I know what I say.
I tell myself that there's a reason for everything. I repeat in my mind that we must go forward.
Now, however, my thoughts feel cold and my spirit erased. There's no other way to describe it.
I know what I say...and I understand that this, too, shall pass. Yet for the moment, in the moment, a stifling numbness takes over. A lack of control builds up inside. A realization that while we're not any worse off, we're still looking for the light.
It seemed as though the light glimmered on our lives. In a way, I suppose it did. That twinkling of hope held an eternity of promises. It mesmerized us; sang to us; brought us to it.
Ella had an opportunity to be part of a clinical trial for an extremely promising medication that may hold a treatment for SMA. The drug is called SMNRx and its function is to direct the back-up genes (that many people with SMA have) to produce full functioning SMN proteins (as currently the back-up genes only produce about 10% of functional SMN proteins). It has been quite successful up to this point in many animal and human cases. It's widely known in the SMA Community and holds us all eagerly on the edge of our collective seat as we all wait and watch.
Ella's doctors and therapists felt she was an absolutely wonderful candidate for the trial...we did too. With that in mind we spent many hours at Lurie's Children's Hospital partaking in the screening process. She did wonderfully. One of the exclusion criteria has to do with the degree of scoliosis present...Ella's degree of spinal curvature was a smidge higher that the sponsor wanted yet they still had us engage in further screening criteria. They also asked for an opinion from her orthopedic doctor and another x-ray. Her orthopedic doctor gave her the "go ahead" to participate and even produced an x-ray that showed not only a lesser degree of curvature, but spinal flexibility as well.
Not good enough.
When we received the call that Ella was not accepted the frigid weather outside seemingly tore through our souls. While we prepared for this outcome the reality of it whipped us back to the time when we first received her diagnosis. It's a feeling that simultaneously presses hard into you and pulls you apart. It leads you to a place that is better left unattended. It strips you of knowing that everything will be all right...somehow; some way; some time.
We never told Ella why we were going to Lurie's all those times during the screening. We felt it best not to place expectations in her head...and at the same time we tried not have any in ours. It's tough, though. She's our little girl. She's our Squishy. She's ours. And we want only the very best for her as she travels through her fragile life dealing daily with SMA.
We seek earnestly for the trial to go well with those enrolled so that all may someday partake in the healing medicine science will hopefully...one day...offer.
I know what I say to myself and I do believe it...
...there is a reason for everything...whether I can see that reason through my own clouds or not.
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| Ella Sabine Casten February, 2015 |
