by Susan Lowenstein, MSPT
Booker T. Washington, American author, orator, educator, and advisor to many presidents once said, “You measure the size of the accomplishment by the obstacles you have to overcome to reach your goals.”
So, that being said…let me tell you about a little boy I know named Miles. He is a 6 year old that is currently a student of mine at Easterseals of Southeastern PA, Bucks County Division. I have had the pleasure of watching him fight to overcome obstacles for the past 9 months, but he has been fighting an uphill battle for all 72 months of his young life.
OBSTACLE #1: Born 8 weeks early.
OBSTACLE #2: Shared birthday with his twin brother so he was already small for his gestational size.
OBSTACLE #3: Has a mutation on his COL2A1 gene that causes several types of skeletal dysplasia, and his is closest to what is called hypochondrogenesis.
OBSTACLES #4,5,6,7 and 8: Has spinal instability, ongoing joint issues, hearing loss, significant vision issues, and a floppy airway.
OBSTACLE#9: Intubated at birth
OBSTACLE#10: Received a tracheostomy at 3 months of age
OBSTACLE#11: Transferred to the ICU at Nemours DuPont (an hour away from home!)
So… why am I sharing all of this with you? Well, this is just the beginning of Miles’s story. He may have encountered countless obstacles… but he continues face each one head on and works to overcome them.
So…let’s look at all that Miles has ACCOMPLISHED so far in his 6 years of life.
ACCOMPLISHMENT #1: Became strong enough to be supported by a home ventilator and home nursing support to go home, just 6 days shy of his and twin brother George’s 1st birthday!
ACCOMPLISHMENT #2: Learned to taste foods by mouth (even though he needed a g-tube for nutrition) during the first year of his life
ACCOMPLISHMENT #3: Used his hands to gesture and request for food like yogurt and applesauce during his first year of life
ACCOMPLISHMENT #4: Re-learned how to accept some food orally again after cleft palate split at 18 months of age.
ACCOMPLISHMENT #5: Started sprinting (practicing time off the ventilator) when he was around 3 years old. Now he is at the point where he can spend nearly all of his waking hours without the ventilator.
ACCOMPLISHMENT #6: Sat upright in a highly supportive activity chair at 2.5 years old (despite his large head and short arms and trunk)
ACCOMPLISHMENT #7: Sat upright on the floor without any back support while playing with toys and watching the classroom smart board or TV at home at 5 years old
ACCOMPLISHMENT #8: Transitions from lying down into sitting up all by himself at almost 6 years old
And…just in the time that it has taken me to put this blog together…Miles has accomplished yet another 2 more feats!!! He can now pull himself up into a supported standing position at his walker all by himself (that’s #9), and has gotten strong enough to crawl over to a large couch cushion and pull all of his body weight up onto it (that’s #10).
Every accomplishment that Miles has achieved is testimony to his resilience, his amazing family and his team of health care and educational professionals. Together, we continue to imagine what he CAN do, not what he CANNOT do.
When people ask me what I do for a living, I tell them that I am a pediatric PT that works with children with complex physical and medical needs. Frequently, I am asked, “ Doesn’t your work make you sad?” But to the contrary, I find it wondrous to work with children like Miles who are able to overcome obstacles and accomplish so much more than some people may have ever thought would be possible.
Miles, thank you for being such a fighter. We at Easterseals are behind you 100%, and we will continue to watch you hurdle through more obstacles and accomplish so much more accomplish in your future!