Thursday, March 25, 2010

Denial: It's Not Such a Bad Thing

It's the day before we leave for our Disney vacation and I'm hustling around the house, picking up the paraphernalia a trip with kids demands--favorite toys, high SPF sunscreen, small bottle of Johnson's Baby Shampoo. I'm almost done when I realize I've forgotten something critical: Max's anti-seizure medication. We keep it in a Baggie in a backpack. He hasn't had a seizure in a year, but we always carry the injection just in case.
I look at the plastic bag holding the shot of goop and it strikes me, suddenly, that I am not a mom like other moms who can pack up the clothes and the toys and the toiletries and go. I am a mom who needs to bring anti-seizure medication with her.
The realities of my son's cerebral palsy strike me sometimes like a bolt of lightning. Mostly, though, I don't think about it. Some of that has to do with my busy life, some has to do with acceptance, and some has to do with denial, which has actually served me well over the years. When Max was a baby, denial enabled me to return to work and actually do my work. As he matured, denial enabled me to stay upbeat as Max's challenges emerged. Denial enabled me to avoid going on the anti-depressants the doctor recommended (though I don't think there is anything wrong with taking meds if you need them).
I saw a therapist when Max was a baby; every Tuesday night, I'd haul him in his babyseat to the woman's office, and Max would doze peacefully as I'd sob my heart out. She told me that I was good at "compartmentalizing," which means I am able to block out painful thoughts and feelings. What's not so good about this is that it means I have a bunch of locked-up crap inside my head. It seeps out at times, sadness triggered by a poignant passage in a book or a blog, anger triggered by some seemingly small thing.
Make no mistake, I am pragmatic as necessary; I have gotten Max therapy up the wazoo, fought the insurance company to pay for it, tried alternative treatments, given him every opportunity to succeed. I have never been in denial about Max's needs. Yet I do have lingering vestiges of denial that I am the parent of a child with disabilities.
And I don't think this is necssarily a bad thing.


  1. Hi Ellen -- Denial serves a positive role in allowing us to cope until we can process something further. And when you say you're in denial about being the parent of a child with disabilities, I think that speaks more to the way you view Max as a full and complex human being with the disability just being a part.
    Look forward to hearing about the Disney cruise!

  2. We all use denial no matter the severity of our child's disability. I agree with Louise that it's a coping mechanism and I think, too, that as we come to terms with having a child with disabilities denial perhaps morphs into acknowledgement that our child is who he/she is supposed to be. In any case, revisiting difficult feelings and watching them as they bubble to the surface is probably really healthy. Have a wonderful trip.

  3. Yes, I'm with you on that. I sometimes surprise myself with similar situations - oh, got to bring the meds... in my case it's "oops, need to make sure the machine she uses to talk is fully charged before we hit the road..."
    I think that balance between addressing all of your child's typical and not-so-typical needs and still feeling like just a mom is a critical tool. If I really felt as different at the things I must do to care for Addie, I'd probably fall in a slump overwhelmed. But i don't. I pretend changing a 7 year olds diaper is not different than changing a toddlers. I sling her communication device over my shoulder like it's a bag of sports equipment.
    Just can't think about it all, all the time. Great post - happy vacation!

  4. It bugs me when people say denial as if it's a dirty word. It's simply a coping mechanism. Having hope for your child is so important...and sometimes hope can also look a lot like denial. Hope or denial...either way it allows me to celebrate my child for who he is. And that's definitely not a bad thing!

  5. Great post. Compartmentalization, as you point out, is an extremely useful skill. What's being called denial could be seen more as a refusal to define your motherhood or your son's self-hood by leading with the constraints either of you live with----better for all concerned and a solid basis for his best development. That stress bursts through at the odd moment is just a part of an ongoing reality. If "denial" means not giving it the upper hand most of the time, more power to you and your boy! He's a real cutie. Hope you all have a wonderful time!

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  7. Nice blog! There have a chance that we can have an furthur exchanges. May be we have common interests.Let's keep in touch.Also I will always pay attention to your blog.

  8. This is the first time I've come to this site ( I was directed here by a friend who has a disabled niece). I felt like the words I read came directly from my own head and heart. As a mother of a disabled child who is a twin, I often find myself using denial throughout the day to do things like change my 6 year old's diaper. And because she is a twin I have an example staring at me in the face every day in the form of vibrant and bright boy who at times seems like a constant reminder of what she is not able to do. If I didn't employ those denial skills strategically throughtout the day I'm not sure if I'd be able to function at all. Every milestone he reaches is bittersweet for us and although many of those thoughts remain unspoken, they are there. I could not agree more with Louise's comment about how this mechanism l allows us to see our children for more than what others can see they are unable to do. Denial also allows me to ignore the stares of people who don't understand, who are curious, or who are just plain rude. And because denial is not our only coping mechanism, we somehow are managing to raise 3 children who are kind, loving, and empathetic to the struggles of others. My son has told me every year for the last 3 years that his wish when he blows out the candles on their birthday cake is for his sister Mia to talk. That tells me we must be doing something right, denial and all.