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

Saturday, January 28, 2012

Happiness is...

... a lot of things. It's finally having a moment to sit down and reacquaint myself with this blog. It's having a husband that works his hiney off so that I am able to stay home and man the family ship and not miss out on a single moment. Some days though, I'd like to opt for a co-captain er, a nanny. Particularly so at any hour of the night when my high-maintenance, yet oh-so beautiful 6 month old wakes for the 4th, 5th or 6th time. Every night. She never misses a beat. That, my friends, is not happiness. Although she'd beg to differ...

Happiness is scribble that's slowly turning into an "O-i-a". It's not pretty (yet) but who says signatures have to be? For Oia to stabilize her paper with her less dominant hand and correctly grasp a writing utensil with the other, go "around and stop" to form an /O/, then go "up and down" to make an /i/ is purely an accomplishment. The /a/ is most challenging but she'll learn to perfect it soon. With only verbal cues, our girl has put her name to paper and that's just plain awesome.

Happiness is the ever-growing list of new sounds, words, and phrases that come from the mouth of my 4 year old. With each new word or phrase, I feel as though I'm learning more about who my daughter is. Thoughts are turning into words. Words introduce me to my child. And never, ever do I underestimate the power of a single word.

"I need wheeeeee!" So off we go... to the swing to go wheeeeeee! And "I need go pee-pee!" so off we go to sit for a different purpose entirely!

While pointing up and into the dark sky from the living room window, "Mommy, Mmmmmmm". A child whose visual impairment doesn't stand in the way of her view of the moon, she shows us the big light she discovered high in the sky.

When Esme finishes eating, Oia questions "All done ba-ba?" in hopes I'll answer "yes" so she can take the empty bottle and in turn feed her baby. She's a little mommy, no doubt.

In asking for her glasses, "I need eye", as she closes her eyes and points to one of them. It's a remarkable request coming from someone who only ripped them off countless times a day as an infant.

Happiness is a week of warm, 60+ degree weather in the middle of January. Stroller-riding, walking, and wheeeeee-ing in the warm, winter sun is good for the soul.

And happiness is found in the space between Oia and Esme. The space between them is my dream come true. Really. I wanted so badly to have a second daughter long before I became pregnant with Esme. I imagined an older Oia. An Oia who would need a best friend, no matter what. An Oia who had come home from a really awful day at school, maybe feeling lonely. Maybe feeling down about being different. Maybe feeling the need to vent about what hurts, physically or emotionally. Maybe feeling the need to simply share a joke, or a secret ~ with someone other than mom. Maybe feeling overjoyed of a recent achievement, bubbling inside to share it with someone who truly cares. A sister. I knew she needed one. Esme needs Oia too. I really believe these two ladies were made to compliment one another. Many heart to hearts, good cries, laughs, and memories await them. In fact, the laughs have already begun... and that's true happiness.

Wednesday, January 11, 2012


A little over a month or so ago, after Oia's nightly brushing, Rob noticed Oia had a cavity on one of her left bottom molars. The cavity seemed to happen over night but it was quite noticeable and even discolored. We suspected that this cavity could have been the cause of those inconsolable crying spells that occurred a few weeks earlier*. So the following day, I took Oia to her dentist to take a look and she wouldn't allow the dentist to get a good peek. Obviously, the consensus was that the tooth needed fixed, and since this girl does not tolerate dental appointments well, I had to schedule her for admission into UVA for dental work under general anesthesia. That lovely procedure took place yesterday morning.

While under anesthesia, the goal was to x-ray her teeth, clean them, apply sealant, and fix any and all cavities. We went in there knowing that she had one cavity and a congenital defect of another tooth that needed to be checked out. Half way through the procedure however, the dental team called to say that they found more cavities and it would take them longer than expected. So 3 hours, 3 caps, and 6 cavities later, we were finally called back to recovery. One would think after hearing that news that a toothbrush never entered her mouth on a daily basis but I assure you one does... and often times more than once a day. AND, she's been going to the dentist regularly for about a year and half now with no concerns.

But I must say, the risk factors have been stacked against us. Oia has low tone in her mouth, hence the drool. Therefor, she doesn't clear her mouth of food and drink as one should be able to. She often times is unaware when sticky foods are stuck to her teeth. Dentist said that the enamel of Oia's teeth is soft so having both of these factors on board just leaves the door wide open for dental decay. Joy. We found out the hard way.

But even after knowing all of that, I still feel sick about it. Like I'm a horrible mommy kind of sick. Her teeth are our responsibility... and look what happened. Shiny metal caps are NOT supposed to be a part of my child's smile. Can I look on the bright side and say that at least these teeth are her primary set and she'll one day get all new teeth? That thank goodness teeth can be "fixed" and that the caps are in the back of her mouth? It doesn't really make me feel any better but that's what I'll keep telling myself.

So, I guess we eliminate some juices and replace them with waters and just be more mindful of the foods she eats. I refuse to eliminate certain foods from her diet though simply because of sugar content. I'm not that mom. She is four and has a love and curiousity of all food types and I love that about her. I'll just moderate but not eliminate... poor girl. She handled the whole day in true Oia fashion ~ like the trooper she is.

*And a little fyi... none of the cavities effected the roots of her teeth therefor none of them should have caused any pain or ache. Crying spells still a mystery but none have returned.

Tuesday, January 3, 2012

Reflection and New Year

Happy New Year. Remember me? I'm here, barely. It's been since July that I've slept through the night and I feel and look as though I've aged nearly 10 years since I found out I was pregnant just 14 months ago. I keep telling my husband that a little sand, some sun, and a warm ocean breeze would work wonders on my spirits, not to mention my looks, but he's not buying into it. I'll chalk it up to unconditional love.

Anyways, life has plopped us into 2012. And I'm so glad. 2011 looks really nice in the rear-view mirror. It felt like a rough 365 days. High risk pregnancy, questionable health of our unborn baby, the sudden and tragic passing of my dear Doberman, Oia's surgery and a consuming summer therapy schedule were all bumps in the road. But, silver linings do exist and they were always present when I remembered to just stop and look for them. Life is good like that.

The toughest decision we made in 2011 was to have Oia undergo lengthening surgery while I was nearly 8 months pregnant. To date, it's been the best decision we've ever made for her. And trust me, we've made a lot. Cutting her hamstring and Achilles tendon did more than just release the tone in her leg... it provided our girl the freedom to be, to bloom with some ease. CP still does and always will have a mark on our girl but moving around post-surgery without having to fight muscles does wonders for a developing 4 year old. Oia's tolerance for the surgery, the recovery, and for the summer of subsequent therapy simply amazed me.

The absolute highlight of 2011 happened on the morning of July 20th as we became parents all over again. My pregnancy was riddled with fear, anxiety, and tears of all kinds. But in the end, our sweet baby Esme is proof that prayers can be answered. Born with a heart as unique as she... the most beautiful, alert, brown-eyed baby we've ever seen. To think she's all mine, all ours ~ it just baffles me.

There have been ups and downs over the last 12 months but no life would be complete without either. I am here, able to reflect, able to look back. Looking back is only possible if you've been fortunate enough to make it through. And that I have. With all the strength and wisdom another passed year provides, I move on a better person and into 2012 as the blessed mommy of two extraordinary girls and as the lucky wife to a man I don't deserve. 2012 will bring great things to this party of 4. I will make sure of it.

Photos by Kari Davis Photography, October 2011