I read one of those special needs articles the other day that told me I was a superhero because of how “difficult” certain aspects of my life supposedly are. I also read another one after that, which compared my life to running a marathon 24/7. Guys that’s a lot of miles and I get out of breath walking up the stairs too fast. I’ve read so many articles like these by now that you would think it would stop eliciting a response, but on that particular day I hadn’t showered, not because my son with special needs wouldn’t let me, but because I DIDN’T WANT TO. I forgot to return not one, but two time- sensitive emails, not because I was so busy caring for my son. I SIMPLY FORGOT. I had also eaten a king size package of twizzlers, nope not because my son’s disability makes me want to emotionally eat, but because I WANTED TO and I lack twizzler willpower.
I also read another piece that said when God was asked what Patron saint the mom of the child with special needs would get, He replied, “A mirror will suffice.” I’m sorry, I laughed really, really, really hard at that one. Unless there is a Patron Saint of Twizzler eating that is not a term that should ever describe me. Oh and I’ve heard, God only gives special children to special people, so many times it actually makes me visibly cringe. And the same goes for, “I don’t know how you do it.”
So basically I’m a superhero, I’m special, a marathon runner and I’m a patron saint you guys! All because I gave birth and love my son. Ok I know I’m sounding a little bitter. And I know that people really do mean well. And I know that these are supposed to be compliments. And some compliments I love and cherish! Who doesn’t love hearing you’re a great Mom or your son is amazing. Or you’re doing a really great job. I appreciate compliments that relate to me as a mother, a person, or the work I am doing. Just not compliments that are associated with my son having a disability.
Try to think of it from my son’s point of view or any person with a disability. I’m considered extra special, a superhero, even a fricking Saint because having a child with a disability is so hard. How would a child or an adult feel to hear that they are so hard? That their parents must have superpowers in order to be able to parent them. That would feel like crap. And it’s not true.
If you had a child with a disability more likely than not you would do the same things I have. Love him/her with your whole heart and go to the ends of the earth to make sure they get the care and services they need. You do that because he’s your child. And because love is boundless. It has nothing to do with his/her disability.
I’m not sugar coating anything. Yes there are aspects of my life that are incredibly hard and I’ve wrote about them. I think it’s damn important to do what you need to do to stay sane. Vent to a close friend, paint, exercise, write, see a therapist, get on medication if needed, whatever you need to do, because yes there are moments when you will fall to your knees and you will have no idea how to get back up. Watching my child struggle to make friends, watching him work one hundred times harder than his peers to write his name, zip up a zipper, say how he feels. Yup pretty damn heartbreaking. Surgeries? The scariest times of my life multiplied by a million. The uncertainty about the future? Steals way too many nights of sleep.
I believe that pain, sadness, heartbreak are relative. Is my life harder than yours? No. And God help me if I start going around comparing how hard my life is with others. You have felt deep, indescribable pain and you might not have a child with a disability. Or you might and that pain may have had nothing to do with them. And my pain is not any more justified than yours. It’s pain. It sucks. For everyone.
Have I secretly rolled my eyes over Mom’s complaining that little Jonny won’t eat vegetables or Susie regressed in potty training or Timmy didn’t get to start at quarterback? I have and I have thought, “what I would give for those to be my worries.” But taking a trip down pity party lane only ends up with me filled with debilitating anxiety, so I’m pretty quick to nip those thoughts in the butt and remember how damn beautiful my life is.
There is no pedestal I want to be on. I am not a super hero. I am not a saint, I am not a marathon runner. I hate running! And I am not any more special of a parent than you are. Painting me or any other parent of a child with a diagnosis in that light increases the very ableism we should be working so hard to eliminate.
I will always and forever be grateful to those who try to understand our lives. Who want to help. Who include us. Who are there for me when I am broken. And of course I love those who briefly consider me to be a superhero, but I’d much rather be seen and loved for who I am. A fallible Mom, a child of God, just like you, who loves her kids and is just trying to do her best everyday.