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

Friday, August 31, 2012

Message of Hope

About two years ago, I voluntarily submitted material for a video project in the making. To my excitement, I received word via email today that the project is finally complete and now public. It requires no further explanation...

Wednesday, August 29, 2012

The Birthday Party

When I began thinking about planning Oia's 5th birthday party and picking a theme, if any, the only thing that repeatedly came to mind was "bright and happy". "Bold" even. Oia doesn't live and die for any certain movie/cartoon character, or Barbies, princesses, etc ~ you know, most kids love something. But honestly, she could just play with her favorite babydoll all day long or better yet, shadow me every waking moment as my little not-so helpful helper. No girlie themed party would suit Oia's personality but all things bright, happy, and fun would. She's a girl who lives her life in bold, always seeking fun, so with my head full of colorful ideas, I went with it...

Think all shades of the rainbow. Bright like tie-dye. That's Oia.

Her party was Saturday. Unfortunately, the rain forced our originally planned outdoor party inside. The outdoor activies we had planned for the kiddos could not be done in the house with me as a conscious participant so we had no choice but to treat our guests to nothing but the best ~ our lovely garage. The last minute Plan B had me a little flustered at first but we pulled it off anyways.

As the rain began to fall that morning, I sent Rob and Oia out for the pick-up of cakes and balloons and while they were out, my sister and I quickly worked our magic on transforming the garage into something a bit more party friendly. We had a kid sized picnic table covered with white butcher paper where kids could sit and create with markers or paint. We layered the table with multiple sheets of paper so once one sheet was full, we could tear it off and start anew. Simple. Even the babies liked it...

Another activity was along one side of the garage. We hung a white king bedsheet that served as a canvas for kids to spray paint with water bottles. Fill a spray bottle with part water, part tempera paint, then allow kids to spray or squirt away. Perfect for tiny Picasso's in the making.

For the water lovers, we filled one of our kiddie pools with shallow water. Then we allowed the kids to each have a frozen water balloon (or 2 or 3!). The object ~ tear open the balloon and melt the ice away from the treasure that was frozen inside. Kids got to melt the ice by rolling it in the water, by blowing on it, or by rubbing it in their hands. Some even thought to crack the ice on the ground to get to the treasure from the middle a little faster. It definately kept them busy for a while.

But the party's main event was T-shirt tie-dying! Remember I said bright and happy, right? I was so excited to do this with the kids. It was on my summer's bucket list for Oia and I to do together but in all reality, tie-dying is for multiple shirts at once so what better time than at a kid's party. I provided all the materials necessary for each kid to dye their own shirt. I love the symbolism; 10 kids, all as uniquely different and special as the shirts they created that day. Everyone did a great job, listened and followed directions, and very little mess was made.

First round of kids dampening their white shirts in warm water:

Shirts soaked in soda ash, rolled, rubber banded, and ready for dye:

Elena carefully planning her masterpiece:

Natalie getting a little help from her mom:

Once the dye was applied, the shirts were to be left undisturbed for at least 12 hours before rinsing and washing. We sealed the kids shirts in a plastic bag for safe travels home and provided them with take home directions. Since the party, we've seen some of the finished products, and they look awesome!

Cake and ice cream was last for which we headed inside for. Oia felt special, I could tell, during the singing of Happy Birthday. She stood calm for the song, as if soaking it all in. Her smiles were infectious and once the singing of Happy Birthday was complete, Oia voiced the sweetest "Happy Day, Oia" to herself. And she blew out all five of her candles, one by one! That was definately the icing on my cake!

Note the colorful layered cake!

Oia's party was a memorable time for our family. I can't help but feel so blessed not only for the most amazing five year old we have the priveledge of calling our own, but also for the supportive and loving individuals who helped us celebrate the occassion (some present and some here in spirit). I hope they all enjoyed themselves as much as we did. We've filed the day under one of the most memorable birthday's yet and we can't wait to do it all over again next year!

Wednesday, August 22, 2012


At some point, clearly when I wasn't looking, my firstborn was whisked away and replaced with such a beautiful young girl that today I fail to adequately describe. My poor attempts at painting her picture with words, words that do her no justice, only muddy the vibrant and unique soul she is still becoming. She is more than words. More than I am capable of explaining. More than I can yet to comprehend. She's wonderous and mighty. And today, she is five. One whole hand old.

Five is a big deal. Five years with Oia has taken us here, there, and everywhere. Literally and emotionally. But still, not one day has slipped by us in the last five years that we haven't celebrated her or something of her. Each and every day she has worked hard to overcome what most never have to think of. Her victories are hard earned and tackled with grace. Her daily slivers of progress continue to poke through and inspire us. Her progress makes us laugh and cry all at the same time and how wonderful that feels. She's come a long way from that quiet baby who once made me question one of the professionals in our lives, "when will she ever reach up to let me know she wants held?" I barely remember that baby. Seems so long ago.

Oia, I've said it before but I must say it again, no one has or ever will deliver so eloquently the lessons you have taught us thus far. The beauty and joy you bring to our life is more than we deserve and the pride we experience while you walk us through this life is absolutely overwhelming. You are the third in this family of four, wedged so tightly in the middle that should you ever venture out of your independent (ehem, hard-headed) ways, then I guarantee you'll find one of us right beside you. Please reach out for a hand that I promise will be there should you ever need it. We know you'll do the same. Until then, carry on and just be you ~ because you are something else. Thank you for the sweetest of five, colorful, fabulous years. We love, love, love you unconditionally from the very bottom of our hearts. Happy Day, Beautiful!

Wednesday, August 15, 2012

Preschool Year #3

Summer break is officially over and Oia has begun another year of preschool, her third and final year. Technically, this year could have been the "big one", her beginning of Kindergarten. But it is not. She's young, just days away from turning 5. Developmental delays aside, age is reason enough for me to allow her one more year of preschool. One more year of absorbing. One more year of learning peer interaction. One more year of overall development ~ in the safe and familiar environment of her self-contained preschool class. She needs it. I'm calling it our year of cushion. My expectations are high.

This year will prove to be eventful, I am sure. Especially with full-on potty training in the picture. Her day begins with an 8am drop-off (Esme and I walk her into her room each morning). We return around 3 for pick-up, nearly an hour and a half longer than her previous school days because this year I have opted to make her stay for nap/rest time. Previously, I did not. I would pick her up just as the class was winding down for nap and then she would, under great protest, nap at home. Bed is better than mat and dirty school floor in my book. However, now that naps are no longer a part of her day because she simply has refused them shortly after Esme entered the picture, I feel there must be some time allotted for her to simply slow down, stay in one place, be quiet, and REST. Only the structure of school can teach this to her, she refuses for me. This rather simple idea is far from simple for Oia and those who know her well understand this. Learning to rest her mind and body will be a valuable lesson for her and maybe one of the hardest lessons she encounters this year. She has no settings; she is simply on or off. It's a blessing in disguise for an individual originally diagnosed as a spastic quadriplegic. But rest does a body good.

Also, her preschool class has been transferred into another elementary school. The school is huge, to say the least, with hundreds of students. This transfer into a different building brings a different speech therapist. It's the one therapy we are so intently focused on right now, and fiercely adamant that her instruction be specific to her apraxic needs. The adjustment to and the unknowns of a new therapist rocks my boat slightly. It's only day two and I've already requested to meet this therapist, observe a session, and asked that she watch the recorded sessions between Nancy Kaufman and Oia from our week of camp. And at my request, our private ST has informed the new ST of current goals and summer progress post camp at KCC. At this point, I hold no patience for dilly-dallying around when it comes to her language development. We all need to be on the same page.

And so another school year means more of those dreaded IEP meetings, more questioning, more watching, more hoping for perfect situations. I dream of nothing less. It means more progress, more growth, more of knowing and learning about our girl, and more celebrating. We will be vocal and wide-eyed all year long, all for the girl who is so sweetly naive to the long road that precedes her.

Tackle it, Oia. Show 'em what you're made of. May your third and final year of preschool be the best yet. We are forever right behind you. And proud of you no matter what.