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

Friday, April 27, 2012

Happiness is...

Flip flops. Girly shoes. They've always been off limits. But still I'd always look, or glance over the selection quickly, just for a second. Then I just walk on because I know better. I know that the strategic layers of supportive tennis shoe, over brace, over sock, is what allows Oia to safely get from point A to point B. Flip flops are an injury waiting to happen, if they even stay on. But the itch to try them, even if it's not the most practical idea, gnawed at me this particular day. Oia's mobility and functional level are better now than ever and maybe, just maybe, we could swing something a little more daring. But, I happen to be the epitome of practical and my idea of purchasing something like this was not. I stood there amoung a wall plastered with such silly shoes and silently contemplated the pink pair I just pulled from it, and unsure of what to do.

I looked down at my blondie. "Hey Oia, do you like these shoes?" I hoped she'd just answer no. An answer of no would be enough to justify their return to the rack and we'd mosey along without them. Instead, she said yeah and excitedly took them from me. And she wasn't giving them back. She seemed a bit tickled with the idea. Great. Deal sealed. They were coming home with us and we didn't even try them on. "I'll save the reciept" I thought.

Once we returned home and in the comforts of our own living room, we helped her slip into her new shoes. Her first ever pair of flip flops. Her pale, dainty feet and ankles were still covered with slight impressions of sock and brace, but her orange painted toenails that we rarely see poked through so sweetly. I imagine how naked she must of felt in them but how good at the same time. Perhaps they even felt a little weird? She wore them for a short time around the house, stepping softly and carefully. Smiling and looking downward. Then she sat to play with them, slipping them on and off a time or two because that alone was fun to her. Then finally she tossed them aside before returning to the comforts of her worn-in tennis shoes.

It's now days later and those little flip flops remain in the same place, beside Rob's chair in the living room. Maybe she'll choose to wear them again ~ to the pool, around the house, or on our deck during water play ~ but if not, it's okay. Either way, happiness is simply catching a glimpse of them in the corner of our living room where they wait to be worn again, instead of hanging on the rack at the store where they were once off limits.

Monday, April 16, 2012

Field Trip Fun

Today we spent most of the day with Oia's preschool class on a field trip to the Children's Museum of Richmond. By "we" I mean the whole family. I asked Rob to join us for the day and he abandoned his busy work load and made it happen. A good Daddy, no doubt.

The CMoR reserved the day for visitors with special needs. I am thankful for and appreciate such accommodations. The crowd was minimal and the day was very enjoyable. Lots to safely climb on, pretend with, "drive", explore and touch. It's was right up Oia's alley.

Our busy body roamed the place like she owned it. She led while I followed, and did my best to keep up. She needed no coaxing to try something new or to venture in a new direction. She was up, down, in and out of structures with very little help from us, if any at all. She has come such a long way. Will the awe I feel for this child ever wear off?

And not to be left out...

Lil' sis, who was so good the whole day, got to do some exploring too. And she thoroughly enjoyed herself. She's the other pint-sized individual I stand in awe of.

Monday, April 9, 2012

Easter, Kindergarten, Bracing, and a Note Worth Sharing

Easter weekend was short and indeed sweet. Esme's first Easter. Oia's first Easter reliantly roaming the yard in search of Easter eggs. No assistance. No falls. No fear. And fast. This weekend confirmed that a summer outdoors is going to be a whole new and fun experience, for all of us.

Without going into too much of the boring details, the decision has officially been made to allow Oia one more year of Special Ed PK (as opposed to allowing her to enter Kindergarten in the fall). I only had to roar a teeny-tiny bit and fortunately no one on Oia's IEP team objected to my stance. Thankfully so because it was a stance from which I was not backing down. Oia, who is a globally delayed child, still needs and deserves one more year in the PK environment to grow and development in an attempt to strengthen her foundation and lessen the gap between she and her peers. Gaps, per se, don't bother me as it is about finding Oia's personal best, but if one more year of preschool helps her rise to the standards that are expected of a 5 year old entering elementary school then I'm all for it. The physical, social, expressive, and academic gains that she has displayed within the last 8 months have simply amazed me. It's proof that the current PK setting is beneficial to her. I have zero doubts that one more year in PK is the very best decision.

Bracing. It's a constant evolution and experimental process for us. For roughly a year and a half, Oia's bracing has solely been for the right foot and leg(SMO and KiddieGAIT) while the left foot was orthotic-free. But in this amount of time, the left foot has significantly inverted so an SMO is now needed. It seems to be working. Now that the left foot is better aligned, we are comfortable with removing the right side KiddieGAIT and experimenting with just SMO's. The adjustment has been seamless and it seems as though Oia's walk is not reliant on the aid of the KiddieGAIT so we've shed it altogether. Present day, Oia is just wearing her SMO's, or "glass slippers" as we call them, and ambulating beautifully. Watching these bare, skinny legs as they carry our little Miss wherever her little heart desires is something I will never allow myself to take for granted.

Today I recieved an email from Oia's vision teacher that I felt was worth sharing. I don't want my words to muddy the ones in the email so I'll leave this short and sweet. All I will say though is that what's (almost) more remarkable than the message in the email is the fact that someone actually thought to take a few moments out of their day to make mine... to graciously highlight a bit of good found within my child. Today, this made me do a little more than just smile:

Hi Mo,

I saw Oia today for about an hour. I just wanted to tell you that since she was out the last two times that I came to see her, it had been awhile. What an impressive improvement overall! I know seeing her everyday it can be hard to see all the little changes, but what I saw today really impressed me! She said several words so clearly, her motor skills, attention, and lack of prompting were all noticeably different. I really think another year in PK will put her right where she needs to be for elementary school. You do such a great job with her! WOW!

Proud? You bet I am.

Sunday, April 1, 2012

Tulip Farm

I'm a sucker for flowers. Stargazers and Tulips are my weakness. Plop me in the middle of a sea of blooming tulips and I'm in Heaven. Today's visit to EcoTulip Farm was the perfect way to spend such a gorgeous, spring Sunday as a family. We took tons of pictures, picked our own bucket of tulips, ate a picnic lunch, and soaked in all the charm that such a tiny tulip farm has to offer. Enjoy our day in pictures...

"Just living is not enough... One must have sunshine, freedom, and a little flower." ~Hans Christian Andersen

Disney Live!

I know there are countless of parents out there who wished their kiddo didn't watch so much TV. But, I admit. I wish my child would simply slow down and sit down long enough to watch a cartoon in its entirety. Actually, if she just slowed for 10 minutes I'd be happy (although for a child with CP, I realize what a blessing this is). But NEVER has my sweet Oia done such a thing. So, when I suggested to Rob that we should take Oia to a local performance of Disney Live! Three Classic Fairy Tales, I felt a little out of my mind as such shows are generally over an hour long.

It's one of those you-never-know-until-you-try kind of things and Rob was game. But first, I knew our seats had to be good and close since its safe to assume that Oia's visual impairments play a role in her attention span, or lack of. I called the venue prior to ordering tickets. I explained Oia's needs and explained that the proximity of our seats to the stage could determine the quality of Oia's experience. We were offered 8th row on the floor. Quite close. I was hopeful this would be the perfect ticket (no pun intended) for a quiet and still, fully engaged, mesmerized Oia. And it was. For all of about 5 minutes.

Despite talking up the show in the days prior, she wasn't that into it. She clapped a couple of times and jumped with a few loud noises but quickly lost interest. Socializing with the faces that sat around us and climbing the steps of the arena were her only interest. I wrestled to keep her in my lap while Rob held Esme ~ who by the way ~ was the quiet, fully engaged, mesmerized one. We left at intermission. Oia was over it and the tighter I squeezed to contain her busy little body, the more frustrated she became. What do ya' do?

The only picture I got of the girls decked out in their princess shirts was this one after we got back to the car (sigh). We tried. Looks like we won't be heading to Disneyworld anytime soon...