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

Monday, October 4, 2010


Rob and I took Oia to the park yesterday. Weather was remarkable and there was no other place we should have been than outside on such a beautiful day. The air was cool so Oia was toddling around in a comfy pair of pants, pink of course, the first time since last winter.

She played and smiled and enjoyed having the both of us there with her. The park was all ours and life was good. Then shortly later, a mom or two arrived with their young children which always has a tendency to set my mind in motion. And yesterday it did. The thoughts come without warning and for reasons that I could never find the right words to explain.

And, suddenly, those cute pink pants seemed to be in the way. And I'll admit... those pants are in no ones way but my own. Those pants cover up the ticket, the pass, the explanation; call it whatever you want, of who we are. They hide an important piece of our story. That little brace that accessorizes every one of Oia's outfits has become my sense of comfort. It answers a lot of questions before they even get asked. Being in public without it, like the pool of course, or when the weather is cooler and it's hidden under pants like yesterday, makes me feel no different most days than a fish without water. That brace is my security.

One may notice the cute glasses that rest on Oia's sweet little nose, or the eye patch that hides behind them, but glasses and patches are not entirely all that uncommon. One may notice the drool that hangs from Oia's chin or even her dampened shirt but she is a toddler after all, and for now that is within the realm of acceptance. Maybe some notice her microcephalic head but doubtful; she's been blessed with a beautiful blond ponytail that catches all the attention, not to mention the most glorious smile you have ever seen. They probably notice her limp or uneven gait but may assume she is a new walker and just tall for her age. They may notice her right arm functions a bit differently, a little slower than the left, but not always. If they're lucky, they'll catch an earful of one really important story known and told with conviction by no other than Little Miss herself, but likely to not understand a word of what she spoke. Then the question of "How old is she?" pops up which seems to fill strange faces with question. Maybe they know something is special about our girl... or maybe they don't. But, I can read their minds... they glance and they wonder.

Security comes in all shapes and sizes. Mine these days seems to come in the form of a molded piece of plastic that wraps around my daughter's right leg. It allows us to be who we are without question or rather it is the answer to the unasked questions. It allows us to be uniquely different. I'm proud of that little brace but no more proud of it than I am of the little girl who wears it. And needless to say, I'm thankful for it; it's functions are many. I just wish the whole world could see it... and all the time.

Picture from 10.2.10 while spending the day at Belvedere Plantation.


  1. Some days I wish I had some THING to answer the questions. But other days I'm so thankful I have to explain. Every outing lasts just a little bit longer than it should because I get stopped up at least once every time. :)
    Oia is an amazing little girl...and I am in love with that beautiful ponytail and adorable smile!! Her brace shows how far she's come, and if it acts as security at the same time, good for it! On the other hand, one day you'll be so happy that she wont need it anymore. :)
    Love the picture.

  2. I can relate. My whole body tenses as strangers catch a glimpse of Nathan and take in the whole picture. I watch their every move, eyes scanning, processing etc. Its a bit exhausting to say the least.

  3. Mostly I still have mixed feelings about the brace. In some cases I'm glad it's there to answer questions for me but sometimes it just seems to bring up questions that I don't feel like answering. Like you, I'm very grateful for what it does for our kids...

  4. Yes. This is why I love the wheelchair--because it answers questions without having them asked. Because it lets people know who we are. And like you, I think I am proud of who and what we are.

    Great post!