Tonight after having a chance to begin digesting what is ahead, I feel tired. I ache from head to toe and feel the tension of the past 3 1/2 weeks in each muscle of my body. I have this yearning to know all there is to know about SMA type 1 because if I don't then I am afraid I will miss an opportunity to help Ryan, and nothing seems more important than that right now. But, at the same time, I cannot spend hours upon hours in front of a computer, reading the same dismal statistics. It is more important for me to be a mother to my children and to spend quality time with them and my husband, to use this precious time we have been given to make memories. Dr. Connolly has a specialized degree in neuro muscular disease for a reason and there is a big part of me that wants to leave that part up to her. I have read more times than I want to count that "there is no cure" and I am tired of reading it.
I almost don't know what to do with myself. I find that daily routines and chores seem so insiginificant to what is happening, yet it is so important for us to continue to "live" our lives and to go on for Charlotte. As much as I am struggling with this now, I know that it will probably only become harder. This is an "in your face" dose of reality and discovering what is really important in life. Call me crazy, but I honestly thought I had already learned that lesson... didn't think I needed reminded again how precious life is. But, so many times, we have received emails of people saying how much our story has reminded them to "appreciate what they have". So, maybe it wasn't us that needed the reminder, but others that would learn it through Ryan's story and our willingness to share feelings deep within. I don't really know the answer to this, God is the only one who knows His true intentions. But, I defninitely am guilty of thinking that the challenges we had with Charlotte were devastating and now realize that "the mountain that we were climbing was a grain of sand". But, each time we walked in the doors of Children's Hospital, I was shown that there are others out there with a much more challenging and devastating story than our own. I never realized that our story could take this turn.
As I continue typing, I find myself wanting to wrap up my thoughts and they keep coming. (Quite possibly why I can say "my brain hurts") I have so many thoughts that want to escape that fill my mind and keep me from truly relaxing. Even if I am able to push them out for a short time for a t.v. show or something stupid and mundane, it is almost like the snap back into reality sends them back with double the force and that moment brings on the tears. I know there is so much to come, so many more feelings to feel. I am scared of it all, hoping we find some way to get through this together and to give Ryan all he will need amidst it all. Every ounce of love we have for him, we must pack into this short life he will live. How does a person do that? for their child? There is oh so much spilling over before you even meet them, and now... even more so.