a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Friday, November 5, 2010

Sleep, Oia, Sleep

I remember way too many details of the day Oia was diagnosed with cerebral palsy. Details of the hospital, the appointment, the doctor, the ride home, and the subsequent hours of that afternoon when the world expected us to move forward but we had no idea how to and not even an ounce of will to do so. The details will never fade. Shortly after returning home from that appointment, Rob and I layed on our bed, both propped up on one elbow as we lay facing our world; little Oia, who was peacefully napping in the center between us. We were many things that afternoon, but mostly tearful and silent.

I remember feeling confused as I teetered the line of denial and hope. I scanned Oia's body head to toe as she napped between us, looking for any outward sign that might convey that what we had just heard about our daughter's future was all a big mistake, a misdiagnosis. She napped with her chubby legs relaxed and slightly bent. Her tiny hands were relaxed and unclenched, her thumb untucked. With some lingering hope in my soul I remember saying to Rob as I rubbed her hands, "But see, her hand is not fisted right now...." to which he softly answered, "Yes, Mo, because she's sleeping".

From that moment on there was no more denying it. We were a family who would forever live with cerebral palsy.

As I did then, and still do, I love to watch my little girl sleep but doing so can be so deceiving. Once Oia closes her eyes, I should make a dash for my to-do list and prepare for another day but instead I hover over her bed for just a few extra minutes and stare. I stare at what looks like a girl who lives absent of a life-long disability. It's as though her cerebral palsy drifts from her tired body into the still of the night, leaving her alone to be a typical child. It's the only glimpse I get of a girl who doesn't battle to overcome spastic muscles on a daily basis. A girl who is free of therapy, one who can run and jump and talk and see well. In slumber, there seems to be no stiffness, no tightness, no one-sided weaknesses, and no overflow. Only a girl whose stiff body becomes limber and restful and completely comfortable. But despite all, I can still say that I stare over my sleeping baby with ease... because I know that regardless, whether she's asleep or not, she is still so absolutely perfect in every way.


  1. What a beautiful post Mo! I watch Ben sleep too...so relaxed and peaceful. And you're right...perfect in every way.

  2. I wish there was a better word than perfect, because that's what Oia is.
    What a sweet picture of her sleeping. Love this post, Mo.

  3. I like to feel Hannah sleeping. I remember all those hormone surges when I was nursing, and if I held the baby I'd just want to pass out with her in my arms. Now the bigger she gets the more harm it does my neck to hold her. But I am addicted, I have to hold her and stroke her and sing to her and pet her and then I pass out for about an hour and trash my upper back and neck but I just can't stop, she is too sweet to let go of. It's funny that sleep is when you don't see the CP, sleep is when I brainwash Hannah. I whisper to her that her balance is good, that she is healthy and strong, that her right hand is strong and agile and more so every day, that her walk is excellent and getting better all the time, and I pet her whole right side just to create sensation, and I stretch her tight side of the calf muscles and massage her hand while it is nice and loose. Right before sleep I make her repeat things (speech therapy!!) to me like "night night" and sweet nothings (she mostly then just says Mama) and tonight, I got her to say "I love you" which filled my heart with joy. I often tell her putting her to sleep is the best part of my day. I am impressed if you can keep your Oia watching to just a few minutes, I sort of wish I could do that but I lose about an hour every night. Isn't it just wonderful?

  4. Beautiful, Mo. I love to watch Elijah sleep too - his hands are so relaxed and open when he's in dreamland. I can so relate, the CP just seems to evaporate when he's sleeping.

  5. I LOVE to watch my little guy sleep, it is like all the things he battles with his body, disappear for a moment.

    The picture is precious.