Friday, March 23, 2012

Flashback Friday

A Moment of Typical
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:

Unexpected Blessing

Written By:
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.

At first glance, the suit seemed bigger than life. It was everything you imagined the Easter Bunny would look like in the mind of a child. The suit was soft and smooth to the touch. The animated eyes and inviting smile tinted upon the rabbit's face were visions of my childhood past. The large blue eyes danced with a childlike mischief, and the smile; the smile opened the door to the majesty of colorful bespeckeled eggs hidden in tall wheat grass and decadent milk chocolate bunnies placed gently in the chubby hand of a cherubic three-year old tasting the sweet milk of childhood for the first time. The giggles that emanated from passerby both young and old made me laugh aloud. It was a chance to escape the harsh reality of the world in which I lived. In that moment in time, all was magical, sweet, and innocent. Fun, fun is what I remember feeling, and gratefulness.
It was my third day "in the suit". I was the lone female rabbit and shared this coveted duty with Ron. We worked opposite shifts and the mall employees learned to distinguish us by my perfume. I hope that I smelled better than Ron did. One afternoon, I was sitting on my very distinguished looking throne taking a water break when I saw a woman approaching me very timidly. The photographer working with me asked the woman if we could help her and if she was here to see the Easter Bunny. The woman quietly asked to speak only to with the person working inside the bunny suit. My photographer asked me if I would speak with the woman and I said of course.
She walked up to me in halting steps and her eyes were brimming over with tears. I remember being taken aback because I could not see what had upset her so. She leaned in to me and asked in a still soft voice if I minded if she brought her son over to have his picture taken with me. I of course answered, "Sure. No problem." However, she just stood there staring at me through the small holes that had been veiled to allow me to see my surroundings better. Large giant tears spilled over onto her cheeks and she thanked me profoundly. Still confused I told her that I did not understand why she asked my permission to have a picture taken. I mean, after all, that is what I was hired to do. Then I saw him. Aaron, blonde headed, beautiful blue eyed Aaron.
Until the birth of my youngest son, I had never seen clearer and more beautiful blue eyes. They were comparable to a full moon spilling its loveliness onto a clear lake of peace and serenity. Aaron was not what society would call your "average" little boy. Aaron, all three years of him, sat propped upright in his wheelchair. This wheelchair was his lifeblood when he was away from his home. Its functions were varied and multifaceted. Not only did it seat his frail slight body, but it also carried the ventilator and the suction machine that Aaron needed to stay alive if he traveled outside the safe cocoon of his home.
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.
And so, it was with great care to be as gentle as possible that this beautiful mother lifted this blessed angel from the shackles of what he had come to know as his normal, his wheelchair, and sat him sweetly upon my lap. The tubes were strategically hidden and on that day, memories were solidified forever on a piece of paper that would transform itself into a form of gold to Aaron's mother. This was after all his first picture with the Easter Bunny.
Once the picture taking was finished Aaron's mother reached for him to place Aaron back into his wheelchair. I held up my hand to halt her progress. I just wanted to hold him and wish away all of his pain and his fears. Aaron had this beautiful head of light blonde hair. It glistened in the glow of his surroundings. It seemed to bathe him in a gleaming light of innocence and protection. In reality, it could have been a halo. I do indeed believe that I was in the presence of one of God's precious angels. 

As I held him, I sobbed for him and for all the tomorrows, I thought he would miss. I cried for his life that in moments was overwhelmed and held captive by pain and the unknown reality of his tomorrows. I cried for myself, for Aaron touched me so deeply that his face is forever burned upon my memory.
Aaron, my beautiful little guardian angel, peace be with you and thank you for blessing my life. My prayer for you has always been that your tomorrows are full of merriment and vibrant dreams that become your actuality. Thank you for changing my life and making me more aware, more patient, kinder and more grateful for everything that God has blessed me with; may love and kindness follow you all the days of your life. My love goes out to you, wherever you are Aaron. Please know that you made this world a better place to live in.

So now, instead of wondering what people think of my son after an encounter and discussion... I hope they think of him often and remember that there is hope in this world and there is never a reason to not believe in miracles. Even if an obstacle leads to tragedy in the end, ultimately that tragedy has created some good...

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