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

FIVE

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.

Tuesday, July 31, 2012

This, That, and Happy Day

We, the big Sis and I, are in full swing with a little game I call Oia, will you puh-leease pee-pee on the potty? I don't really care for it much but it beats the alternative. I'm on a mission to get this girl fully potty trained. We are about 3 weeks in and going strong. And she's doing it. She is more ready now than she ever has been.

I've toyed with this game a number of times before. But my approach this time? Cold turkey. No more Pull-ups. Even if it means I'm changing wet pants 18 times a day, we are not going back and there is no turning around. Thankfully, it's actually going pretty well, meaning we have more dry days than wets ones and each day is getting progressively better. It started out pretty rough but now, at most, I'm changing one accident a day and we have left the house for a quick errand or a stroll in the neighborhood on multiple occasions and Oia has returned home dry every time. School resumes in a little over a week and she will waltz into her classroom wearing her big girl undies. I'm sure there will be accidents but these are to be expected for a while. I'm proud of her. Actually, I'm proud of us. Those who know my sweet Oia well also know how hard-headed she is. Potty training wasn't going to work until SHE wanted it to, no matter how hard I would have pushed before.


In other news, there has been some change to Oia's therapy schedule. We have begun private OT sessions and this has now been added on an every other week basis, which means we are now alternating weeks with PT. Previously, Oia has had PT every Tuesday and no OT. It's all about balancing the needs. Hopefully, OT will help refine some academic skills such as cutting, coloring, writing, opening/squeezing glue bottles, using glue sticks, etc. and overall right arm/hand strengthening. All these things Oia wants to do and enjoys trying to do but is not really that independent with any of it. I hold high expectations in the OT department... and hope we aren't being to lenient in the PT department.

And in more exciting news, Oia's expressive language is moving right along. Our trip to the Kaufman Children's Center in Michigan has been the best decision we've made in a long time. Hands down. The K-SLP is slowly allowing us to chip away at the apraxic wall Oia faces every single day. We script all the time. Oia repeats everything we say, with at least an approximation. And she enjoys doing it. It's lovely. She still loves to read the workout book each day and wants to read it for way longer than I have patience for. I'm so appreciative of the fact that our ST is learning the technique as best as she can by watching our videos from camp and borrowing our cards and workout book for our sessions. And the best part of all... when her ST says to me after each session is over, "She. Did. Awesome!"


And the proof of progress happens when you least expect it. In preparation for Esme's first birthday on July 20th, we practiced and scripted Ha-pee Bir-Day over and over again. On the evening of Esme's party, the 21st, I was getting ready to put Oia to bed. I found her standing in the kitchen holding and examining the box that the cupcake stand came in, and after noticing I was standing there watching her, she looked up to me and said Happy Day. Oh, happy day it was... I live for those spontaneous words from my almost 5 year old. And what's even better than that? The birthday wish Oia was able to communicate to Rob whose birthday followed on the 29th... a very clear and cheery Happy Day, Daddy!

Yep, best birthday present ever.

Friday, July 20, 2012

9:33am

One of my greatest pleasures of being a mother is seeing the innocent smiles that surface on my girls faces each morning. They always wake happy. Always. Messy hair, eyes still sleepy, but emerging smiles shine bright. Best feeling ever. Today, I was especially eager to receive my morning smiles from our tiny Esme' as it was the morning of her very first birthday.


I kept eyeing the clock all morning. The girls and I played on the floor but the countdown to 9:33am was on. I wasn't going to let that minute, the very minute Esme was born exactly one year ago, come and go without notice. Or reflection. It would be just 60 quick seconds but I was determined to savor all 60 of them.

With Esme playing on the floor in front of me, and Oia beside me, and all of us still in our pj's, 9:33am came. Oia and I cheered and clapped and Esme mimicked our excitment. I said Happy Birthday to Esme way too many times while lathering her sweet neck and cheeks with just as many kisses. My happiness and gratitude in that single minute flowed over in the form of a couple tiny tears. Second best feeling ever.

And Rob, who was out of state for work this morning, was apparently thinking the same thing as I. Although focused on meetings, 9:33am stood no chance of sliding by him either. His text to my phone at that exact time read "Happy Birthday, Esme". We weren't all here together, but together we thought of and celebrated our Esme at the very moment she made us a family of four. She sure is something else, and her big Sis thinks so too... and it's hard to fathom that now she's already one year old. What a neat year it's been.

Happy Birthday, sweet Me'Me'... We love you dearly, little girl.

Tuesday, July 10, 2012

To the Beach

You know you're livin' the good life when the toughest decision you have to make in a day is whether to go to the beach or the pool. We had about 6 of those days in a row last week and let me tell you, it was nice. Really nice.


We spent the entire week as a family vacationing in South Myrtle Beach, SC. Our dear friends, the Hampton's from NC, invited our family to join theirs. There was plenty of room to comfortably accommodate our party of four and their party of five in their ocean front condo. I anticipated a fun but tiring week, although vacation, due to the packing, hauling, unpacking, wrangling of children, and whatever else traveling away from home requires with two small ones, but the week was truly the opposite of tiring. It was downright relaxing. Wake up, eat breakfast, make the toughest decision of the day and then stay there until mid-afternoon. Return to condo, eat a late lunch, nap if needed, cook dinner, repeat. Awww, the good life.


Oia did awesome navigating at the beach, or "beap" as she pronouces it. We bought her a pair of Keen's just days before we left with the intent of them being her water shoes. She wore them well (sans SMO's) while playing along the shore. These protected her toes from dragging in the sand, as her right foot sometimes will do. Sometimes though, she did roam the shore barefoot but she mostly wanted her Keens on. The sand was not an obstacle for her and she tolerated the waves well until they became knee deep or higher, which at that point she required a hand to hold from one of the adults. But overall, she was fearless about the ocean. Wanted in, wanted to jump over the waves (which required max assistance), wanted to run into the water, wanted to turn around and run out only to run back in again... over and over and over. Last July she was at the tail-end of post-op recovery, and this July she's rompin' in and around the ocean. Love to use these little experiences as our dipsticks to measure and highlight her progress.


And Esme. Her first glimpse of the ocean. Her first taste of salt water (and sand). She, too, loved it. Pure baby bliss. And when naptime arrived, she and I would venture for a brief walk with the double jogger along the shore where she would zonk out in seconds for a decent and peaceful nap. Probably one of the daily moments I enjoyed most about our trip. My walks, her naps. Precious times.



Of course, I took more pictures than one person should ever be allowed to take in one week. But, put me with 5 cute kids along the ocean and I just can't put my camera down. Memories. I have the need to capture them all...









To Chad, 'Gita, 'Nola, Taft and Collens, Thank you for a wonderful week of friendship, fun, sand and sun. We've been blessed. Until next time.