I've sat back and watched.
We've sat back and watched. My wife and I.
The world of SMA was turned upside down over the past week or so. The events unfolded quickly, abruptly, and with passion.
Last November (2011) a child was born to this world. Created out of the love shared between her parents and by the grace of God.
This child was born with Spinal Muscular Atrophy. Not the first and certainly not the last child to receive this diagnosis; yet just as precious as every child born since the beginning of time.
Her diagnosis, I'm quite certain, carried with it an emotional upheaval for her family unlike any other event they've ever experienced. Every parent who has received the SMA diagnosis for their child knows the anguish, the deep-in-the-pit-of-your-stomach sickening feeling that comes with it.
Every parent that receives the diagnosis copes with it in their own way; for the complexity of the human spirit calls each of us to be an individual...and in doing so we become the perfect parent for our children.
The parents of this particular child chose a path that many have chosen. Their choice was a private one; based on their own personalities. They reached out to their family and friends in a variety of ways...one being a blog. Not uncommon.
This blog was written from the viewpoint of, what the parents felt, their newborn child had concerning her life and diagnosis. They undoubtedly drew strength from connecting with their child through their imaginations, their words, and their mutual experiences. They exercised their right to 'freedom of speech'. The response to the format design of this particular blog and its message became quite popular. Amidst their emotions surrounding the diagnosis of SMA, the child's parents wanted her to have everything they could possibly provide...through the help of their fellow man. The blog gained international attention almost instantly.
On the morning of May 1, 2012, I received a text from my wife. The child had died unexpectedly.
I read the entry on their blog dated Tuesday, May 1, 2012 as I sat in a room by myself...thinking of the parents of this child, my own daughter, my wife, and the girl herself. I felt like I wanted to cry. I didn't cry. I thought I might break down. I didn't break down. Instead, my mind reached deep into itself as my imagination ran with reality of comprehending the death of a 5-month old baby. My stomach tied itself into knots as thoughts of holding my own daughter's frail hands with my fingers etched its way through my head.
One moment they are here and the next they can be gone.
This is true for anyone...not just people with a terminal illness. Life is ever so fragile.
Since the story of this little girl had made itself international the world has taken on a different look toward Spinal Muscular Atrophy. The world seems to be responding to this disease in a way unlike any other time in history. The world, a collective consciousness comprised of each of us, can effect change...it has been done before in so many instances...for good and for evil.
The people of the world are responding in many ways to the death of this 5-month old child. It sees the innocence that was taken and the purity that was robbed by a disease that knows no ethnic, geographical, gender, or national boundaries.
The response of the world, as time unfolds just after the announcement of her death, is leading many to reach once again for hope. Hope for a chance to further develop treatments, and in the best case scenario, a cure for Spinal Muscular Atrophy.
I believe that each of us is here, on this earth, for a particular reason. There is something that we wanted to do long before we actually got here. For this child, I believe that she wanted to effect a change for those who suffer, who have suffered, and who might suffer under the diagnosis of SMA.
In 5 short months she reached out to her parents who, with open minds and open hearts, followed their instincts, giving her a voice and allowing her particular reason for being here to shine forth.
I've sat and watched.
We've sat and watched as a family coped with a new diagnosis of SMA in the best way that they could. We battle the SMA battle each and every day along with so many others...a seemingly endless fight.
The young girl now sits, in eternal light and peace, watching.
Watching what the world will do with her life...
