The parking lot was full of cars that made no noise as they sit, empty. The familiar sounds of the big city lay somewhere in the distance, barley audible yet crept into our ears, lightly tapping our eardrums. It provided a background for the emptiness that careened across our awareness of reality.
Ella was placed gently into her car seat, a smile ran across her face as she looked at us. We both stroked her cheek with the backs of our finger, tilted our head a bit as we gazed at her, and took in a deep sigh. I stepped back as Lindsay closed the door and we made our way into the car; finding the familiar yet oddly strange places we have occupied for years.
The slam of the doors ushered in the silence that waited for us in the car. The background noise that was the hum of the city disappeared behind the glass and metal of our Honda Odyssey. We stared off into the distance that offered us a glimpse of the evening sky of Chicago; our minds beginning their own journey that would prove to be the ride of our lives.
Our eyes, fixated on nothing in particular found their way to each others and not a word was spoken. Tears seemed like the only option yet they too lay silent in their shock. The only sound that penetrated the silence was that of Ella cooing.
The overcast silence was broken by the five words we'll never forget. "Now what do we do?"
When we knew, after Ella's EMG, that she had Spinal Muscular Atrophy, we knew what that meant. We knew all to well. Since that time our lives have changed dramatically.
SMA has not only robbed Ella of her ability to control her muscles and all that goes with that it now attempts to rob us of our identity.
The struggle we face besides the physical, emotional, and spiritual struggle is that of who we now are. How are we defined as individuals, a couple, a family?
We are fast growing concerned with how SMA has attempted identity theft on our family. It has become a challenge for us and everyone we know to figure out how to approach the social impact a terminal disease housed in a child's body.
There is no doubt that SMA takes a front row seat in our daily lives. It interrupts almost every moment that we experience. It cannot even be said that it affects us from morning to night, for it also affects us throughout the night. It has barged its way into our lives and threatens to take over.
We are not going to allow SMA to define us. We cannot. We will not.
Lindsay is a loving, open, cheerful person who looks at the bright side of life. She has always been one to find the good in people, take a genuine interest in their lives, and has a love for laughter.
SMA will never take these attributes away from her.
Ava is a beautiful, intelligent, sensitive flower that has found that her compassion has a place in our family. She has found herself battling the affects of SMA and turns to us daily to guide her through her anger, jealousy and misunderstanding of SMA.
Henry is a vibrant, energetic boy who has a side that offers love, kindness, and tolerance. He has had a rough start to his life facing some medical issues of his own and as of late has been seeking his position in the family. He seeks to be fun, helpful, in control, and silly. Often times he hits the mark.
Ella is a tender soul that boasts a toughness not often found. She takes what life has given to her with grace, dignity, strength, and pride. We shall learn much from her.
As for myself, I am a person who cares deeply about the ones I love. I have walked through my life gathering experiences that have given me an exterior that can only be penetrated when I so desire it to be. I give myself wholly to my family for they are all I have.
We find ourselves redefining ourselves. It must be a definition that includes all that we are and were meant to be. It must include all of it.
In the midsummer heat of July, 2011 SMA threatened our lives for the first time. It penetrated rudely into our whole fabric of who we are and who we want to be. It continues to barrage us with its insidious yet unmistakable havoc.
We will not
we cannot
be defined by it.
