Proud

I've officially entered the world of special needs.  The process is amazingly streamlined now.  While still in the NICU, we met with a social worker who referred us to First Steps (for those that aren't familiar with this program, it is Missouri’s Early Intervention system for infants and toddlers, birth to age 3, who have delayed development or diagnosed conditions that are associated with developmental disabilities.)  A diagnosis of Down syndrome automatically qualifies Reese for this program & we're not wasting any time. We've already had 2 visits from the coordinator to identify expectations/goals for the next 6 months & our first Occupational Therapy session last week.  For now, Reese will work with an OT twice a month & we will add Physical Therapy & Speech Therapy services when she's ready.  Between visits, Reese is subjected to daily workouts led by her parents (okay, led by me - Ben is more into snuggling & gazing at his new baby girl).

The above is just a preface to the real point of this entry.  I'm sure reading about Reese's therapy schedule is about as exciting as watching KU play football this year (he he...go Tigers!).  While setting goals for Reese's therapy, I was instructed to fill out a questionnaire.  One of the questions was, "what makes you most proud of Reese?".  At first I thought this was an odd question.  She was 4 weeks old at that time & her hours consisted of sleeping, eating, pooping & more sleeping.  Which of those activities made me most proud?  Seriously?  I thought of skipping that question & then it hit me...it hit me like a ton of bricks.  It hit me in such a way that my heart burst & the tears poured from my eyes.  I'm proud of Reese because she's a FIGHTER!!

From conception, Reese has been blessed with an extra copy of her 21st chromosome.  She was given the task of creating an entire little body with extra genetic material that is often not compatible with life.  Because of this extra chromosome, her heart didn't fully develop & she's been surviving, even thriving, with essentially a big hole in the center of her heart. 

She has low muscle tone that will delay her development & cause her to reach milestones at a slower pace.  But look what she does already...

I'm not in denial.  I realize she will face many challenges but every ounce of my being knows she will reach her full potential.  She has a family that loves her unconditionally, a big sister who is already a fierce protector, an incredible local Down syndrome guild that will surely be an invaluable resource to us in the upcoming years.  But most importantly, she has grit.  She has moxie.  She's a fighter!

Fighting her way out of the NICU...

into the arms of her pumpkin-lovin' family