I Thought We Had More Time.


Those eyes.

Those eyes.

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 would’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 the cruelty that the cocktail of fate or genetics or 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 realize 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 realize 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 rearview 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 lithe 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.

But he knows now.

I thought we had more time.


  1. says

    Jamie, you just blow me away with both your writing and your strength. Owen and Parker are both so lucky to have you. This is both beautiful and heartbreaking. Thank you for writing it, and for sharing it.

  2. Angela says

    Jaime, maybe the silver lining to this (if you’re looking for one) is that he can articulate the feeling of being sad. Maybe what comes behind that is a deeper understanding of more things – things you didn’t think he would be able to understand like pride for working hard and accomplishing something, or a conscious determination to do something especially difficult. While yes, now he knows, it’s also an awakening of, wait, he knows! If he can see his challenges for what they are, maybe there’s way more he can see. Thank you for writing this. . .and all of your posts. The raw perspective keeps me coming back to read.

    • says

      I totally agree, Angela! I can definitely see that silver lining – it just so very faint right now while the clouds are thickening, while the “then” part of this seems so far away. But you are right, it is there. This horrible comprehension will hopefully lead to wonderful comprehension down the road for him. Thank you so much for shining a light on that… J.

    • says

      This is what I was feeling as well. Both of your children are gifted, well beyond most children at this age.The open vulnerability, the easy expression of feelings and the generosity of spirit. That is more than a silver lining, it’s a gift that has not been bestowed on very many.

      The heartbreaking worry of how best to face the challenges coming your way is something all Mothers feel, although I can not imagine your particular challenges. I can say, however, I would be forever grateful to have two such incredible souls standing beside me when they do come.

  3. says

    Jamie, my heart is in my throat as I read this. You are so full of love and your children feel THAT, I can assure you. What a hard day… Sending you love and assurance that it is going to all be okay because you’re just the mama that your babies need. Xoxo

    • says

      Thank you, Michelle. I don’t feel like there is very much I CAN do on so many of these things we encounter as parents – but I can love them – and let them know it as often as possible. xoxo

    • says

      Isn’t she though? That is such a source of pride for me that I am tearing up as I type this to you. And the best part of it all? It is all HER. You cannot teach instinctive empathy like that to a five year old. It’s just who she is… Thank you for seeing that, Lindsey. xoxo

  4. says

    you are a strong strong mama. and your children are so lucky to have you. wonderful and painful to read these words today. much love. xoxooxoxoxoxoxo

  5. says

    Oh my heart… Aches for you but also is in awe of your sweet girl… What a gift she gave you both in that moment. But the knowledge for you son, that he is different from other kids in some respect, is big. My daughter has celiac and I know it’s different, her ailment is invisible and can be corrected by a strict diet, but I felt my heart break (as it continues to do on occasion) when she feels her difference and the realization that for her it is forever. So my heart goes out to you for not having more time to take this on, but it’s clear that the love in your family is huge, and what a gift that is for you all.

    • says

      Thank you for this, Dana. My heart goes out to your daughter – and to you. Regardless of the ailment or disability, it hurts. It hurts then to live it and it hurts us to watch them go through it. I truly appreciate that you’ve shared your story here… J.

  6. says

    Ok. I just wrote a longer reply raft got deleted. Suffice to say A) he’s going to turn this into his strength. I know it
    B) that Parker is &@$? Amazing and THAT made me cry!!
    C) it wasn’t you NOT taking the damn prenatals!

    • Stacy says

      Hi Jamie- “I thought I had more time?”. I can see myself asking that same question one day (probably in the near future) when my very articulate and aware 3.5 year old wants to know about her daddy. It causes me great pain even as I write these words because as mothers we do everything humanly possible to protect our kids from the ills of the world, disappointments, unfairness, and it pains us to know that even though we would take their pain as our own, this is not possible. I brace myself for the question(s) and pray that God will give me answers that will soothe my daughter’s soul. If I could “will” her father to be in her life then I would but I have no control over the decisions that he makes. But my preschool-aged daughter will not understand that. And “No” Jamie, it had nothing to do with the prenatal vitamins.

      • says

        Thank you for sharing your story here, Stacy. We ALL have stories to tell, obstacles to overcome, the need to shield our children from approaching storms, don’t we? All we can do is protect then when we can, and hope we’ve done our best to help them protect themselves when we can’t… J.

    • says

      1. I love you
      2. I know, right!?
      3. I love you and I know you’ve been telling me this for four years, but that will always haunt me for some reason – as scientifically ridiculous as it may be, it’s my “thing”. Or at least part of it.

    • says

      I think both of my children are (admittedly not exactly objectively) gorgeous, but you nailed it here, Stacey. It is their souls – the stuff they’re made of – that can’t compete with their beautiful eyes or their soft skin or the reddish highlights in their hair. THAT is the beauty I see on them that astounds me every day. Thank you for noticing, too… J.

  7. says

    I read this yesterday and can’t stop thinking about it. Your words are so heart-wrenching and so true. While I can’t relate to this specific situation, I can relate to being a parent and experiencing the pain of simply not being enough to protect our kids from the world, whatever those things they have to face may be. Our love is so fierce, it SHOULD slay all the dragons. I love your daughter’s words here, I love how our children surprise us, I love how you describe and love your son. Your words here matter, thank you.

    • says

      “Our love is so fierce, it SHOULD slay all the dragons”, indeed. Isn’t that the most heartbreaking part of it all? That we are bystanders for so much of his, or ushers at the very best – guiding them through life with nothing more than a finger pointed towards where we think they should go. Thank you for your beautiful thoughts and words here… J.

  8. Fern says

    Margaret and I together just read your article and cried..but GOOD tears
    You know you’ve done something right when Parker jumped in and answered Owen in such a loving way.
    We both feel confident that whatever obstacles Owen faces he has a tremendous support system.How wonderful is that!
    Thinking of you with love
    Fern and Margaret

    • says

      Thank you both! I know that he will over come what he needs to in his own time, and there are days that that is easier to see than others, certainly, but the love he gets from people like the two of you means the world to me. xoxo, J.

    • says

      Thank you, Hallie. Yes, there are times that I cannot believe that so much heart can fit into one little body. She amazes me – they both do. xoxo, J.

  9. katherine anderson says

    Catching up on your blog. This hit me hard recently, too. It’s so heartbreaking to hear them articulate their feelings about this. Put me into a major sadness all over again. And on a lighter note, why does it always come up in the car?!

  10. brenda says

    Read this with the tears flowing…I have a special needs child and also a 5 year old Son who amazes me how he sees and interacts his sister and the things he says. Beautifully written.

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