I am in one of my negative phases of being a special needs mom. I am sad that my child is constantly in pain and suffering, I am angry because it is my child this happened to. I know there are others in the same boat and I know you get it. I know this is just par for the course and that I am not experiencing anything ultra special, but I HATE IT. I hate that I cannot just be living a regular mundane boring life where my biggest concern is how many hours my children will spend in after school activities. I miss the days of normalcy we once had and I miss that I cannot even think of one of those "huge issues" I used to think was huge because now it has become insignificant. I miss the days where a decision did not directly relate to Sonzee's quality or length of life.
It breaks my heart that a cold/virus that a typical resilient child bounces back from overnight will take my little girl approximately 6 weeks to get back to her baseline. I hate that waiting that long does not grant guarantees. I am so angry she has to suffer all the time. There is nothing that is easy for her, nothing that comes free. After we meet with a specialist, she is sent home with eight lines of home care instructions where three are for pain medications, three are to try to determine the cause, and two are simply to keep doing what we are doing with her.
It is absolutely draining as a parent to constantly feel like you failure because you cannot make things right, there is no way to fix any of this. There is no doctor that has an answer, there is no child with CDKL5 who has been given a cure, and there is NOTHING that we can do but treat whatever issue arises with our best hand of cards...and pray it is enough.
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