Another flashback from Small Portion of a Life's Journey, the original hydranencephaly journey blog. A perfect fit during a season of "thanks"... and the formation of our "bumblebee" mentality for the foundation.
The Can'ts, Won'ts, and other impossibilities...
By Ali Harper
...these are the things that bog me down. But, when I stop to really think about them... how amazing that my 'lil man and his friends, living with hydranencephaly which has ultimately left them without all parts of the brain needed for survival (supposedly, but obviously not entirely true), is defying these odds... without a care in the world, but to be surrounded by the people/things they all love!
Doctors, it's nearly ALWAYS doctors... the medical "professionals" who I always believed were the miracle workers. Little did I know, they don't always believe in miracles... our experience:
~the dr. said, "The chances of him surviving to term are nearly non-existent. I advise you to abort." Yet, 2 1/2 years later, he's well exceeded this "expiration date"
~the dr. said, "He will never breathe, eat, or regulate his own body temperature without the assistance of machines." Yet, not only does he independently breathe every breath of every day while reminding me to be thankful for every one of these breaths, eat with the biggest smile on his face ever (most of the time) relishing every bite, and regulate his own body temperature without that warming machine we were told he'd live in... he's enjoying all of it, clueless to the fact that he shouldn't be since that's what the textbook has told!
~the dr. says, "There is no way that he can see and process what he sees since he is missing his cerebral cortex. And hearing, that is also out of the question." Yet, every single day he amazes me with his responses, his personality, his obvious motivation to do more... vision is motivation, without it you are likely to not try as hard. If my 'lil man cannot see, he should be revered for his ability to fool everyone he meets! And his hearing is impeccable... he has ears like a bat (don't bats hear well? If not, let's just say he can hear a pin drop across a city block!!).
~the dr. says, "Every movement he will ever make will be a reflex, since he doesn't possess the ability to make purposeful movements or the decision-making skills to perform designated tasks." Tell that to his therapists who watch him defy their requests (always doing the opposite of what is asked), with a sly grin and sometimes a chuckle. Tell that to the strangers who lovingly try to hold his hand, while he yanks it away in dismay because he knows he should not "talk to strangers" ha. Watch him quietly for 10 minutes as he tries with all of his might to open his hand and grab his new treasured ball from his vision therapist, or tap his shiny maraca on his light board because he wants either attention or a new sound in the air. Spend a day with him and learn all about his personality and how well he expresses it without uttering a single word. THEN, attempt to tell me he is unable to make purposeful movements or make decisions and take action. Better yet, have at it with him and a bulb syringe when he has a case of the sniffles... or his toothbrush in the mornings to scrub his grubby teeth... you'll see he's full of fight when he gives you a right hook, and you have to nearly sit on him to keep him still!!
~the dr. says, "Your parental wishful thinking is making this all possible, because technically all of these things are medically impossible." And sometimes I almost believe that, until my 'lil man again performs an amazing feat with that glint of determination in his face! He rolls from side to side with his infamous grin across his face, he takes steps when he's ready to go somewhere, he responds to his name with that same infamous grin, he replies with "hi's, hey's & ga's," he loves with all his might and emits more genuine happiness and content than any other little being I have ever known... especially one who is living with this nasty, pessimistic, association of a condition deemed, "incompatible with life," which in turn sparks mounds of debates regarding his own quality of life. Which, might I add, well exceeds most adults who have lived a "typical" life...
~the dr. says, "__(insert negative, yet treatable symptom here)____ is to be expected, considering his condition is terminal so treating will not change his prognosis." But aren't we ALL terminal? Is there an immortal pill I should be adding to my daily dose of supplements, because last I knew we were all destined to die? So we should ALL expect __(the same insertion of negative, yet treatable symptom here)__, right? We should all ignore treatable issues, and just suffer through life with a cold or cough or seizures or dislocated hips or serious fluid build-up in our heads... anything causing grief, pain, and suffering. I mean, we're all going to die... so what's the point? right?
So many amazing things to embrace and be ever so grateful for, more than there is to worry or grieve over... most of all for being blessed with the opportunity to be this little miracles mommy during his time on Earth. For the lessons he is teaching his sisters, his daddy, myself, and every other family, friend, or stranger he himself and/or his story touches... that hope lives on, and there is never a good time to give up on that!! For re-instilling my fading belief in the existence of genuinely good-hearted souls on this planet, and connecting me with them and their ability to turn what started as such tragedy in to a fulfilling life full of the deepest love imaginable. Even for appreciating this opportunity as it is given to me, so as NOT to become one of the ignorant ones I encounter nearly daily with their snide remarks, insensitive comments, and quick-to-judge glances and stares ... every obstacle is a blessing in disguise, regardless the height of the hindrance or difficulty in crossing. Nothing is ever impossible!
...but, probably not exactly word for word, but one of my all-time favs. Maybe since I have my own little bumble "B"rayden, and no one will ever tell him that he shouldn't keep on "flying" anyways!