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

Friday, April 2, 2010


Exactly 2 years ago today, Rob, my father, myself and Oia, all sat in the coldest, eeriest, most unwelcoming room we had ever step foot in. My gut told me all day long that this particular moment would be one that we'd never be able to forget for I knew the experience we were about to endure would not be a good one. In fact, I knew it might just even be painful.

And I was exactly right.

It was Wednesday, April 2, 2008. With my heart pounding and my mind racing, an innocent 7 1/2 month old Oia sitting calmly in my lap, and with nerves that rendered me speechless, I waited for the neurologist to enter that lonely room at UNC. Rob seated to my left, my dad seated across the room to my right. No one really spoke...too busy wondering. It felt like we were filling in for someone else's appointment with our own child; like we had been given a script to follow and perform as the whole situation was surreal. I was feeling misplaced and vulnerable because at that moment, I was not in control.

I don't remember all the details of the appointment but I certainly remember way more than I wished I did. The neurologist handed us a couple diagnoses along with a grim future and low expectations for our daughter's future. I questioned whether this man even had a heart. He seemingly dropped all optimism at the door before he walked in to hand us the life-altering news. We arrived at this appointment with a sweet baby who simply had a fisted hand and left with a palsied, mentally retarded, globally delayed, quadriplegic daughter. Those cruel words that then described our new reality still echo in my head to this very day.

I recall feeling cheated and mad. Mad because my innocent baby didn't ask for this nor did she deserve it. I came to realize that day that Oia's life was going to be a constant challenge, a struggle, full of hard work and broken hearts because words do hurt. It was not fair.

Rob and I have re-visited Diagnosis Day on occasion during our intimate conversations about our life and Oia's. It's never a warm place to return to but somehow it sneaks its way into our discussions from time to time. We allow that day to be a reminder of where we have been and more importantly, were Oia has been. Knowing where we started and tracing the path that lies behind us makes the present seem more gratifying, so remarkable, so miraculous, and so, so delicious.

Today, Rob and I are stronger individuals than we ever imagined we could be. We see life and children from a different perspective. Our view is beautiful. We savor Oia's accomplishments, her milestones, often her inchstones, and appreciate the determination and physical strengths it took for her to achieve such a triumph. We take nothing for granted, not even for a moment. Our eyes are wide, our hearts are overflowing, and our souls could not be happier. That "palsied, mentally retarded, globally delayed, quadriplegic" daughter of ours is changing the world right before our eyes and we feel honored that she decided to start with us, her parents.


  1. Oh MO! What a heartening story. To be reminded of the bad forcast but to get to see that rainbow of a miracle in Oia! It seems like we are all united in bad diagnosis stories but also united in our miracles! She is such a wonderful miracle and you are blessed to get to witness it. Things you will never forget and never want to!

  2. beautiful...and hits very close to home :)

  3. Oh my gosh. She is such a gorgeous, fantastic child--I can't imagine anyone ever saying that about her. I guess they just ahve to give us that horrible stuff up front. Blah:(

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  5. Your post is an encouragement to me b/c the doctors do not give me any hope for my daughter. I hope one day Samantha will have the same great results as your daughter. She looks great and I hope so glad she proved the doctors wrong!!! Thank you for sharing your life on this blog even though you do not know me.

    God Bless,
    Nicole from Rosemead, CA

  6. You guys are lovely, just plain lovely, all three of you.

  7. I haven't known you for very long but I can tell you're, Rob, you & Oia, are awesome people. Awesome people get to have awesome lives, which is exactly what you have.

  8. I can only imagine how hard it was to hear the diagnosis. The doctor may have came across heartless, but look at the bright side... It makes Oia's progress feel that much better because you have proven him wrong!!!

    We love you guys!