wasn’t just an opportunity for her to be recorded and potentially be on TV..it was something more...something I didn’t realize.  The pre-school children that attend the ELC have ‘gym class’ time slots in the morning hours.  This allowed Natalie the opportunity to interact with her peers!  She was able to get down, crawl around, and play, touch, interact and see her peers in action.  Talk about a proud mommy moment…it brightened my entire morning and eventually spilled over into my afternoon and evening.  Enough on that topic…back to where I started!  We almost never do back-to-back therapy sessions for Natalie because it has proven to be too much for her.   Today was an exception; we threw caution to the wind and ran with it.  Sure enough, my girl rocked it.  See for yourself….


video

video


    Oh…wait!  I almost forgot.  Before therapy started, I needed some form of caffeine…off to AI's cafeteria we headed.  After we checked out, I stopped to get Natalie settled with a drink and a snack of her own.  During that time a mom approached us to talk to Natalie and inform us she has a 10 year old son with DS and shared with us her story.  I love it.  I simply adore that other families, friends and even teachers of someone with DS feel comfortable to approach Natalie and I.  It warms me to the core.

     After therapy we packed up and headed north, to Winterthur.  Natalie had a pair of jeans from Gymboree that turned out to be ‘skinny fit’.  Have you seen her shape?  It’s extremely similar to mine…and we are NOT skinny jean material!  Hahaha.  So we dropped them off to Natalie’s friend Charlotte.  Once we ended our lovely slow-paced drive around the grounds of Winterthur we headed into Greenville.  We stopped at Delaware Running Company to register & pay for an upcoming race.  As we were headed for the door, I was walking & Natlaie was crawling (at her usual fast pace), the guys yelled out “Hey!  She’s quite fast.  Do you want to get her fitted for some running shoes?!?” 

    At this point, I have exactly 30mins to get from Greenville, home and then to Hannah’s school.  Guess what.  We managed it!  It may or may not have included me cutting off one of Hannah’s classmates mother.  Oops!

    Pick up Hannah and zoom off to my grandparent’s house; Hannah spent some quality time with my Gram & poppop while Natalie and I headed off to my alma mater.  I was asked by Amy, one of my fellow Caravel graduates & mommy to Kayla (who also rocks her own set of designer genes) to join her in speaking to some students about SPREAD THE WORD TO END THE WORD.  As I headed back to the school where I gained my 4th through 12th grade education, I can’t even begin to describe the emotions that were coursing through my veins.  In my head as I drive the grounds of Caravel: ‘Oh look, the little gym, I remember watching it being built.  Hey, wow…there’s where I had my first make-out session’.  Oh the memories that came flooding back, they made me chuckle & blush.  I have to admit, it felt so weird parking in the same parking lot that I parked my junior and senior year; except this time I was unloading a stroller and a toddler from my, dare I say it, mini-van.  Walking into the 400 wing office…I honestly wanted to puke.  There was rarely a time I was in that office for pleasure!  The ambassador of the Blue-Gold High School participants walked us down the halls of 400, through the 500 wing and into the newly added 600 wing.  I was in complete shock at how the school had evolved, yet stayed the same.  By the time we reached our destination, I was in complete awe and wondered how long my mouth had been agape…and how many students saw me like that!?! I hope it wasn’t any of the ones I was about to present to!!  Hahaha!   Amy and I barely found time to locate a corner to wedge ourselves and strollers into when the bell rang.  Within a 3 min span, 40-50 students filed into the room and in an instant the vast room shrank like a damn shrink dink!  Ruth, Amy and myself dove right in.  Beth’s talk segwayed into Amy’s speech and Amy’s into mine.  You would’ve thought we spent all weekend practicing and prepping our talks & transitions; when in actuality it was all done via email and texts.  Boom!
     It was such an inspiring 45 minute gathering.  Amy and I spoke from the heart and of our own personal experiences with the R-word.  Even if we each reached only one student today, I would consider it a success.  But let's be honest here...Amy and I made a kick-ass team!  We are taking this show on the road!!!

Natalie & Kayla entertaining themselves with the dry erase board:)
Natalie driving her Mater car!

Saturday, January 19, 2013

January 18th


Yeah, yeah.  I know...it's been entirely too long since I last blogged.  My excuse?  LIFE!  Want an glimpse into a day in my life?  Here ya go.....

 After just having fallen asleep 2hours prior, my day, January 18th, started at 1:40am when Hannah woke me so she could "go potty" (despite my best training efforts, she refuses to go to the bathroom by herself in the middle of the night!).  As I escort her from the bathroom to her bedroom, we pass by Natalie's room and I hear that distinctive sound.  The one I know all too well.  The last three times I heard it, we found ourselves in the ER.  By the time I got Hannah tucked in to her bed and back to Natalie's room, Nat was in a full-on scream/cry/can't-catch-my-breath mode.  I calmly removed her from her crib and rocked with her for a few mins; just enough time to get her to calm down, so I could re-assess her and come up with a game plan.  Natalie continued to struggle with her breaths (stridor) so carried her to our room and let her sit with Ben so I could pull on something that did not resemble pajamas for our first trip to the ER...our 1st trip for the year 2013, that is.  Me sporting an ensemble that was a cross between running (upper body), yoga (lower body), a trip to the beach (my feet) and post-massage (my hair)...Natalie and I hit the open road, cruising at a comfortable speed up I-95.  I have to admit, it really was serene that time of the day.  It was us, three tractor trailers and a ford escape for the entire ride to AI.  However, this trip felt like it took an eternity!!!!  I guess with a little one in the back seat retracting with every breath, it can kinda add to the stress.  Don't worry...there was no need to call an ambulance.  Croup is typical.  She wasn't in severe distress and at no point was she lacking oxygen.  Everything was under control!   We arrive at the hospital and naturally all the front row parking spots are spoken for.  Despite my desire to plow into one of the smaller cars, Despicable Me style, I realized I was in my car and not Ben's tank...


  
   Alas, we settled for a parking spot at the top of the hill.  Nothing about this experience stood out from the previous three Croup ER visits.  Go in,  confirm that Natalie is my child (one of these day's I'm gonna be in good spirits and with a straight face say "Oh Shit!  This isn't my kid, I must have left her in the car.  Here, take this one, find her parents...I'll be back with my actual kid!"...like I said, one of these days.), get our ID bands, go through the Triage rig-a-ma-role, be escorted to a room (that has enough fluorescent lighting to comfortably light up the evening construction on 202), get her hooked up to pulse ox and heart monitors, go through Natalie's history, see a nurse, go through Natalie's history, get her some steroids, see a respiratory therapist, go through Natalie's history,  get her some racemic epi, see another doctor, go through Natalie's history...I'll spare you the remaining events as you get the gist...eventually this leads us to discharge! 
     We arrive home just in time for the sun to start peaking his/her-self over the horizon.  I meanly think to myself 'are you flipping serious?  The state of DE hasn't seen your ass in at least 72 hours and you choose TODAY to be all sparkles and happiness?!?  You know what, you have to be a woman, cause you're total bitch!'.  Anywho- as Natalie and I are ascending the steps to our home, my Uncle Gary who lives across the street is descending his, headed to his truck to start his work day.  We politely wave and refrain from yelling, seeing as the rest of the neighborhood is quiet.  Natalie and I get inside and she's all hopped up from the drugs she's just ingested and she's acting like a total drunk...yelling down the hallway trying to wake her dad, dogs and sister...remind me to apologize to Ben for all the times I've been an annoying drunk, yelling when I was supposed to be quiet!  Natalie and I text Uncle Gary, wishing him a happy day and to drive safely (he drives & assembles cranes for Maxim) today.  He inquired about our late (or early- depending on how you look at it) arrival into the neighborhood; I explained our night of clubbing in North Wilmington and how Natalie was taking whatever drugs were passed her way from the MD's! hahaha.  Even after a wild night, she settled nicely into her crib after some snuggles, songs and sips of milk.  It was now time for me to crawl into bed for another quick nap!
    When I awoke 2 hours later, Ben & Hannah were in full swing and departing for school and work.  It was only a matter of time till Natalie and I had to leave for her 2 morning appt's at AI.  I'm not kidding, when I walked her out to the garage it barely felt like 4hours had passed!  But we trudged on anyway and she barely had any fight in her to do her usual pissing and moaning about me locking her into her carseat.  I hop in my seat and go to fire up the car....it won't start; all I get is clicking...DEAD BATTERY!!  Natalie's sleep deprived mommy left the interior lights on in the car after snapping this lovely picture....

Happy to be home...well, in the garage!

   I panic and do a quick brainstorming session while Natalie is grunting and signing her little hands off for her Elmo DVD.  I think, Oh I can:
   ~Take my mom's car to our appts...Nope!  She has to have a working car because she is picking Hannah up from school since we will be at AI.
   ~Have my mom drive us over to UD and pick up Ben's truck.  Shit, that won't work either...we only have Hannah's carseat installed.
    ~Hmmm....I could steal, Holli's,  my out-of-commision neighbors car!  No, that would require I take a carseat out of my car and install in hers...that would take too long.
   ~OH!  YES!   I will jump start my car and pray that our drive up 202 is enough to juice up the battery and I won't be stranded.

Isn't it sad, when in a moment of panic I forget how to jumpstart my car??  Hahaha!  I had to call Ben to guide me through it; for fear that I was going to blow myself through the wall of the garage!!  I get the car fired up and we high-tail it up 95 to my eye doctors appt and we arrive there the only we know how...15mins late!  
   After a fun 30min wait in the world's smallest waiting room we and a fitting for my new glasses, Natalie and I head back out to the car, which surprisingly fires right up :)  We get all the way over to AI and I realize that I have been doing all of my running since 1:40 this morning on an empty tank.  If valet parks this beast on a hill, for sure there's not enough gas to get her started, so we turn around and fill up at the nearest gas station.  On our return drive to AI, I remember my uncle informing me that he was delivering a crane to the construction site today.  I drive Natalie around the grounds as we look for his big rig and would you believe...we found his truck and HIM!  He was just waiting for the construction team to finish up their work so he could begin his.  We call him Unkie Gary because that's what Hannah used to call him.  It's adorable and he is now stuck with that title.  As soon as he saw my car he hopped out of his truck in a flash and was at my door before I was even in park.  When we opened Natalie's door and she caught her first glimpse of her favorite Uncle....she LIT UP!  It was the first time I had seen her happy today!!  That melted my heart and it was at that point I wanted to abduct my Uncle and take him with us to her appt with Dr. Martin!  I totally should have because Natalie was in rare form.  She was clearly tired of being poked & prodded and we were both fed up with spending time within the walls of AI.  And I had even saved us additional time there by canceling her morning speech session!  Thank goodness I did...there's no way she could've handled three appts that morning! 

Want to know the most insane part of this day?  I attended the Down Syndrome Association of DE's parent meeting tonight....At A.I.!!!!  Mwahahahaha!!!!!