Sunday, June 3, 2012

acceptance vs denial

As moms young and old, experienced and new, we all go through it.  The look, the roll of eyes, the judgment, it strikes in a variety of places, the grocery store as you stuff donuts in your 2 year olds mouth, Target when they are screaming "mean mommy" at the top of their lungs, at the park when you take them off of the swing after 45 minutes of pushing and they look as if you chopped off their leg, no matter the circumstance, the thing that is always inevitable about being a mom is judgment, and worse yet, from other mothers.  It starts really when you first find out you are pregnant, everyone has an opinion, how you should breastfeed and for how long, how your labor should be, if you should sleep with your baby, you get advice, some well intentioned, some pointless and rude.  But, in any regard it surrounds us.  I like to think of myself as someone who regularly shrugs off judgment and defines my own path, I pride myself on my inner confidence, some would say, it's cocky, pompous, but me, I just like living what I believe to be the best for me and it works.  So, at first I got sucked in, knocked off my confident pedestal and felt shaky.  Then soon enough 15 months in, with two babies, I got the groove, felt good, knew what I was doing, well as much as you can in any given day as a mom!

So, when Nolan arrived, the shock of the diagnosis hasn't been the most difficult part for me, honestly, this whole fitting in to this new world and feeling comfortable as a mother to a child with special needs, that is the most challenging.  I have a way I WISH I could do it, that I WANT to do it, that if I were stranded alone on an island with my family, it is how I would do it, but it's different with society.  You may say, why? Screw it, do what you feel is best.  But, here's the thing it is isn't that easy.  See, there seems to be this underlying judgment between mom's even in the special needs community and in my experience even more so.  How many therapies are you doing?  How often? What new techniques are you trying? Have you read this book?  Have you heard about this study?  I soaked it up in the beginning, feeling that was my "new" path, I HAD to go down, so why not go willingly?  But, now? It just doesn't fit me.  It's not just about the therapies that I am not a huge fan of, and question their long term benefits in the real world. It's the whole vibe of this society, this club of extra chromosome babies.  I just want to be a mom to all of my kids, I don't want one singled out at "special" or "different" based on one tiny little gene.  I feel like they are all special and different and I can single each one of them out, but I don't and don't want to.  I want to love them, cherish them and meet them where they need be, but at the same time, function as a family, above all else, above the diagnosis.

One of my favorite bloggers gets criticized for this, people feel that she isn't "real" enough, because she doesn't complain, nag or moan about Down Syndrome, instead they say that she paints an unrealistic picture of life with a child with special needs and it isn't all rainbows and unicorns.  Don't we all know that? Doesn't every parent on this entire planet of ANY child with ANY needs know that raising children is TOUGH and LONG and HARD?  I just don't understand why in our community we need to have that "angst" voiced to be "real".  Now, in saying that, do I sometimes have bad days when I am sick of being pregnant and hauling Nolan around and feeding him with a freaking spoon and he can't stand up to be picked up, so bending over one more time may just be too much for me, YES, HELL YES, I want to scream SHIT, when are YOU GOING TO WALK ALREADY!  Of course, I have those days, of course, I wish instead of screaming at the top of his lungs, he could say, Mama thirsty....ANYTHING!  But, he doesn't and he won't most likely walk or talk for years to come, so what is the sense in crying and moaning about that, or sending him to therapists or appointments to make him what? Different? Easier?

You see, I often read posts and blogs about people who have positive outlooks on special needs and even have been in conversations with other mothers and they say, "just wait, it gets harder." Like you need me to suffer with you; to feel you.  And if I don't relate, if I don't go there, I am in denial and not fully ready to accept my son.  It takes me to many well meaning people who talk about meeting their cousin or friends kid who is older with down syndrome.  I am not in denial or avoiding the inevitable because I don't want to go to the annual conference or read literature endlessly, or attend dances and functions that right now, Nolan doesn't care or need to go to.  See that's the thing, do I want to go? No. It's just not my thing, I compare it to if I had cancer.  Some people walk and shout from the roof tops that they are survivors, 5 years 10 years 20 years later, they wear ribbons and put them on their cars, they go to support groups and others, you never knew had it.  It doesn't mean that those who chose to remain intimate with it were in denial or embarrassed or felt alone, it just means they don't need that, it isn't their outlet and that is perfectly OK too.  I don't judge either, it is THEIR way of dealing and handling it and we all should have that right.  But, in saying that, for my son, I will go, when and if he needs and wants to attend functions, of course I will be there cheering him on, just like I will give my sweet princess Audrey a Karate/Pokemon party she is requesting, do I want to NO!  I want ponies and princesses, but she wants Pokemon and Karate, so that is what we will do.  I will do anything for any of our kids to make sure their needs are met and desires fulfilled to help them become healthy, happy adults.  And for Nolan that may mean, being involved more in the down syndrome community, where he feels connected with his peers and when that time comes, I will be there with bells and whistles!  But, for now, it doesn't help me, and isn't that OK?

I guess it's very difficult to put into words and explain to moms of typical kids but also special needs, I invite conversation, will chat about my kids all day, everyday, but to define my life or our family's life as down syndrome, well, that's silly, its 100 other things too and because we don't live and breath it, or talk/think about it every day, doesn't mean we aren't supporters of people with special needs, or that we love Nolan less or are trying to hide it or run from it. It simply means that we embrace all of our kids; in all ways; all of the time.


  1. Oh baby, I can SO relate. Any "label" that makes you or your child "different" has a club that goes with it, whether it's adoption, or special needs or a girl who like "boy" things or vice versa--whatever. And the fact is, it's just a small piece of who that person is, it does not define them or you, or your family. Thanks so much for sharing your thoughts--you explain it so well!

  2. I love it when you post! I can relate to many things in here. I often feel judged with the things I do not do with Russell, all the therapies and stuff. And I always knew from day one I was not interested in being a part of any local support group...Even with my other kids I was never into those "mommy groups"...So why start now with Russell?

    I feel judged sometimes on my blog, the things I write about. I struggled off and on for the first two years and I would write my feelings out...So it's not all positive and upbeat...
    There are times I feel judged by the Moms who accepted and embraced Ds sooner than I did...That they think they love their child more than I do cause they came to that place of peace sooner...
    I didn't like reading blogs where everything was awesome all the time...Not because I didn't believe them to be true or thought they were fake...But because I simply could not relate.

    Judgement from others will always be there...We all just need to learn to tune it out...Do what we feel is best for our own children and allow others that same right.

    Excellent post!!


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