Sunday, February 20, 2011

Denial-What is it good for?

I struggle sometimes to balance my want to live in denial with my NEED  to keep a positive but realistic outlook. I want to ignore  to vehementantly deny the possibility that my son might have delays and special needs for the rest of his life. But, I can tell you one thing that I have learned in the past 6 months...having a special needs child radically changes YOUR life....even if his "specialness" is just possibly temporary.  These radical changes permeate more than the big picture aspect of your life. Even the mundane day-to-day living has become completely different.

Almost everything I do with Nolen is calculated, from how I try and pick him up by coaching him from laying on his back onto his side, then to sitting as opposed to just grabbing under the arms and going  to how I carry him differently then I carried my girls, trying to keep the pressure on his hips and not under his butt (so that he is encouraged to lengthen his body and not curl up). I try to make every moment and every interaction with him an attempt to instruct him, strengthen him, and encourage him.

 I push my son. I push him more than my girls were ever pushed, I stand for hours in the toy aisle analyzing which toys encourage suplination in his forearms. (Any suggestions?)  I sing ridiculously loud lullabyes over the sound of the EEG monitor being glued to his scalp and his screams. I spend hours at therapy making crazy sounds and faces and popping his binky in trying to keep him from screaming the entire session. (Again, any suggestions?) And in those session in which he just isn't having it and I would have whisked my girls up in my arm and walked away, I fight the urge and push him through it. Why? Because he needs to be pushed and my emotional need to protect him has to be ignored by HIS needs for therapy.

  I live, breathe, eat and sleep his difficulties daily. I watch his progression and jump for joy when a new skill is mastered, but I am constantly aware of the other milestones he should have reached but hasn't.  This is why I am so quick to recognize denial in those around me...I know and see his issues on the most intimate levels, I hold him when he has bad nights full of residual pain, I worry when he sleeps for a full day and doesn't show interest in eating, I watch and hear his frustration when his hands don't perform as he needs them too. I simultaneously beam with pride and cringe with realization when he adapts to using his wrists to move things because he can't open his hands. I spend hours on the phone with my sister adjusting his lab levels and demanding further test because 6 months later his liver and other levels SHOULD be normal, but aren't. (Any suggestions on how long post Encephalitis abnormal labs are  considered acceptable?)

I get that every parent or loved one of a child requiring different needs wants to ignore them, wants to gloss over them, wants to give their child more time, begs that it's just a time thing and not a real issue to be faced head on. But what good does glossing over do for a child who *might* have real issues? None. Just like becoming overly emotional when my son was in the hospital didn't help him it only exhausted me.

Because I am his mom, I don't struggle with denial because I am faced with this one hard truth---Denial has no value other than to make me feel good.

     Denial does not make a problem go away. In fact denying that your child has a problem only makes it a  bigger problem because you neglect to push them and seek out assistance and therapies that can make a HUGE difference when you start early.

   Denial is not the same thing as being optimistic. Optimism is choosing to hope for the favorable outcome. I hope, pray and believe that Nolen will be well, but I am very realistic about where we are, and less than comfortable with the fact that he might not be "normal". Ryan said it best, "Nolen just wants to be loved, and regardless of what happens, I am more than happy to love him"

So,  help me out here (since I did just let you read my diary) do you balance Denial with Reality? Worry with Optimism? Do you think you can be Optimistically realistic? Am I in denial about being a Pessimist?


Melonie said...

I really don't have any constructive suggestions, but wanted to give you a cyber {{HUG}}. As you push your son, you are also pushing yourself. The whole family deserves a pat on the back for choosing to "adapt and overcome" *wink* instead of just giving up or totally giving in to denial.

Elaina said...

I know it must get old hearing it, but I'm so impressed and humbled by you. I know that it's our job to do what we have to do for our kids, but I know it must be hard for you, in so many ways.

Denial does make us feel better, you're right about that. But reality has a way of smacking you in the face eventually, like it or not.