Lately I have been really struggling with my beliefs and the concept of hope in general. I do my very best to try and be optimistic but the "real me" is more of a realist, which tends to come across as "Debbie downer". I can own that about myself, and honestly, I do not feel like I am in a place to jump ship on the "perceived negativity" at this current juncture, because it is safer for me to be closer to the bottom. When I find myself in one of these lull periods, it is as if I am more receptive to the shimmer of hope that might actually exist.
In the middle of the night between Monday and Tuesday morning I had what will always remain one of the top 5 moments between Sonzee and myself. As I went to start her back on her 20 hours of continuous intestinal feeds I turned my phone flashlight on and caught a smirking faced Sonzee looking over at me. My immediate reaction was a huge smile and of course to begin recording this magic moment. I honestly do not remember the last time I have felt her portray such giddiness and happiness outwardly, not to mention an actual "dialogue", my heart was literally exploding. It was near one minute and 45 seconds where my 3-year-old acted like a 3-year-old. One minute and 45 seconds so genuinely appreciated and not taken for granted that even typing this brings tears to my eyes.
Many minutes, hours, and days spent with Sonzee are surrounded by question marks. Is she happy? What is she saying? Does she understand? How can we help her? Is she in pain? Why are the simple things in life so challenging for her? Those are just preliminary; my list is far more lengthy and complex. I often feel like I am drowning with hefty decision making and uncertain repercussions. Then randomly out of nowhere I am truly given a gift from G-d, as if he knows this is exactly what I am needing. This one minute and 45 seconds was chicken soup for my soul and will certainly keep me company as we continue through this next phase of uncertainty along this special needs journey.
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