Wednesday, September 13, 2023

The dilemma

 It's not that I don't want to write about the kids, my experience with the kids, get the release from putting all these crazy emotions on paper.  I know it would be helpful to others, especially those that care about us, have kids with special needs and selfishly, this would also help me, boost me, give me purpose, have goals outside of getting out of bed yet again. Where I am struggling is the feeling that I have to explain "what happened?" Meaning, what happened to the kids. Why are they disabled?  What's wrong with them? Or worse, what did you (me) do to cause it? These are the questions that people want to know and I have no good answer for them, not only that, I don't think they are something that happened "to me" or "for me".  It really has nothing to do with me.  They are human beings that happened, that were born, just like everyone of us that draws a breath.  And yes, they are a gift and a burden-arguably just like every other child. And in the deep recesses of my brain, I worry I caused this, it's my fault. My fault for what? To help create the most genuine, wonderful, kind beings to walk amongst us. Am I so arrogant that I usurped God's creation. It was me, not her? But again, then that goes back to the thought, the fear, that awful part of me, that believes something is inherently wrong with them.  That I want them changed, different, more like your kids?  Do I?  This is the reason I am struggling to explore my deeper feelings and why I just let people see where I am just below the surface, but only there. What if deeper is dark and ugly and ungrateful and wishes that John and Elizabeth were "healthy" and played sports, and got B's,(sorry, what, oh yeah, A's) and went to college? What if I am mean and judgmental and want a new life, a fair life, an easy life? What if I am too tired one day to keep doing this because it will never ever change, only get harder?  What if, what if, what if? So you see, these are topics that are kind of tricky to tackle when you are in the trenches with children/young adults that never grow up. 

Also, I'm struggling with the 'best mom" comments. I am not even close to the most average mom. Please don't comment that I am. I love and protect and care for and change and rinse and repeat and you would do it and don't say you wouldn't.  I don't advocate like some, I don't volunteer like many, I gave this writing thing a go and its been yet another another epic fail.  I am trying to keep everyone alive and get through the days, knowingly, I have zero control even over that. Yes, nice encouraging words feel good, but also I don't believe them to be true so I'm surely a fraud. It's like the "imposter syndrome" I keep reading about.  People think I'm good, but I'm not, and if they knew me, the "real" me, they'd know.  Know what, who knows?  Crazy Mary holds a special and big part of my neurotic brain.  

We say we only want our children to be happy. Well, that's a laughable lie. Because if that were true, I would be content forever. I arguably have the happiest children around, but we all know that just isn't the case. We want them to be accepted by their peers, safe, cute, liked, have a "gift" or a "passion" that will make us and others proud. We know now that they just want to be heard and seen for exactly who they are, but we are so wrapped up in what we think we want for them, we can't see the forrest for the trees.  Is that the analogy? I don't know. Anyway, those are the parts of myself I don't want to look at, explore, admit. Are those the things I wanted when I became their mother?  Are those the things I still want, but will never have? Have I dealt with feeling of loss of a child that "might have been"?  What kind of monster asks these questions?  

It's a lot. That's all the admitting I can do for today. Are you really sure we want to hear more and am I capable of giving it?

This is us


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