For the past three years we have been faced with making decisions on behalf of Sonzee that have altered her quality of life, and every once and awhile, literally her life. It is the latter that throws me into a constant state of anxiety and panic, that to me, has to be similar to the feeling of drowning. There are bobs back up to the surface for me to take a gulp of fresh air, but then I find myself falling back deeper in the water only to look up at the rippled surface. As I look up I wonder how it is we are back in this position? Didn't we do everything we were supposed to in our best attempt to avoid this situation? How do I get back to the surface?
I am trying to filter out the clutter and confusion in my mind by conducting research and weighing pros and cons. I feel like no matter the decision, it will only buy us a little more time before the next situation presents itself. Nothing seems clear. I hate to say that making these decisions does not seem fair, because it isn't about what is fair, it is about what is best for Sonzee. I find the most challenging part of my job as her mother is removing the distractions of what I want and honing in on what she would want. That in and of itself is suffocating. What if I am completely off the mark? What if I misread my gut? Simply put, what if I am wrong?
You would think that essentially repeating this process over and over again would make us professionals at it. This is where the complexity of medically complex parenting comes into play in a different manner. So many aspects to consider, so many ways to falter, so many ways this could knock down every domino we have tried to stack in her favor. I guess this is when I have to really dig deep and give way to faith, faith in what is meant to be. So as I sit here holding my breath deep under the water, I will do my best to swim to surface to take another breath and keep treading water.
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