She Will Ride Many Miles

After a tragic diving accident left James, the son of Nancy Wellons, a quadriplegic, both he and Nancy began their journey into the world of AmTryke Cycles. From their venture into adaptive cycles grew their nonprofit corporation, Wheels on the James of Lynchburg. Since the two began in 2011, they have been able to provide over 90 cycles to deserving individuals with a physical challenge that prohibits them from riding a traditional bike.

Obviously, Oia is among the physically challenged. She/we have tried, over and over and over again for a long time, to ride a traditional bike. Even with various bike styles and modifications to the traditional bike, the challenge was too great for her. And dangerous. Oia sensed her own instability and often gave up. But, thanks to Wheels on the James, Oia is now one of the over 90 individuals who not only can safely sit atop their own adaptive cycle but can ride it, too.

To my 6 and a half year old, that's life changing.

I remember my first bike. The light blue bike with a light blue banana seat and high handle bars. I have memory of it shiny and new, being held up by the kickstand inside our garage, as we waiting for a snowy winter to fade and warmer spring days to emerge. I also remember the sense of independence and pride that bike gave to me once seated on it. It was my, MY, vessel from where I had the power and freedom to make choices of my own destination. It allowed me to roam carelessly throughout childhood while developing a healthy sense of confidence. Every now and then I'd kick my legs up or let go or seek a downhill ride. All because I could. And just for the thrill of it. I remember that feeling. And to know that Oia is getting a similar taste of something so sweet and so powerful to her developing young mind fills me up in a very good way.

The new cycle has been ours for just 3 days and for now, it lives inside. There is no time to wait on winter to fade away to warmer days as the wait for her to ride a bike of her own has been long enough. With a few smaller pieces of furniture pushed aside, there is a perfect track looping the downstairs of our home where Oia now rides, every morning before and after school, around and around and around... followed and slightly pushed by us. With just a short amount of practice, she has learned to propel on her own the length of a room. The first time I felt the guide handle pull from my hand and realized she was slowly inching forward on her own felt no different to me than the day she took her first independent steps. My eyes that well with happiness begin to overflow when my tiny, yet strong 6 year old looks up from her new bike and flashes the biggest Of-course-I-could-do-it-Mom! smile. Those are the prettiest of all her faces.

Thank you, Nancy, James, and Wheels on the James. Your selfless hearts are made of pure gold. Our summer just got more fun, because of you. Family bike rides are in our future now and biking at the park, with friends, is in Oia's future. No more watching. No more saying I wish we could find a bike that Oia could ride. You have provided our daughter, as well as many others before her, with a lot more than a bike. A whole lot more. And we are so very thankful. With each mile behind us, we will think of you.

Righting Righty

From the age of 9 months on, our girl has worn some form of a "dancin' shoe", "boot" or "glass slipper". The need for such orthotics has never changed but the function of each pair over the years certainly has. All that is missing from the following picture is her KiddieGait, which is a form of orthotic that can be handed-down once out-grown. We gladly passed it on.

Seems we are in a constant battle with Oia's tight right calf muscles. There are brief periods of time when we think we've caught up in the game with Botox or casting but the spastic Beast is really bigger than us. Our December bout with Botox followed by casting made very little gains to Oia's dynamic range but from a passive stand point, she is more relaxed. At least a little bit. In English, her ankle can be stretched and held at a neutral position of 90 degrees (while stationary) with relative ease. However, when in motion (walking or running) she is still positioned on her toes. The prolonged toe-walking, due to pulled and tight calf muscles of the right leg, has slowly worked her ankle into a precarious position. It's something we have been watchful over for a very long time.

Typical stance. Weight shifted to left side, flat left foot. Right heel up.

Typical right ankle position, sans AFO. Poor thing. Righty bears very little weight while stationary. (Left heel is slighly raised here only because she is reaching for chocolate.)

That poor ankle looks like a broken ankle waiting to happen. I cringe watching her walk barefoot even though I know Oia is in much more control over her body and limbs that it looks. But even still, the time has come for Righty to step out of the lower fitting orthotic and into a more supportive and taller brace. The taller brace doesn't keep her flat, but flatter, and that ankle is snug and more appropriately aligned which makes for a healthy change. And it makes sense. Oia's legs function differently from one another and both are in need of two very different braces to accommodate the need of each. Such a simple (temporary) solution for such a complex little body.

Oia has been using the new brace for about 2 weeks now and in true Oia fashion, she is tolerating it beautifully. Her gait is solid, and more stable now. This change in brace was the right recommendation. Her sweet feet will be in this arrangement of bracing until something changes again... because it always does. It's just a matter of when.

Christmas Break Favorites

Whew. We've been over the river and through the woods, to two grandparents' houses. Virginia to Ohio, and back again. Christmas and New Year's have been celebrated, family visits enjoyed. Car now unloaded, suitcases unpacked, laundry caught up and Christmas decorations neatly packed away until we tear into them again next year. School has resumed, sort of. Our county declared a "cold day" and canceled school just the second day back to reality, then delayed school the next. A first for me. Too cold for school? Um, ok. Anxious for our normal routine to return despite feeling an overwhelming need to make an escape from it all just a couple weeks ago. Breaks are nice. Sometimes routine is better.

In an attempt to make up for my absence here on this little loved space of mine, I leave you with a bit more than a few of my favorite photos from our Christmas break. Sadly though, I did a poor job of capturing my girls with family this time around... Trying to enjoy more of the moment means stepping out from behind my camera and photographing less. I'll continue to work on that balance.

But, here you go.

Rob, Esme, and I shared in the efforts to build Oia her own scooter board for Christmas. It's perfect. It's therapy laced with super fun play for our girl who doesn't really play with toys. She highly approves.

For weeks, Esme told everyone under the sun that she wanted a Caillou doll for Christmas. And a sucker. She could hardly wait for both. The kid almost died with excitment when she unwrapped that Caillou doll but don't you know she hasn't played with him for more than 5 minutes total since she got him. But, I'd still buy whatever toy she'd wish for next just to see this joy.

Cousins Colton, Oia and Callie. Esme wasn't feeling up to a picture at the moment her cousins and sister were. Naturally.

Christmas morning at Mamaw's. Little sister walking her new puppy.

At one point during our stay, Esme was quiet and temporarily missing for a moment. I asked Rob to walk down the hall and check on her. He came back out, grinning ear to ear, and asked where my camera was. There's just something about the way a toddler explores and plays that makes you want a toddler in the house forever. We will never take her imagination and independent play for granted.

Oia with her Aunt B. My beautiful sister. Two peas in a pod.

Snow is something I could live without. And Oia sides with me 100%. Which is why she attempted to catch *a* snowflake before heading back to the door inside. Total time outside? About 60 seconds.

Have sink, will play. And make one helluva soaking wet mess at NeNe's. Their bliss.

And even though I'm not a fan of the white stuff, our Esme loves it. So out we went another day. Precious little pink bundle, she is.

But nope. Couldn't convince this darling to come back outside and play. Not even for all the ice cream or chocolate in the world. She's no fool.

New Year's Eve made me feel especially old this year. I struggle to stay awake until midnight and I can't tell you when the last time hubby and I partied to ring in the new year. It's overrated. I don't care at all for modern music or Miley Cyrus and all her disgusting ways so watching the last 15 minutes of 2013 live on Times Square was torture. What was most enjoyable was peeking in on my peacefully sleeping girls. Both asleep well before midnight, side by side. My night was most complete when watching Oia through the darkness, who lifted her head ever so slightly off her pillow, then peeked through sleepy-slitted eyes over in her sister's direction. Her only purpose was to make sure Esme was still there. And she was. Oia then lowered her head and lifted her arm up and over to rest it on her sister. Then back asleep she fell. Esme never budged. That's what made my night. My day. My week. And my year. The world was celebrating the close of one year and the beginning of another but the world as each of my girls know it was just sound asleep next to the other. I pray their world is always this safe and cozy and full of love.

Happy New Year, friends. I'll be back soon.

Two Things

Tonight, just two things. Oh, there's always more but tonight just two will do.

First. We were able to get Oia scheduled for a round of Botox and casting. The procedure took place one week ago and now just two more weeks remain of the "boot", as Oia calls it. Aside from a very achy first 24 hours, she has done remarkably well this first week. It's never easy to tell the benefits of such a procedure while the cast is still on so it makes us even more anxious for the final removal. Seeing her heel just a little closer to the ground, with her knee slightly straighter, is all the Christmas I'll need.

And second. I alluded previously that there was a "big deal" thing our family might soon be thankful for. Now, it's safe to announce there is. After more than 2 years of Rob diligently yet patiently looking for land that our family could dig our roots into, we have finally found and closed on a 2.5 acre slice of rural mountain land. New county. Better school district. Slightly closer to Rob's work and Oia's therapies. So, onto a private gravel road, over a railroad track, around the bend, and down our wooded lane will soon be a single story home designed with our family's needs in mind. A place where one of our two girls will likely dwell well into adulthood. Or maybe not. But we feel so blessed to have the option of planning for this future now and *I* feel so blessed to have a husband that selflessly provides for our family in great and many ways. Guys, 2014 will be the year to clear some land and build a home! And it will also be the year for making (and documenting) some amazing memories along the way, too!

This, That, and a Playdate

Life is rolling right along. Funny the way that happens regardless of whether the present is good, bad, or status quo. Life goes on and thankfully so. Aside from a few hiccups regarding Kindergarten, it's all pretty good over here. Just a few little things worth sharing...

Kindergarten. I'll keep it in a nutshell, or try to anyways. So as you know, Oia began Kindergarten in a general education classroom which is considered full inclusion. We demanded it be that way with any and all proper modifications. She was set to receive collaborative SPED instruction for 1 hour/day (30 minutes for literacy and 30 minutes for math) in her classroom by a collaborative SPED teacher. With that explained, the school year all along has never felt right for various reasons. Oia's teachers and assistant have struggled to understand Oia and her academic needs and often I'd consider the efforts as weak or minimal. Oia wasn't learning and through my observations, she was just a student led through the motions by mainly the assistant. Staff efforts, in my opinion, fell under the "needs improvement" category. There is nothing "collaborative" about a teacher sitting with Oia at a small table in the back of the room, behind a tri-fold divider. Oia disliked it and her behavior with this "collaborative" teacher was quite defiant. Ultimately, Oia's team proposed to remove her from her general education classroom and place her for all hours of the school day into the SPED self-contained classroom. This goes against our beliefs entirely but after some "negotiating", Rob and I agreed to allow Oia 1 hour of SPED literacy instruction and 45 minutes of SPED math instruction in the self-contained classroom BUT the remainder of her school day must be spent in her regular education classroom (with proper modifications) with her typically developing peers who have now become her friends. The schedule change eliminates Oia's interaction with the "collaborative" teacher, thus part of our deciding factor in allowing some placement changes. Oia has seamlessly transitioned into her new schedule this week and she is shining. Lovely notes are coming home and Oia says she is "happy". Sometimes it's less about the classroom your child is in and more about the people who work with and teach your child. The fit must be good for Oia and it feels right to me, too. We're going with it because when Oia is happy, so am I.

Ortho. We moved Oia's ortho appointment from early in the new year to this week because the tightness in her right leg is currently of great concern. The tightness is beginning to jeopardize her overall stability and ankle alignment. Intervention is upon us and we didn't want to wait until January. We prepared ourselves with the idea that another surgery might be the suggestion, or remedy, to the current tightness. However, it's only been 2 and a half years since Oia underwent lengthening surgery and her doctor says it's just too soon to go through another one again. More surgery means more scar tissue and until Oia is done growing, the idea of surgery isn't necessarily the best one (if it can be avoided). This is the ugly game cerebral palsy makes us play. Grow, get tighter, choose best method to alleviate tightness, and repeat. Right now, best method seems to be a combined approach of Botox and casting (not a method we have done together yet, but seperately). With any luck, we can work in the Botox procedure and the subsequent 3 week casting period all before Christmas. And with any further luck, it will help our girl move with a little more ease and comfort.

A playdate. Our girl had her first one! H and Oia are mutual BFF's and I consider the relationship that these two have as classmates to be a prayer answered. H begged for a playdate with Oia and we made it happen. The two of them got messy making pizzas together that neither wanted to eat because no one was willing to stop playing long enough to take a bite. It was 3 hours of little girl bliss for H and Oia and 3 hours of "Oh my god, I can't believe this is happening but I'm so darn glad it is!" for me. It's a friendship made between two girls who chose to be friends. No family connection, or influence, because of the special needs community we often find ourselves in, but two girls who simply connected. For no other reason than that, they wanted to be friends. And so they are. That's pretty awesome.

So, the Kindergarten kinks have been ironed out (for now), hoping Botox will allow our girl some relief, and in the meantime, we will all just play the day away. We do that well around here. And if all goes as planned, we'll have one kind-of-a-big-deal thing to be thankful for this Thanksgiving. Stay tuned.

Halloween at UVa

Halloween on the Lawn at UVa is always over before we know it, but each and every year we end the night by saying "Man, that was SO much fun!" Hundreds of costumed people of all ages flock the Lawn to not only fill their bags (or their children's) with unnecessary amounts of sugar but to simply mingle while admiring and adoring all the creative attire. The historic grounds surrounding the famous Rotunda and the atmosphere of the evening really are amazing.

After picking Oia up from school, we headed straight into town to meet Daddy "at work", whose office is a part of the UVa health system and walking distance from the Lawn. Oia dressed as a black cat and Esme would tell you she was a "mernaid", which she demanded to be at least two months ago. Poor Elmo fell off her radar shortly after her birthday party and since then 'mernaids' have swooshed in as this 2 years olds current obsession.

As soon as we arrived to the Lawn, we funneled into line to begin our evening as beggars. We allowed the girls to fill the bottom of their bags before breaking from the line and venturing out into the more open spaces of the Lawn. And as all the years before, Oia just sat down in the cool grass as her heart pleased to absorb the craziness and endulge in some chocolate. Instant gratification. Little sister agreed that was a fine idea.

Oia amazes us. Not an ounce of fear could be seen on her face this year as she scanned over many costumes; some of which would have scared her in the past. This year though, she couldn't get close enough despite size and spook factor. She was on a quest to check out everything. The return of the famous viking crew fascinated her, and everyone else for that matter.

And so did the walking dinosaur skeleton, or whatever that thing is...

But Esme? Not so much. She took refuge in the safety of our arms until the scene was clear of horned men and other mysterious figures. You never know about those walking dinosaur things or what they may do...

The pups in costumes were far more Esme's speed. And I do believe the ratio of costumed animals to costumed people was nearly equal. The littlest Teaster has a deep passion for the four legged friends.

Then of course, you know, you have the random sea creature, banana, gingerbread man, and slice o' pizza. Supreme, of course.

Oia made friends with them all. So neat to see her bust out of her shell and take on the little things that were once her big things. We found ourselves trailing behind her as she bravely left us when a certain costume caught her eye. Rob and I would just look to one another, shrug our shoulders, and laugh in a way that translated to oh well, I guess we're going this way now!

Our family's 5th annual Halloween on the Lawn at UVa was another Halloween night well spent. It's one of our favorite family traditions thus far and I'm willing to bet the girls would agree. Neither of them were happy campers about returning to the car even though this year we stayed long enough to see the place clear out. All good things must come to an end though but Man, that was so much fun!

More on Tackling Kindergarten

This thing called Inclusion Kindergarten is either going to kill me, cause me to drink large quantities of adult beverages on a daily basis, or it may just make me stronger. I'm going to shoot for the latter and hope for the best.

I touched briefly on the issues with school in my previous post (Oia's frustration, my sense of discomfort with the course of the school year thus far, lack of follow through, inside the box thinkers etc.) So, after yet one more note of how inattentive Oia was on a particular day last week, coupled with the feedback that Oia hit out of frustration, I made a prompt decision to yet again observe Oia in class in an attempt to catch these behaviors in action to then in turn target why. I like to fix things. I emailed her teacher stating I would be in the following morning to observe, through the hall window, where I would not be a distraction. In other words, pardon my presence but carry on.

My observation last Friday morning was for a full two hours of classroom activity. I observed, I took notes, observed and took notes. Two full hours. And you know what? Once again, Oia did amazing. She remained on task to the best of her ability and was easily redirected when off-task. She worked hard. She tried hard. She went through the motions just as any of her classmates did. But her team that consists of a teacher, a collaborative SPED teacher, and an aid? They disappointed me in a big way. I'll spare you the details, but trust me, I know a thing or two about teaching and more importantly, I know a lot more about MY CHILD and her needs.

So. The same day of my observation was the very same day I typed up an email requesting a meeting with Oia's principal to discuss the concerns that have been brewing over the last two months of K, and concerns that were the final straw post Friday's observation. And then I stepped far beyond the point of no return. I hit 'send'. My meeting with the principal was scheduled for 8:30 this morning. I was ready.

I was a tad nervous anticipating the meeting this morning but Oia's sleepy and toothless smile as she woke to face another day reminded me for the millionth time why I must step far from my comfort zone and do the things we do. Today, I spoke adamantly. I made very valid points. I provided solid examples noted from my observations of ways that Oia's academic needs are not being fully addressed, due to the lack of follow through from our final preschool IEP meetings and the lack of understanding Oia's conditions. Principal was receptive and never once tried to defend or stand up for the situations or the examples I refered to. It was a great feeling. She heard me and I truly feel as though she understood my perspectives. My concerns/frustrations/disappointments will be delivered immediately to Oia's teachers and hopefully a collaborative plan to address these areas will be implemented ASAP. I trust this will happen, partly because Rob and I will make sure of it. There is a seat under that hall window which opens into the classroom that I will find myself in yet again very soon just to be certain of it. I guess I'll just have to accept being *that* mom. And gladly, I will.

Meeting is over and today I feel good. I feel much less weight now that I've dumped all this away from my shoulders and onto someone who has the power to remedy the situation. I allowed the school year ample time to get underway, work through the back to school transitions that often take place, and now was the absolute right time to speak up. Inclusion is tough but it is so worth the effort. My girl is growing in all areas, at her own beautiful pace. She has friends; typical and non-typical peers. Playdayes are pending. Classmates birthday parties are being added to the family calendar. Our community outside the special needs world is multiplying. And we will prevail at this little but big thing called Kindergarten because Oia already is. And even though this is a subject that shall be continued, I'll still rest my head a little easier tonight because I did what was necessary for Oia. And then I'll sleep like a rock for the first time in months. Good thing because tomorrow I will need all the energy I can get as I brave a field trip with way too many 5 and 6 year olds. Her first K field trip. Oh, the fun never ends with this girl of mine.