I am human. I don’t always make the right choices or use the appropriate emotions in any given situation, and often I don’t think before I speak. Not everyone likes me. In fact, I have been told some people are afraid to upset me. Maybe it is because there is no stone I will leave unturned if I feel anyone I love has been treated unjustly? Or maybe I am just medical mama crazy? (Is that a thing? Let’s make it a thing).

I like to think I have the ability to know when people are being deceptive. I call people on their bullshit, hold them accountable, and when I can’t get an answer I search until I can find one. I use all the resources I have and will call in any favors if necessary. My most recent problem has become that my questions are becoming more complex, and finding the right person to get me the answers that I seek is like finding a needle in a haystack.

Over the last few weeks, there have been some questionable behaviors from people very close to Ella’s care. I am not here to say for certain that their actions are unjustified, but in my quest to find out I have hit more roadblocks than I could have ever imagined.

When I tell you I have reached out to over twenty people via email or phone, I am not lying. Of those twenty people, multiple never even called me back and of those who did at least half of them told me, after I shared my story and asked specific questions, that the system is broken. They seem to think that those four words could somehow make what happened okay. That I would accept that as a reason and let it go. It has only fueled my fire.

While I understand that we are incredibly lucky in New York State to get all that we do to support us in caring for Ella, there are still areas of deficiency. The process to get our children what they need is extremely frustrating, and the wait times on medical equipment and approvals are insane. I consider myself fairly intelligent and oftentimes am so overwhelmed that I want to give up. If it wasn’t for me asking a thousand questions I wouldn’t even know half of what is available. It makes me sad thinking about all those children who are under-served because their families have no idea what is available to them.

All that being said, my constant questioning and need to hold people accountable has cost us. While it makes me sad for Ella, I don’t regret speaking up. What I do regret is not knowing enough to get ahead of it. With each day I learn more and with each bit of knowledge, I become more powerful. Watch out world. Here I come.

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