Spinning

Lately, Bennett has been giving Tom and me little performances in the evening, usually a combination of dancing and karate moves.  He twirls and then chops the air with the heel of his hand, or bends over and kicks his back leg up into a handstand.  By this time, Avery has joined him and they jump and spin all around until they become dizzy and fall down.  I always worry they’ll bump into each other, accidentally konking heads, or that a stray kick will land in someone’s eye. Especially, I worry about Avery.

When he does the kick-into-a-handstand move, my mind imagines the steel staples that hold his breastbone together, and everything becomes blurry for a moment.  Was it 6 weeks, or 8, before he could wear a backpack?  I try to remember what the doctor said, but what does it matter?  It’s been 16 weeks already, plenty of time for everything to have healed, surely.   Why can’t my own heart let go of it?

Sometimes when he snuggles next to me I can feel his heartbeat through my skin.  It’s strong and sure, he’s bright and full of life.  There is no sign that anything is wrong; there is no reason for me to hold on to him so tightly, or to demand that he go slow, be careful, and always, always hold my hand. 

Just as it seems like yesterday that we were watching great white flakes of snow fall from the sky on the 11th floor of the Hotel Deca in Seattle, Avery freshly released from the PICU, still smelling like the Hibiclens soap I bathed him in twice (per instructions) before surgery.  He sat in the big bed surrounded by pillows (I was afraid he might fall) watching Horton Hears A Hoo.  

The boys watch the same DVD here, in our new place, in our new life.  A person’s a person, no matter how small.  I think of the small hole in Avery’s heart, now repaired.  I think of small changes that can make a big difference.  I think of the small things I can do:  email a sad friend, cook dinner for my family, put clean sheets on our beds. 

The little boys dance and spin and fall down, they dance and twirl again, they fall again and I watch until my head spins.  They say, “Look at me, look at me!”  and I am.  I’m looking with my whole heart.

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About jennifergg

I am a daughter, sister, wife, and mother to three sons. I am a cookie-baker, storyteller, kisser-of-boo-boos, and an advocate for children with disabilities. Pinwheels is my blog about life as the mother of a boy with Down syndrome. I also have a website at www.jennifergrafgroneberg.com
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12 Responses to Spinning

  1. Angela says:

    Stop making me cry!!! :)

    I can still smell that soap, too.

  2. Kleidy says:

    Beautiful words, as always :D . Congratulations on your new place and new life :D . I’m reading with my whole heart :D

  3. Niksmom says:

    Beautiful. I’ve missed your voice. Glad you’re back.

  4. Amy says:

    aww that is so wonderful jen. I have the same thoughts with mayson and her eye surgery she just had. wondering if every little bump may make a stitch let go. scares me to death!! she is only a week out from surgery but still!! hugs!!

  5. Monica says:

    Sounds like your life is full of love and joy. What else matters?

  6. Jennifer says:

    Beautifully written. You are so so so so so talented. We are lucky to have you in our community to share your words with the world and help them feel the things we feel for our children.

  7. Jordan says:

    Wow, what a beautiful post. I felt like I was there! Enjoy those joyful boys. Also, I don’t think I’ve clicked through in a while – your blog looks great – I just love that banner photo!! So sweet.

  8. candace says:

    Jennifer,
    MY heart just wrenched as I read about your struggle and fear for Avery after his surgery. I have a daugther with CP, but I have felt these fears. Fears that few people experience. You put into words what cannot be explained. Beautiful!
    Candace

  9. Tricia says:

    Georgia recently had to have a chest x-ray when she had croup. I know those steel wires are in there, and the patch over her PDA, but wow…if I wasn’t surprised to see them again.

  10. starrlife says:

    It’s so funny how we can at the same time feel like the heart surgery was just yesterday and also a very long time ago! Most times I look at the scar (we call it her love bump) and barely notice it and then other times I see it and my own heart aches for the trauma of it. Beautiful post.

  11. wesleyjeanne says:

    Oh my you’re making me cry. Jennifer, you write so beautifully.

    I pray that you continue to focus on those small things, those wonderful boys, your lovely life with them.

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