I sad because my legs no work so good. I no run fast like Parker. My legs no work.
It’s the heavy silence that follows the bomb dropping, where all you can hear is the sound of your own heartbeat pounding out its instantly accelerated rhythm in your ears, followed by the air slowly leaving your body – the breath you’ve been holding since he said it.
Someone should say something. Someone should tell him it’s okay, that he’s perfect, that we knew things would be tough and that they likely always will be but that we will get by. Together.
Isn’t someone going to say something? Because I am doing all that I can just to hold back from letting out this sob that is building up in the back of my throat in the seconds since those words came out of his beautiful rosebud mouth just dripping with sadness.
But it is only me in the car with him. And Parker. And I am supposed to be the one to soothe him, to tell him…what on Earth am I supposed to tell him? That it will be fine? That it sucks? That I’m sorry?
I thought we had more time.
I thought that we wouldn’t be here yet, that at four years old, this boy – my beautiful boy that finally definitively learned last week that he is a boy, that can remember that my name is “Jamie” but still can’t consistently recall his father’s name, that thinks that the thing he poops out of is called his “tushie” and the thing he pees out of is also called his “tushie” – well, I thought we had more time.
I thought he had more time.
More time to walk through this world oblivious to having Cerebral Palsy, more time before he was aware of the cruelty that the cocktail of fate or genetics or bad luck or me not taking my prenatal vitamins regularly enough served up to him.
That was another of our “silver linings” – of the platitudes we told ourselves about his cognitive deficits, about how, At least he doesn’t realise it. At least he’s not aware of all of this – that he’s different – that most kids don’t have to work so hard just to get through each day and that it is not normal to have eight hours of therapy every week. At least he doesn’t realise that he’s different, we told ourselves and each other. Thank God for that.
But he knows now. Something that revealed itself on our drive to school this morning when Parker told me that Owen doesn’t look so good. I peered at him through the rear view mirror half-expecting him to be some horrendous shade of green, but his coloring was fine. I assumed it was likely because he was still upset that Scott told him he couldn’t wear his Oscar the Grouch watch to school today. Seeing this as an opportunity for good communication between them and a chance to have Owen talk about his feelings, I suggested to Parker that she ask him what was wrong.
Owey, What’s wrong? She asked sweetly.
I sad. He replied.
Why are you sad? She pursued.
I sad because my legs no work so good. I no run fast like Parker. My legs no work. He responded.
I think I gasped. Quietly, but it happened.
And then Parker saved me. This five year old who knows – my God does she know more than she ever should have to, than any of us should – she saved me. She just jumped right in and she gave him the best pep talk I’ve ever heard.
“No Owey, you’re going to be really fast one day. You can grow into my sneakers soon and I’ll give them to you – even though they’re pink – because they light up and that makes people really fast. And you should ask Daddy to help you with your running skills. Daddy’s really good at stuff like that. I bet you’ll even beat me one day!” She told him.
Telling her little brother that one day he would beat her in a race was the very height of generosity for my girl. For this little thing that has problems of her own – arthritis and sensory issues plaguing both her strength and her self confidence – her speed is the one physical trait she treasures and takes pride in.
And she gave it to him. With absolutely no hesitation, no reservations. She gave him that.
I thought she had more time.
Before she needed to start giving him pep talks and worrying about standing up for him and explaining things to him and for him. She’s only five. She’s not even in Kindergarten and somehow she just knew that he needed this.
And then we pulled up to his school, and I dropped him off, letting his therapist know that he was feeling a little sad today. He kissed me goodbye and looked at me with those clear blue-green eyes of his, the ones that always make people comment simply Those eyes!, and they were cast down a bit – no smile crinkles at the corners, no usual sparkle. Something in him had made the connection and he was feeling it.
It’s when you know that thing that you can’t un-know.
It’s when you see that look in your child’s eyes that you can’t un-see, or you hear that profound sadness in his voice that you can’t un-hear.
It’s unbearable. I ache for him – for his little heart that knows now.
And I dropped Parker off a few minutes later at her school, having turned to her at the first red light to tell her how incredibly proud I was of her. How she showed such generosity, and grace, and love towards her brother in those moments.
And then I called Scott as I pulled out of the driveway of her school, and told him what had just happened and finally set free all of those tears that had been impatiently waiting to be shed. And I wondered aloud what we were going to do, what we were going to tell our boy, how we were going to explain all of this to him.
I have cried on and off all morning – thinking about that conversation this morning and the conversations that are inevitably going to follow it.
And I still have absolutely no idea what to tell him. There are things that a hug and a kiss can’t fix. That I don’t know is the only response to, and yet still grossly insufficient. There are I’m sorrys that I want to utter quietly to him, that I want to scream and cry in frustration for him – wanting him to know that I’m sorry this happened to him, that he didn’t deserve it, that I wish it had happened to me instead – all the while making clear to him all the reasons I’m not sorry – not for a single second that he is mine, that I wouldn’t want anyone but him to call my son, that there have been four long years now that he has made me proud each day without ever knowing why.
I thought we had more time.
This post originally appeared on Scary Mommy, and is republished here with full permission.
Jamie Krug is a writer, wife, and stay-at-home-mom with a full-time job as the CMO (Chief Medical Officer) of her family. Her work has been featured on the Huffington Post where she is a regular contributor, as well as AOL. You can find Jamie writing at JamieKrugAuthor.com, where she tells the story of her family’s day-to-day struggles and triumphs in the wake of the devastating and still largely misunderstood rare diagnosis her son received at birth. You can follow Jamie on Twitter @JamieKrugAuthor, on Instagram @jamiekrug, or on her Facebook page.
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Have you ever had to have a hard conversation like this with one of your kids?