Growing up with Oli

4 Feb

IMG_1076“You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world.”
― Woodrow Wilson

I have often wondered what it is like to be a sibling of a child with a disability. I know it’s an adjustment for any child when a new baby is brought into the house. But, what about the child whose life is forever changed beyond just having another little person to live with. It is so much more than parents now being more preoccupied with feeding routines, frequent diaper changes and crying episodes. And it’s more than just knowing that you now have to share mommy and daddy’s attention with a new sister when, well lets face it, you probably weren’t all that thrilled about her joining you. Especially since you were an only child up until now.

Your life changes because now life is riding in the car for hours and then sitting in little rooms with crappy toys and being told to “be quiet” while you try to wait patiently. It’s waiting in these rooms several times a week when all you really want to do is go back home and play with your toys and watch the Cars movie…again. It’s sensing the atmosphere change in your house and feeling the weight of a sadness that you don’t understand but, seems to have followed your sister home from the hospital. The weight that seems to intensify after waiting in another one of those little rooms.

As you get older you start to notice that your sister, who you have waited to play with since she was born, never seems to get old enough to play like you. She doesn’t sit up very well when she does learn to sit up and then she can’t see when you try to show her your newest Lightening McQueen car or your new Hot Wheels race track. Mommy tells you to put your toys in her hands to show her things, but frankly this doesn’t make sense either because then she only puts your new toy in her mouth and ruins it with slobber. She never learns to move around the house which means mommy has to carry her every where. The words “Oli just needs more help” are lost on you when you just want to be picked up and carried around like before. You love your sister but, just don’t understand her. You ask questions and want to know why she is so different than you but, mommy’s explanations that God made her different don’t make sense. Why can’t the doctors just make her better. She is obviously sick and this is what doctors do. Why doesn’t she ever get any better? Why do they keep taking her to the doctor if they don’t fix her?

As you grow and change, learn your letters, learn to count and tie you shoes you try to show your sister so she can learn too. But, your attempts are to no avail and she doesn’t seem to get it. She won’t talk to you and now you are drifting farther and farther apart. She starts to do strange things like flap her arms, hum loudly and shake her head. You try to play like her to connect with her in some way but, what seems to amuse her is just boring to you.

You never give up though. You never give up trying to form that connection with her.

She is your sister despite your differences. Mommy and Daddy have always taught you to love her and help her and that is exactly what you do. Not so much out of a feeling of obligation but, because that is just who you are.

Kekoa you are such a special little boy. I love that you just love her and even though it’s been 5 years since everything in your life changed, it has never dampened your spirit or your love of your family and life. Please keep your kind heart and don’t pay any attention to people who may try to lead you down a different path.

You, my son, are going to change the world.

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6 Responses to “Growing up with Oli”

  1. Dean B February 4, 2013 at 4:57 pm #

    Lovely picture of your son and daughter. I love the way the photo shows how patient he is with her and the love too … it’s obvious with the way he holds her hands. Thanks for sharing a heartwarming pic in this very cold and gloomy day (in my side of the world). – D

    • mommyhasissues February 4, 2013 at 5:09 pm #

      Your welcome:) He’s such a sweetheart.
      It’s gloomy and rainy here too in Austin,TX today.

  2. rebecca2000 February 4, 2013 at 5:43 pm #

    It isn’t easy but it is from what I observe and hear from my friends with siblings that have disabilities. I was the only one of mine without some learning issues. I saw my sister teased and mistreated and, even though I would fight with her, it would hurt my soul a little. I was the one that encouraged her and we are so close now. I think in some ways it is tough but in others, the love is way stronger.

    • mommyhasissues February 4, 2013 at 8:07 pm #

      See I don’t have any idea of what this is like and I often wonder what he goes through and what he will go through. I’m so happy to hear your perspective on what it is like. I’m glad to know that the love is stronger.

  3. rebecca2000 February 4, 2013 at 5:44 pm #

    ps. I vote for you every day. 🙂

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