Wednesday, February 22, 2012

The How Long Game

When you become a mom of a child with special needs, you don't know it, but you start a very interesting game, it's called the "how long" game.

The premise of the game is to see how long you can deal with all the shit, the grief, the anger, the fear, the ignorance, the stupid/hurtful comments, how long can you push it inside of you before it all comes spilling out.

I've become the master at playing this game, but I wasn't always this good. In the beginning one mention of Down Syndrome and I lost the game, I broke down in a scary heap of snots and tears and self loathing. I couldn't think of DS without crying, without an ambush of negative emotions flowing through me.

I remember I was on the bus one day, while I was pregnant, after the diagnosis, and no one said anything about DS, nothing negative happened that day, but I was listening to a song about acceptance and I broke down and cried hysterically on the bus. I couldn't hide it, I couldn't stop it, I had to let it all go. Someone asked if I was okay and I thought "how do I explain DS to them, how do I let them know all that is going on in this head of mine?" I told her I was fine, just tired, and the how long game started.

Because the how long game isn't only about time, it's about quantity as well. How much can I shove away without letting it get to me? How many stupid questions? How much hurt? How many times can I hear the word "retarded" without flipping my lid?

But the thing about the how long game is that in the end it wins. Because you can only hold in emotions for so long. You can do it for hours, days, months even. . . . but they always come back bigger and badder and they will get you.

Today Seth went to Tae Kwon Do. He started out doing one on one lessons and then he went into a class with other kids. . . and he hasn't been doing so well. But I've been his personal cheerleader through it all, saying "you can do it", "go get 'em Seth" and I just couldn't do it today anymore.

I was sitting there, watching his class, surrounded by other parents, and this one father and son, the son had just finished his class, and he was commenting on Seth. Saying "he can't run", "he's running slow", "look how small he is". . . and I just wanted to scream "SHUT THE FUCK UP". Yes I wanted to scream at a child. And all I could do was put on a very fake smile (and I'm sure everyone knew it was fake) and say "well he's trying and he needs to learn too".

Finally they leave . . . . after much commentary from this little bastard. I'm sorry but that child single handedly ruined my day. Why didn't his father tell him to shut up? Well not shut up but just redirect him. Why did my son have to be under this kids microscope today?

And then I noticed that Seth wasn't being part of the group, nor were the teachers even trying to integrate him into it anymore. It's like they gave up on him today. And you know what? I did too. After ten minutes I went in, got my son, and left. I couldn't sit there anymore. I wanted to scream, I wanted to shout, I wanted to break shit apart- I wanted to be angry but I played the how long game.

It wasn't very long. We walked the two minutes it takes to get home and he decides to knock on his grandmother's door. So I hear "How did Tae Kwon Do go?". "Great, Seth did awesome." . . . . how long. Go upstairs to my apartment, Seth didn't want to go in, he wanted to hang out in the hallway, finally get him in . . . . and as soon as the door closed I sat on the floor and cried.

It was that silent sort of cry, the one where tears and tears pour down but you have no voice, no sobbing, no whimpering, just tears. And through all of those tears Seth just hugged me and sucked his thumb. I lost at the how long game.

Usually I can hold it in until Seth goes to bed, or I have a minute to myself, but I couldn't. And I couldn't imagine that my son was comforting me when I was crying about him. Did he even know? Does he even understand?

The thing about the "how long" game is that it becomes the "how much longer" game. How much longer can I go through this? How much longer do I have to feel all this pain and hurt and sadness? How much longer until he learns this or does that? How much longer until bedtime so I can breathe a sigh of relief? How much longer until I'm no longer plagued by these emotions???

How much longer until I completely lose it?

I don't know but I'm sick and tired of this fucking game.


  1. I fell apart about 2 weeks ago the same way when Tera was just starting what turned out to be pnuemonia. I called my mom in tears wondering how much more she, and I, could go through. Since she's only a year old, I can't imagine how much harder it is when people actually "know" she has DS. I think now people can't always tell. But I do already find myself comparing her during my weak moments even though I know it doesn't matter when she does things. It's an unfair card we've been dealt despite people thinking we've been "chosen". Cry it out and get angry, better out than in. I hope tomorrow is better for you :)

    1. When they get sick, and things all seem to go downhill - it's hard not to think you can't go through anymore. I look back on the past four years and I think "wow look at all we've gone through, look at all I've done" - it's pretty amazing and it gives me a moment to say - yeah I'm so made to do this.

  2. I notice I have good days and bad days with this very thing. Some days I can tolerate the stares and the whispers and rude comments...And others I can't.
    I will never forget the day I almost punched a 7yr old kid in the face because he asked me with a smug, disgusted look on his face why Russell looked so funny...I hate it!! And the thing that hurts me is that this is forever...We will have to forever feel these emotions. The rage and anger, or just the stab of pain through your heart when someone treats your kid as less than. And sure there will always be those great blessed moments of joy and blah, blah, blah...But yes, there will always be those other moments too, and that's the truth of it...And they are tough moments to get through.

    I cried when I read this. I cried because you remind me of me. Because I walk this path too and I have these ups and downs same as you. As much as it made me sad to know you were hurting today, I am glad you shared. Helps me to know I am not the only one on this roller coaster of emotions.

    1. Jenny - honestly I always share the bad. I don't want others to think that they are alone in all of this. This is it, this is how I feel sometimes. Today I'm much better. Seth let me sleep in!!!