Fake it til I make it

The Special Ed coordinator in the school district we just moved to called this morning, and our chat was full of test scores and skill sets and seizure plans and how unfortunate the length of the waiting list at Children's Mercy Behavioral Health Clinic is and IEPs.  

In the background, I could hear the sounds of a vacuum from the TV, where I have pulled up youtube and queued up my son's favorite videos.

I maintained my positive, matter-of-fact tone...a tone that I emulate from mothers I have seen gone before me, mothers whose children have problems similar to mine, or more severe, mothers who don't have to put on a brave face because their faces are already brave, because I am a big believer in "fake it til you make it" and I know a great deal of my son's success will be tied up in me acting as his advocate until he can advocate for himself, and because I want to fill that role with grace and with humor rather than anger and bitterness.

But as I hung up the phone, I was both angry and bitter.

I am angry because this is not what I expected. I would have been an awesome Pinterest mom...making snacks shaped like penguins and art projects out of coffee filters.  Instead I have a cabinet full of saltines and a box full of markers that have long dried out.  I started buying him books before I even knew he was a "him"...picturing long bedtime routines that involved multiple readings of Good Night, Moon, taking for granted that he would love to read.  Instead, the books have been replaced by instruction manuals for small appliances.  Do you have any idea how boring those things are?!?  And I am tired, because Junior woke up at 2:00 this morning and could hear the humming of the refrigerator, which freaked him out and resulted in him screaming and sobbing about "the wrong noises, Mommy!" until I was actually contemplating unplugging the refrigerator because the cost of replacing spoiled food seemed, at that moment, negligible in comparison to his fear and upset.

I am sometimes angry when people are unknowingly dismissive..."It could be worse."  Yes, I know that.  Of course, I know that.  But the flip-side of that coin is that it could be better, too, you see, and, like every other mom in the universe, I want it to be better for my child.

I am sometimes angry when I realize how much of my parenting is consumed with damage control.

I am sometimes angry because I am often reluctant to speak of my anger in the fear that it will be misconstrued into anger at my son, or disappointment in who he is, when that couldn't be further from the truth.

I am sometimes angry because I never once imagined that I would be on the phone, coordinating further testing, learning to say the term "special needs" in a matter-of-fact tone and applying it to my child.

I am sometimes angry for a thousand reasons, many of them too petty and too small to even mention; some of them so big and tender and raw that I can only choke them out, through tears, in bed, at night, to my husband, who holds my hand in the darkness and says, "I know.  Me, too."

And as I am emailing the SpEd coordinator from one school district to update her on what this new SpEd coordinator will need, my son comes in and says "the youtube is being too slow. Can you come fix it?"   I tell him to hold on - this will take just two minutes - and slam!  He bangs his head into my computer desk, a sudden ball of fury and despair, and ­bam!  He does it again before I can even react, the cords in his neck standing out in stark relief as he screams so loudly that his scream actually goes silent, and it's panic that I see in his eyes more than anger, and I know he needs me to help him reign this in...

But a part of me kind of wants to bang my own head against the desk, too.  To scream so loudly that my vocal chords can't sustain the sound.  To just dissolve into a blur of emotions too big for my skin to contain and just let it go until someone bigger and wiser comes along to help me reign myself in.  

I don't, of course - I gather him up and fold his furious, flailing limbs against me and squeeze him, because the pressure soothes him, carrying him to my bed and helping him decompress. I try not to wince at the angry red comma on his forehead.  When he has calmed, we discuss (for the 3,987th time) what other ways he could have handled his disappointment...because some day, I am confident this lesson will stick, and he will turn to one of the many techniques we are trying to teach him rather than banging his head or biting his wrists and fingers.  Not today, but some day.

Twenty minutes later, I finish the email that was only going to take two minutes.  My tone is light, friendly, matter-of-fact, appreciative for her help, as always.

I make my son his mid-morning snack (saltines and milk...which makes it different from lunch, which will be saltines, cheese, yogurt and milk, but you know, he licked a nectarine last week and it didn't send him into a gagging fit of fury and disgust, so that's a plus).  I sit on the floor with him as he eats, talking about food and how good it is to try new things.

"Uhhh...I just like white crackers," he says.  "And vanilla milkshaves."  The only trace of his melt-down is a bump on his forehead which has faded to pink.  His skin and eyes are clear of the tears, yet part of me remains tense and watchful, almost defensive, knowing that, at any moment, any bump in the road, however minor, could potentially send him spiraling...

I have to let it go.  I have to push that aside, I cannot let that dictate the rest of our day.  Like my son, I have had to tell myself this 3,987 times and, again, I am confident that some day, this lesson will stick.  I think of all those other moms, with their brave faces and strong voices, and I think that maybe there is anger and bitterness beneath for them, sometimes, too.  

And until then, I just have to fake it til I make it and hope like hell that's good enough.