If you've known me most of my life, you'd know that I've spent WAY too much time worrying about what people think of me. I've spent my whole life trying to do the right things, with many of those things defined by someone other than myself. As I've gotten older and began recognizing these behaviors and the fears associated with them, I'm seeing that it is no longer serving me in a way that matters. I finally am finding the guts to change it.
Enter Evie. There is something about becoming the mom of a child with T21 that awakens a part of me that I didn't really know how to use, but often mentioned... the advocate.
At first, we listened to what the doctors said and to what the specialists told us. It didn't take long for Rob and I to realize that not everyone involved with Evie saw what we did. They didn't see how capable she was, how hard she worked, how she seemed to know she would be just fine. Over time, we trusted ourselves more and began to push for better.
We stopped accepting the doomsday prophecies that many specialists would spew as if they were reading it directly off of Google. We stopped accepting services that weren't right for her and found what we thought would be more helpful. We have a long road to go because she is almost three, but every time I choose to advocate for her, I care less about what people think.
Recently, I've had to crank things up to eleven and learn how to be my own advocate. I've been dealing with some fairly scary medical stuff lately. Not that the symptoms are fresh off the press, but I finally found a doctor who didn't just wave me off with the classic "eat less and move more" or the oh-so-fun "go to therapy" routine. Nope, I found one who actually took the time to play detective, dive into my full history, and run tests that would make any general doc's head spin. This has also brought some specialists into my life. I've been as jittery as a squirrel in a nut factory about making sure I don't get stuck in a "wait and see" loop, or hear the dreaded "we'll do these tests eventually, but not now" line. I've spent hours fretting over nudging my PCP to hit the referral button now, instead of just riding the wave of a chart review. I was genuinely worried I'd end up on the phone with my primary doc, hear his spiel, and then completely blank on what I wanted. No, what I needed.
Evie is thriving these days. Last year marked the first time since her birth that I felt I could truly breathe. She's healthy, she's growing, and she's happy. While the future holds no guarantees, one thing is certain: I need to be present for it. I must be here for her, for Ben, and for Rob. I am committed to advocating for my kids, ensuring they receive the care they deserve, and not allowing my own hesitations to prevent me from demanding better. Other people's opinions pale in comparison to my children's health and wellness. And guess what... I am letting myself apply this mindset to me as well!
Can't help but think that there are multiple forces at work to push me. Never stop learning and growing!
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