Tuesday, October 4, 2011

A Night for Writing

So I just penned "Miles's Story" to help support CDR.  I'll posting it below.  We are hoping it gets added to their website; this is an organization very near and dear to our hearts.  Read it and let me know what you think:


Miles’s Story

            From the moment he arrived, Miles has been a constant life force, a source of inspiration, and giver of true love in our family.  He spent the first two months of his life in the quiet comfort of status quo.  From delivery through several doctor’s appointments, Miles was the picture of health.  He was never fussy, always ready for snuggles, and was responding positively to our presence; basically, the arrival of our first child was typical and predictable.  All except for a slight snag, Miles had not developed a “social smile” by his two-month check-up.  It was at this time our pediatrician first mentioned the possible need for genetic testing, as a precautionary measure.  I remember leaving that appointment literally shaking; my world, my precious son, may not be as healthy as we first imagined.  Following the lab procedure, our family spent a breathless weekend anxiously awaiting the results.  During this time, my first Mother’s Day passed.  While we all put on brave faces to celebrate the special occasion, my heart was breaking inside as our son’s fate waited to be revealed. 

            By the time we learned of Miles’s condition, a translocation form of Down syndrome, we had prepared ourselves for the news.  Oddly enough, hearing the news was such a drastic relief for us.  We could now breath, collect ourselves, and seek out the best possible resources for our beautiful son.  Within the week of learning about Miles’s condition, I had contacted Child Development Resources.  Their response was immediate, as was their compassion for my family. 

            To be honest, the period of initial evaluation and IFSP development is a bit of a blur.  Not only were we coping with Miles’s recent diagnosis, we also learned very quickly that he had a profound congenital heart defect.  He was quickly scheduled for open-heart by-pass surgery.  Prior to that procedure, we were able to have a few sessions with Robin, Miles’s case manager and OT from CDR. We used that time to discuss what post-op accommodations would be needed, and, more importantly, we began to build the foundation for a wonderful partnership. 

            Miles sailed through the surgery like a true champion; he was much stronger and braver than the rest of us.  Following a few weeks of recovery, Miles resumed his work with Robin.  She was both an excellent therapist and an instructor, showing us how to best encourage Miles’s development and to reinforce her efforts.  In Miles, Robin saw and fostered his awaiting potential.  Over the next year, Wilda joined our team as Miles’s speech therapist.  Her patience and persistence was evident from day one.  Robin and Wilda will always be very important people in Miles’s life; their dedication and support are the driving force behind Miles’s current successes. 

            In addition to receiving direct services, Miles also attended a weekly CDR playgroup.  From hiding out in the ball pit to racing around the playground on splash days, Miles had many great friends (children and staff alike) during those visits.  We also made some great friends, too.  Watching him explore and develop in a truly supportive and nurturing environment was a gift for us.  Furthermore, CDR did an amazing job providing transitional supports for our family as Miles made the move from in-home services to attending a special education program in the public school setting.  While the transition workshop for parents was very helpful, watching Miles ride the CDR bus in preparation for the public school bus was the highlight of that time.  To this day, Miles’s favorite part of his school day is riding the bus, a fact we solely attribute to CDR.

            Time seems to be racing by now.  Miles has just entered his second year in the public school setting.  Not only is he getting bigger by the day, he is now a big brother.    His vocabulary is exploding, just as his command of his environment.  And rest assured dear friends at CDR, he is still blowing kisses.

            Aside from all of the support Miles received, I will always be indebted to the personal care that came my way.  Prior to Miles’s birth, I began my work as a special education teacher for the county.  All of my classes and training had only prepared me to be a teacher, not a parent.  Robin, Wilda, and countless of other CDR staffers helped me make the leap from professional to parent by entertaining my thousands of questions and providing gentle and continual encouragement.  Your support has helped me become the parent I am today.  Thank you from the bottom of my heart.      

1 comment:

MK's Mom said...

Excellent! I'm sure it will be published in many places! Your knowledge, compassion and love for Miles shines through in every word!