If you have seen me in the halls at work or somewhere else recently and asked "how are you doing?" I am sure you got a speechless, somewhat confused look from me. It is hard to know what to say, how to answer such a difficult question. There really aren't any words that seem to come out right. That can express the depth of the pain inside. I often cry in silence, tears spill from my eyes without notice, confusing those around me or forcing me to hide them behind a fake smile, a turn of the head so the person I am trying to talk to won't notice, or a polite "excuse me". It doesn't seem possible that our lives are so different than just 9 months ago... I yearn to hold my son.
I have something on my horizon that I am prayerfully looking forward to, so if you are the praying kind, please pray that this glimmer of hopefulness comes true for me. I am patiently waiting for my future to unfold however it may... For someone who has struggled a lot about "planning" anything right now, please know it has been very hard for me to look ahead. It is hard for me at times to think about what tomorrow holds. It has been hard for me to write too, because the words just don't seem to be enough...
Thank you for everyone's reminding thoughts that they are always thinking of our family and Ryan. I never have doubted that. What is hard though, is those who don't know Ryan and who don't know what our family has been through. It seems so huge in my life that everyone I meet should know too, but they don't. It is a reality that my troubles are mine and that others have their own that feel like the entire world to them. It has been hard to know of others experiencing difficult situations, similar to our own. I can barely hold it together and when I learn of yet another tragic story, it seems too much. I think this is why I have not gone to any therapy yet... or why I was dreading the MDA SMA Trivia Night last weekend. I was afraid of seeing all of the families stuggling to overcome this horrible disease and then breaking down in tears on an evening that was supposed to be fun. I hate SMA. I hate what it did to our son. I hate that we had to watch him suffer as it stole his last breath. As tears roll down my face, it exemplifies why we have to keep fighting this disease together. Please, seek out the MDA and any fundraisers that they do, especially for SMA. We need to fight for Ryan to end this disease. So one more mother won't be pouring tears over a meaningless blog entry because she isn't playing with her beautiful child instead.