I sat down next to Ella. She was on the couch, wedged in the corner for support, unable to really move from the spot. We talked a bit, my iPad on my lap. We played a game together (Angry Birds). My mail program "dinged" and I received a message from www.curesma.org. The article was about the current clinical trials that are moving forward these days. In a nutshell they have made wonderful progress with the intravenous injections of the gene therapy approach! They are looking forward enthusiastically to the CFS (cerebral-spinal-fluid) injection approach...which has great potential.
This isn't really new news in our house. The SMA Community looks eagerly to the folks heading up this research, our fingers crossed, prayer lifted, and hopes ignited.
This hope...ignited by this research...is what keeps us going day in and day out. We look to the promise of a horizon void of SMA; a sunrise of the day when this disease no longer robs our child of movement, function, and health. We look to the prospect that she will know what it feels like to walk, unassisted. We look to the time, that often seems elusive, when we can look at SMA as a memory.
Along with this hope comes despair. Ella has come to realize some of the consequences of having SMA. Namely that her life is so different from most people's. Her daily routine is so different. It's taking a toll on her. She's expressing her feelings, rightfully so and encouraged by us. She is sad, curious, and angry...sometimes all at the same time. Moments unannounced capture our attention as she speaks her mind willfully about how she hates SMA. Questions of "why" circling our conversations as of late...answers elude.
Not only does SMA consume her motor neurons, methodically, intentionally, and without ceasing; it also consumes every aspect of our lives. Each decision we make has been weighted one way or another by SMA. Feelings get tied within its grasp, emotions get smothered in its clutches, peace of mind is obliterated by its insidious presence. The void that was left after her diagnosis seemingly grows, enveloping my life perspective...taking me farther away from what seems "normal"; thrusting upon me a repetitive ache that resides deep within...unnamed, unseen, yet felt full force.
This juncture, of hope for a cure right at our fingertips and the daily maniacal routines that SMA demands, weighs heavily. A juncture of unending promise not yet realized; of conversations not meant to be had with children, of watching a child--meek and fragile--fight the ravages of a relentless disease. This juncture, I know, will be passed and fill my past. Until then I can only hope, pray, and speak the truth to my kids about Spinal Muscular Atrophy.
This isn't really new news in our house. The SMA Community looks eagerly to the folks heading up this research, our fingers crossed, prayer lifted, and hopes ignited.
This hope...ignited by this research...is what keeps us going day in and day out. We look to the promise of a horizon void of SMA; a sunrise of the day when this disease no longer robs our child of movement, function, and health. We look to the prospect that she will know what it feels like to walk, unassisted. We look to the time, that often seems elusive, when we can look at SMA as a memory.
Along with this hope comes despair. Ella has come to realize some of the consequences of having SMA. Namely that her life is so different from most people's. Her daily routine is so different. It's taking a toll on her. She's expressing her feelings, rightfully so and encouraged by us. She is sad, curious, and angry...sometimes all at the same time. Moments unannounced capture our attention as she speaks her mind willfully about how she hates SMA. Questions of "why" circling our conversations as of late...answers elude.
Not only does SMA consume her motor neurons, methodically, intentionally, and without ceasing; it also consumes every aspect of our lives. Each decision we make has been weighted one way or another by SMA. Feelings get tied within its grasp, emotions get smothered in its clutches, peace of mind is obliterated by its insidious presence. The void that was left after her diagnosis seemingly grows, enveloping my life perspective...taking me farther away from what seems "normal"; thrusting upon me a repetitive ache that resides deep within...unnamed, unseen, yet felt full force.
This juncture, of hope for a cure right at our fingertips and the daily maniacal routines that SMA demands, weighs heavily. A juncture of unending promise not yet realized; of conversations not meant to be had with children, of watching a child--meek and fragile--fight the ravages of a relentless disease. This juncture, I know, will be passed and fill my past. Until then I can only hope, pray, and speak the truth to my kids about Spinal Muscular Atrophy.
