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

Sunday, February 27, 2011

Music to Our Ears

I'm not sure at what age a kiddo develops the ability to push air from their mouth, or blow, although I know it's fairly early. I know this ability falls under the umbrella of oral-motor control and speech so I've never been alarmed that Oia couldn't do such a thing as blow bubbles, birthday candles, etc. However, with enough encouragement, practice and musical instruments scattered about this house, she has finally mastered the skill well enough to play her new harmonica... and the sound is far from annoying as it's the sound of more progress. This girl is proud of her every squeak and so are we.

Sunday, February 20, 2011

SuperNanny Knows

We have begun making a few changes to Oia's room in preparation for what's to come this summer. Until just one week ago, Oia was still sleeping in a crib. Since we were fearful of her standing inside it and perhaps flopping over the rails, we literally just placed her mattress inside the crib frame on the floor. Essentially, the crib acted as the ultimate toddler cage; she couldn't get out and she never even tried. Bedtime and naptime in the crib was a piece of cake and I hated to fix what wasn't broken but the fact of the matter is that Oia was getting too long for her crib and the crib will soon have a new occupant.

Onto the next chapter... a "big girl" twin bed accompanied by what I knew would happen; a fight at every bedtime.

Oia will not, I repeat WILL NOT, fall asleep in her new bed without one of us laying in bed with her. I understand we've rocked her world by taking away something she felt comfortable in so I'll accommodate her for now. However, she has even begun waking in the middle of the night, crying out for us, and walking down the hall to our room. Again, same situation. She will not fall back asleep unless I lay with her once she's placed back in her bed. This behavior is new for Oia. She's a great, sleep-through-the-night sleeper.

You can call it lack of patience, I prefer to call it structure, but I'm not willing to deal with the middle of the night wakings by laying with her until she falls back asleep. I need sleep too, in my own bed. So, I resorted to the SuperNanny tactic, you've at least all heard of the show.

Here's the scenario:
Kid wakes and cries and crawls out of bed.
Parent picks up kid, puts kid back in bed, walks out.
Repeat. Over and over and over again until kid gives up and parent wins, no matter how long it takes.

Sounds easy but I assure you it's everything but that. That was the scene at our house Friday night. I felt ready to tackle the beast at 3:27am. Oia woke, sat up in bed and cried. I came in, laid her back down, covered her up, walk out. She cried, sat up again, crawled out of bed, I entered her room and put her back in bed, then walked out. It seems brutal and after 30 minutes of this dance, I was determined to not give in but it felt like no end was in sight. Oia gave it her best shot but after all the crying and fighting to get out of bed, she worked herself into extreme exhaustion and just couldn't do it any longer. Her surrender came exactly one whole hour later after a minimum of 35-40 attempts to escape her bed.

I felt victorious but I knew the true test would be the following night, if she was to wake up again. And she did. She sat up and cried but never tried to get out of bed, just waited on me to enter the room. This happened just 3 times in a row which took only about 2 minutes as opposed to the previous night's ordeal of the one grueling hour.

Around 7:30 or so that morning, I woke to the sound of her shuffling down the hallway into our room where she headed straight for my side of the bed wearing a big smile on her face. Thank goodness she still loves me.

I'm calling it success and sweet dreams for all. No SuperNanny needed here (at least yet anyways!)

Pictures of Oia's bedroom re-do coming soon.

Monday, February 14, 2011

Happiness is...

...believe it or not... when you walk your child to her classroom, help her put away her coat and backpack and turn in her folder, smooch her forehead and wish her a great morning, then she motions towards the door for you to leave.

It's called progress, people. My girl is just growing up.

Tuesday, February 8, 2011

The Second Time

For the most part, I'm a girl who loves being pregnant. I had a fabulous first pregnancy with Oia. I had not a day of morning sickness, but a little fatigue which I attribute to working full time, not to pregnancy. I continued my workout routine with a trainer well into the sixth month and still remained very active until the day I delivered. I was an easy patient. Boring really, as everything progressed perfectly. My days were easy and full of giddy anticipation as we spent our free time trying to imagine who was growing inside of me. The gender was a mystery as my belly grew and grew and after a smooth, textbook delivery 40 weeks and 5 days later, our sweet Oia made her grand entrance into a peacefully quiet delivery room. It was the best nine months of my life.

The subsequent 9 months, however, were not. We felt brutally thrusted into a foreign world where we were expected to live forever. We landed in a world laced with scary vocabulary, fear, dread, anger, despair, tears and broken-hearts. I blame those subsequent 9 months for the fears and anxiety that have robbed me of the sheer bliss I'd like to be feeling again during this pregnancy. But for me, pregnancy will never be the same.

Am I thankful to be expecting a second child? You bet I am. I'm over the moon excited. But, the diagnosis of Cerebral Palsy secondary to Schizencephaly that will forever be a part of my daughter, and therefore this family, has stolen my innocence and permanently changed my naive ways. I feel vulnerable to what may be waiting for us around the corner... a healthy baby or another angel with needs?

Only time will tell and I'll count it as a blessing either way but the wonder never leaves me. For the sake of the child, every parent remains hopeful for optimal health and well-being and I'm certainly no exception.

This time pregnancy has been wildly different than my pregnancy with Oia, not only emotionally but physically as well. Oddly though, this is where I find some peace and comfort. Today, I am 16 weeks pregnant. There has not been a day in the last 16 weeks that I have not had at least one pregnancy symptom or another. I've prayed for pregnancy symptoms this time around as a sign, a way to assure me that this time things would be different. Crazy, I know, but it is what it is.

That old saying Be careful what you wish for holds true here. My face is a wreck, my back hurts, headaches frequent me and all patience have left me. I'm still so fatigued, unmotivated and my husband would chime in that I'm a bit irritable aka hard-to-live-with, and for the first 12 weeks I was on the edge of nausea around the clock while eating us all out of house and home. But through it all, it is what I asked for. It's become my peace, my sign, and I'll take it. It's not a guarantee by any means, but it is an answered prayer thus far.

Photo of Oia on her birth day, only a couple hours old. Since then, we've been forever changed.