If you follow Callista's facebook group, you probably know I have been suffering from a huge half-case of writer's block. I sit here, write a few sentences and then trail off into a somewhat incoherent ramble. Once I reread it, it makes no sense and I decide not to publish. It's a vicious cycle in my brain and on my laptop.
But then a fellow SB mom messaged me with "You blog, don't you?". Well, crap. Yes, sort of, I am a slacker, oh no! I mean, I've got hundreds of posts, that counts! She says "Am I the only one who gets tired of being 'inspirational' to others?" We chatted a bit more, about folks tagging her in every inspirational post on facebook, about comparing her child to other children with special needs even if there weren't actually any similarities to be had. Although I don't have the same experience as she does, I can empathize (Have I mentioned how much "God gives special children to special people" makes me want to blow a gasket!!!). And so comes the blogging on behalf of a non-blogger.
As mothers of children with special needs, we go through trials that most parents don't ever have to experience. Our children struggle with things that typical children don't. Yes, life is much different for SN families, but does that make us something worth celebrating? I have conflicting feelings about this. One one hand, heck yeah I want to be recognized for all the additional hardships we go through and overcome on daily basis. It is hard, it is tiring, and sometimes it goes unrewarded with progress, answers, or a good outcome. So when someone says "You're amazing! You're so strong!", I take that as a compliment, because you're darn right I am. But on the other hand, I'm just a parent. I don't want to be kicked out of the "normal mom club" just because we aren't exactly normal. I cringe when someone says "I have _____ going on, but you've got so much more to deal with". Yikes.... I won't lie, I roll my eyes a lot when I see parents complaining about their child getting into everything, how they only want to eat chicken nuggets if they're a dinosaur, or they refuse to drink anything unless it's in the one specific blue cup. I'd trade our issues for those any day! But that doesn't mean I should be the one you rate your troubles with. We aren't the same, and that is okay.
Just as you and I aren't having the same problems, special needs moms don't always have a lot in common with other SN moms. The same goes for our children. My child with SB is completely different than someone else's child with an unsimilar diagnosis. At this point, she's a lot different than children with the same diagnosis too! The SN term is used broadly, but we are all insanely different. While we do have empathy for one another, we don't always have advice or need advice from one another. I cannot connect with a heart mama or a DS mama the way I do with my SB family. Lumping us together is the same as saying "Hey! I have a nose and so do you, we will be friends forever and ever!". I know lots of people with noses, and I don't necessarily like them all ;)
As for those inspirational memes, I need to refer you to my SB mama friend Mary Evelyn's post on her blog What Do You Do, Dear? where her family photo was stolen and made into a mushy meme. These kind of memes are well meaning and most have a great message of perseverance, overcoming odds, and living life to the fullest. While it's sweet, we don't always feel inspirational, nor do we relate, especially on our toughest days (or even on our good days!). I love to use Callista's adorable, smiling self to promote awareness for SB. Hopefully my efforts can save another child's life when a pregnant mom sees her and realizes it's not the end of the world when your unborn little gets the dreaded diagnosis. But do I want her picture or anyone elses out there with (GASP!!!) the most annoying "God only gives you what you can handle" or worse, the special children quote... Um, no thanks. Don't worry, we love God too, but if you tag me in that saying, I am mailing you a smelly sock. You can do with it as you please.
If you think we are inspirational, you're right. But not the way that the internet portrays. We are inspirational and strong because we have mastered the ability to sleep all night at the hospital with a million beeps and five hundred people coming in at 4 o'clock in the morning "quietly" banging every utensil in the room and turning on every single light while trying not to disturb you. We are strong not because our child has a disability, but because we've somehow managed to figure out how to carry a set of braces, a diaper bag, a purse, a feeding pump, paperwork, and a limp child who is offering no help whatsoever all at the same time. We are amazing not because we gave birth to someone a little different, but because we can still manage to function as a normal human being with a little caffeine assistance. When offering support to all children and moms (yes, ALL!), recognize what we do, not who we are labeled as <3
My friend, I hope I did your feelings justice!