Well it's sometime between 2:30 and 3:00 am and I am wide awake, a hazard of being a grieving parent. So I thought enough with these scientific definitions of SMA. Instead I thought that I would share with you what Spinal Muscular Atrophy has meant to our family.
SMA has meant looking our baby girl in the eyes and watching all dreams of a future with her fade. It has meant making heart wrenching decisions regarding her care and disregarding what medical experts often had to say. SMA meant sleeping with one eye open or not at all. It meant watching oxygen stats and heart rates while holding our own breath and feeling like our own hearts were about to burst out of our chests. SMA meant holding our darling girl and wondering if she would live to see another day. It meant anger, worry and constant anxiety.
SMA meant holding her and remaining calm even as I knew that she was taking her last breath. It meant wrapping her in a blanket and walking her out to waiting strangers to take her little body away. It then meant learning to live with every decision we had ever made about her care.
For Georgia it meant struggling for every breath and being poked and prodded by strangers. It meant staying in a strange and noisy place for 17 days. In the end it meant laying her in a fluffy pink casket because what else do you pick for a baby girl?
For Calla and Maya it has meant saying good bye to a baby sister. It has meant watching their parents fall to their knees and weep on more than one occasion. It has also meant weeping alongside of their parents for reasons that they probably have never quite understood.
For Mike and I as parents it has meant answering questions like,"Why do they get to keep their baby and we don't?, and "Did Georgie do something wrong?" It has meant learning to answer these questions patiently instead of screaming, "I don't know!" and, "No!"
For Mike and I as husband and wife it has meant grieving in separate corners and fighting against the tide of grief to find our way back to each other. It has meant fully acknowledging a %90 divorce rate and saying, "NO. Not an option."
SMA still means hearing your spouse cry in the middle of the night and having no words of comfort to offer. It also means waking up in the middle of the night crying because the hole in your chest is aching so terribly.
SMA is so ugly and yet what is so ironic is that it's victims are hauntingly beautiful. Most of them can tell you more with their eyes than we can with vocabularies of thousands.
This is the hand that fate has dealt my family. This is my SMA reality. Mine won't change but you may be able to help save somebody else. This is the last time that I will ask. Please vote today and please, please, please, ask others to do the same.
Off to bed now,
Love to you all,
8 Years an Angel
2 weeks ago