By Ali Harper, Small Portion of a Life's Journey
March 24, 2010
My own son, living with hydranencephaly... missing most or even all of his cerebral cortex... displayed a very public (not to mention LOUD) moment of "typical". While grocery shopping, he became a bit fussy... normal after our morning physical therapy session, but this day he took it to a whole new level. This came after overhearing a woman and her daughter in the waiting room at therapy discussing a boy who defied medical odds and was now living a relatively "normal" life as an adult... they seemed in awe to this fact, even as their own daughter/sister were there for therapy for some level of developmental delays as an older teen or young adult. They chalked the incredible feat of the man they were reading about in the article as a misdiagnosis, when in fact it was likely nothing shy of a medical miracle. I wish everyone acknowledged small miracles when they witness them... just as I have come to...
Back to Brayden and his "moment of typical". While in the check-out line, he proceeded to throw a fit like I have never seen before. Mind you, I have two older girls whom are both healthy, "typical" children... yet I have still personally never experienced a fit like this from one of my children. Sure, everyone has seen that kid at the store that makes you thankful you're not their parent... kicking and screaming while their parent looks unbelievably embarrassed to be their parent in that moment. I've never been that parent... and even after this fit, I'm still not that parent!!
Not only was he screaming at the top of his lungs, but he was kicking his legs until both of this shoes flew off. When I tried to console him, he would yank his arms away from me and pull his body away too... he didn't want to be consoled, he wanted to throw a fit. And, throw a fit he did!! As I mentioned, I wasn't embarrassed... not even a little bit. Odd, right... I'll get back to that in a moment.
The cashier, and two other smiling lady employees attempted to also console him.... strangers with smiles weren't working for him either. Another mother in line behind us, also leaned over to talk to him about how adorable he was in his glasses. Instead of this calming him at all, he screamed louder... I even began to worry that something was hurting him! But, just as quickly as the fit began, it stopped the second we walked through the door and outside of the grocery store.
About that mention of not being embarrassed... I found myself instead incredibly proud that my son was actually able to throw such an obvious fit as he did. I feel the same when he does the opposite of what we want him to do in obvious rebellion during therapies... or when he acts like he can't do something when we want him to, although everyone knows he can do it!! He possesses his own defiant personality, his own streak of stubbornness... characteristics many parents would find frustrating or less than positive. I, however, LOVE it in him...
I've also blogged here before about how I feel when strangers ask about Brayden. Now it is even more so worrisome since he is nearing two and it is becoming increasingly more obvious that he is developmentally delayed. I'm never really sure what to say to questions asked, but I generally answer honestly and have fortunately found that I appreciate the questions... it's the stares and the whispers that still trip a trigger with me. Brayden has a way of charming everyone who sees him... he definitely gets all the attention everywhere we go... and I just hope that he gleams of hope to them as he does to me.
After my experience yesterday, the following story really got me this morning. I'm always curious if people think again of Brayden after they've met and learned more about him, if he has blessed them with an enlightening moment or assured their curiousness as to the existence of miracles... or better yet, renewed their own sense of hope for a tragic obstacle they may be facing. It's funny how each time there is something weighing heavy on my heart, that I myself encounter another's touching words that seem to ease my own mind. Enjoy:
Julie J. Hunter
His name was Aaron, and I will never forget him. I was 16 years old and trying to hold down two jobs and finish my high school education. I babysat after school and on the weekends. My new job was an unbelievable opportunity. I was going to be the Easter Bunny at my local mall. Yes, you just read the words; I was the Easter Bunny. This opportunity was one of the most interesting jobs that I have ever had in my life. I mean, think about it I was being paid to "bounce"around the mall in a 7-foot fur covered rabbit suit, bringing smiles and giggles to children and adults of every age. Little did I realize that this job, this moment in my youth, would be one of the most rewarding of my life.
I sat there, quietly mesmerized by the beauty of this little boy. His mother rolled him up to me and I placed my fur-covered hand on top of his. With his fragile left hand, he reached for my paw and patted it ever so gently. I sat there and silently sobbed, cloaked in the sanctity of my costume. Giant tears of gratefulness washed down my cheeks. I was blessed to be the one chosen to be in the suit that day. I was the one that Aaron would change forever. I then realized that if it was at all possible, I would hold this child upon my lap and hopefully give him and his mother a memory that would last them all the days of their lives; the memory of Aaron being proudly held by the Easter Bunny.