One of the most common sentiments you'll hear from parents of children with special needs is that we are not saints or heros.
I'm sure that those labels sound like compliments. I'm sure those of you on the outside would think we'd be proud to be seen in that light.
But the truth of it is, we don't feel like saints or heros. We feel like regular people who struggle and who make mistakes. Many of us faced some serious grief and soul-searching when we learned our child's diagnosis, or when things have felt particularly hard or scary. It's hard to think of yourself as a saint with feelings like that. You don't feel like a hero remembering the fear, the shame, the blame, or the anger.
We struggle every day wondering if our decisions are the best ones for our children. We worry that we aren't doing enough, and then when we do as much as we can muster, we get burnt out and take steps back. We second-guess every medical decision, we worry about milestones even though we know we shouldn't. We will never be the mothers that we think we should be. It's a mother's curse to feel that way, and we are no different from any other self-doubting mother.
But the hardest part about being called a hero is what that says about our children.
When you say that I am a hero, I hear you saying that my child is a burden and that life with her must be such a sacrifice.
When you say that you don't know how I do it or say that you couldn't do what I do, I wonder what it is that you think I do. All parents feel fear, all parents worry for their children. The truth is that you could do it if you had to, and chances are that you will have some significant struggles with your children at some point.
The truth of it is that we are all ordinary parents. We all love our children. We all struggle. Some of the challenges for parents of kids with disabilities may seem more constant or apparent. I won't tell you that those struggles aren't real. But simply living with them doesn't make me a hero.
If you want to admire me, admire me for my cooking, my writing, or my laugh. Admire me for sharing something that makes you think differently about the world or the people around you. Admire me for sharing my thoughts and for giving you a glimpse into this beautiful life that I have with an amazing little girl: a girl who deserves way more admiration than I do. I can take that kind of admiration, I guess, even if it makes me a tad uncomfortable.
Because as much as I am an ordinary fallible person full of flaws and fears, worries and demons, I still do believe that I am the perfect mother for Cora. However it works that one soul gets paired with another as a mother and child, the match-up was spot on with us.
Loved this last year and love it even more this year :-)
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