Our son's prognosis is unknown, but could be very bad. We have no idea what to expect for him in the long run, and will not know that for six more months at the soonest. My mind is in survival mode, not allowing me to think about the possibilities very often, but every now and then the worst pops into my mind. They're triggered by idle thoughts, like wondering what my 9 month old girl's first memories will be, which makes the unbidden thought, "Will she know her brother as she grows up?" comes to mind, sometimes bringing on a near panic attack. It is torturous to not have any idea what kind of outcome to expect for him, or how much of his life he will spend on dialysis due to kidney failure, and it is so hard to hold back those negative thoughts. They keep coming back, over and over, in different ways, and trying to throw them right out before they make me lose it is the best that I can do.
The thought that scares me the most is the possibility of having to explain to our son that he might never be well, or even worse, might never really grow up. That is a possibility that hasn't crossed the lips of any medical professional yet, but words like, "potential kidney failure" and "only one transplant" bring them to mind nevertheless.
Yesterday he was talking to my husband about some of his temper tantrums. My husband asked the hypothetical question, "What about when you're in kindergarten and throw a fit like this for your teacher?" to which our son replied, "Well, I won't be sick then." It was a heartbreaking thing to hear when it has such a slim chance of being true.
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