Sunday 26 February 2012

it's all gone Pete Tong

Mylo had a little playdate today with his pal C who is right around his age and pretty fabulous. M mostly ignored him and his lovely hugs, but that is to be expected.

I hope there will come a day, soonish, when I stop aching and feeling like I am in a slow, downward spiral after spending time with normally developing toddlers around M's age.

I LOVE this age.  How many 'firsts' can you cram into a time period without your head exploding from the sheer joy of it all.  I know what Mylo should be doing now, even though I also know that, disability or not, every little person grows, learns and develops at their  own pace.  It doesn't really make it easier knowing.  And no, before you ask, I do NOT begrudge, hate on, or otherwise feel angry at parents of NT kids. I do, however, envy them.

I envy them all those 'firsts' that come along in and around where they should, the way they get excited by new things, but not jump up and down, shit your pants excited, like an ASD parent does when their child gives them more than 5 seconds of solid eye contact.  They get excited because they have been expecting the next big 'thing' to happen and don't have to wonder for too long if and when it will actually happen.   I guess you could even say I am a little jealous.  Can you really blame me?

But again, I stress, in no way, would I EVER want any of my mama (or dada for that matter) friends to think I can't handle hanging out with them or their kids.  It makes my heart sing to watch M's little friends chatter away, hold their mama's hand, use a spoon or play (appropriately) with a toy.  How could it not, I love those kids (and their mamas).

It also makes my heart sing to watch my sweet boy do the things that HE loves and that HE knows how to do.  I am trying to find a way that I can mesh the two and come out on the other side with a little less bruising around my heart.  It is lesson in acceptance on a few different levels, and one which I am sometimes struggling to learn.  Please bear with me.  Only love.


  1. There is no need to bear with you, sweetie. How 'bout we just be there with you? Yes - only love. <3

  2. Oh Kate,
    You envy them. I envy you.

    Your son can walk, see, eat and enjoy things. He even squeals and has delight. He is very much alive.

    Things could be much, much worse.

    Remember when your heart is heavy that this is your Mylo. You didn't do anything wrong. This is who he is meant to be. He is not broken, he is an absolutely perfect expression of himself. That was what I realized about my severely disabled Anaya. There was nothing wrong with her. She was a perfect expression of herself. It was who she was meant to be.

    It took me a long time to learn that lesson. It came from the lips of the Buddhist wisdom master at the monastary. She said "Anaya is sad that you feel as though there is something wrong with her. That she is not good enough the way she is. She wants to bring you happiness and joy. She needs you to accept her for herself."

    It wasn't until that moment that I realized how my yearning for her to be like other children was in a way limiting my relationship with her.

    And our communication was based on eye movement and small sighs! I had to intuit everything using my senses and my heart.

    Be proud of your Mylo! He is brimming with life and adventure. (I love the couch diving. I wish I could play!)

    I love you mama.

    <3 Camara

  3. What amazing words you have Camara and thank you for sharing this wisdom!!!

    Kitty - I know words and thoughts about expectations are so easy to have but the feelings that come with them so difficult at times. Let Mylo suprise you with his accomplishments or the day to day things he loves to do. Were you expecting that he would put the balls in the pen - maybe - were you hoping - certainly, did he excite you when he did that, clearly. Cherish the excitement, embrace the joy where you can it always there for the taking we sometimes just have to look a little more closely.

    Oh and Max is really jealous that Mylo has his own ball pit! Love and hugs!