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

Thursday, April 24, 2014

Still Figuring Her Out

Lately, thoughts bounce inside my head from one day to the next. Thinking, sorting, pondering. The emotions tug. I'm not clear on many things and though that's all I am clear about. I'm talking motherhood. Raising our firstborn gives me absolute meaning in this world but our parenting highs walks alongside great challenge, frustration, heartache, change, wonder, and all the things in between. I'm almost 7 years into motherhood now, which seems like I should have an idea of what I'm doing. Truth is, I'm kind of clueless. Raising an angel with such complexities makes every day so very different than the previous one. Many days are hard. Few are easy. None are a breeze. The easy days are when Oia's best behaviors shine through and I think to myself, yeah, I got this. why am I so stressed? But then it never fails. A new day brings an all new experience and I'm tossed back into reality and proven wrong real quick. A fierce love for the child(ren) my body was once swollen with is my only constant.
Here's what I'm getting at. Earlier this month, we took Oia to a routine developmental pediatric appointment. Two days prior we had just met with a local autism institute (per the advice of Oia's neurologist) to discuss resources and options that might be available to help us better understand and in turn handle many of Oia's behavioral issues. Her behavorial issues have developed into what can feel like the weight of the world at times and have even begun to hinder the way our family functions. That's a little hard for me to say. Think man-to-man as opposed to zone. Think take-out instead of dining in. Perhaps you get the idea. Oia lives life in bold, and she is so full of life but only capable of managing one emotion or feeling at a time. Rob and I questioned Oia's neurologist and developmental pediatrician about the possibility of Oia having autism, however they conclude it is unlikely. She does seem to dance along the spectrum with some of her peculiar and quirky behaviors but an excerpt from her developmental peds report suggests a diagnosis of a slightly different kind...

That excerpt reads:
Oia is a 6 year old girl with CP, seizure disorder, and ADHD. She continues to struggle with behavioral problems including hyperactivity, impulsivity, and inattention. She also demomstrates some features of obsessive compulsive disorder including anxiety, inflexibility, and facial tics...

OCD. It makes sense. But damn. The schizencephaly. The cerebral palsy. The seizure disorder. The ADHD. The apraxia. The blah blah blah. And now the OCD. It's enough. It's so hard to look at my baby's beautiful face - with the perfectly round, sunkissed nose and silky skin whose neck I can still nestle my face perfectly into - and believe that this black and white print belongs to her. But on those hard days when her impulsivity and bursts of anger break through, I'm reminded that these words do indeed describe portions of her. How do I navigate the black and white? Somewhere in the middle of "fixing" her and accepting her just as she is is where I believe lives the greatest balancing act of all. Allowing her to just be means that all her issues surface in a multitude of hard-to-handle behaviors that are not our daughter. It's tough. Challenges and behaviors still remain, even with interventions (therapies, medications, etc), as only the degree or severity of them changes.

From the same report per her last developmental pediatric appointment states:
"Would consider referral to behavorial psychologist. Also consider respite services to alleviate family stress." Yeah.

Somedays I think our family is thick as thieves and bound by the toughest of loves. Rob and I have to be to manage and manage we do. We deal. We put out tiny behavioral fires as they occur and do our best to avoid situations that may create them. We do our best to love one another and be patient even after we've tapped into all our reserves before the day is over. We often feel strained. Weekends are especially hard with a kiddo who doesn't know how to deal with idle time well. We often like to slow the pace on the weekends and not feel as though something must be planned but it's not applicable. Oia must be busy, and must be entertained. Oia is full throttle all the time. She has always had an incessant need. It seems now that is in part of OCD (maybe?) and of course, ADHD. Meltdowns happen. Sometimes they are without explaination. Oia's tricky behaviors are not new to us but as Oia has grown these challenges we face as her parents feel heavier, and more prominent. It's completely appropriate to pick up an infant or toddler when ones behavior is less than desirable but it's not as appropriate to always scoop up your almost 7 year old when behaviors plummet and become unacceptable or somewhat disruptive in a social setting, ie. a restaurant. Oia is tall and although skinny, still heavy to carry and so we have outgrown (literally) that option. Conversing and reasoning with a 7 year old about expectations and behaviors is age-appropriate but when cognitive delays and other issues effect the capacity to reason then the door is pushed wide open into a situation that feels much larger than the parents themselves. Our goal is to see less of these behaviors and situations and more of Oia. We are working towards that path but currently it feels as though we are just grabbing at straws while still doing the very best we can. We do have some things in the works.


The black and white is complex. Oia, however, and the amazing soul she is, is so simple. Still. And that's the real tug on my heart. She's a damn good kid whose challenging days try to overshadow her good. But I will not let them. She's selfless and sweet and funny. Helpfulness is her happiness. Sisterhood is her joy. Family is her heart. And ask anyone who knows her best - her smile is as wide as her face. I never would have guessed that being a Mom was going to be this hard. I can only imagine that being Oia isn't exactly easy either. I must always see it through her eyes.

I do believe in phases of parenthood. I also believe this to be one of those phases, however long it may be. We'll get through it, or get a better grip on it. We will find ways to better help her, to better channel her positives. Either way, we'll still count our blessings one by one and be grateful our girl has grit. Because boy does she ever. Here lately, I often recall my grandma saying, "God love her little heart". And I do. We all do. More than Oia will ever know. That's why my heart aches some days.

Your thoughts, suggestions, good vibes, and prayers are always appreciated.

Monday, April 7, 2014

Brief Update and Early Spring Favorites

This side of the world is finally waking and boy, are we ever glad. Budding orchards, greening grass and big fat robins are a welcomed sight after such a dreadfully long winter filled with way too much of that white stuff. Spring is beautiful no matter how you slice it, but Spring in these mountainous parts is simply spectacular.

Spring, although beautiful, is fickle too. She took her sweet time getting here and the temperatures have been all over the thermometer but we are believing in only warmer days from here on out. We have our light jackets, rainboots, and "bented" umbrella waiting at the door should she decide to be stingy with her sunshine and offer rain instead which, today she is. And lest we forget we have one really cool bike and an even cooler bike rider that willingly rides through the puddles or the sunshine. Bike rides don't discrminate over the weather. Besides, her little sister rates sloshy mud and puddles just below her #1 spot of popsicles so rain or shine, it's all good.


As a follow-up to the previous post, our bike rider is back on the mend and currently coasting on the downhill. For now at least. Her recent bout with seizures was the first encounter of it's kind for us and it had us all (school and home) on high alert. It was likely the common case of an outgrown dosage of seizure medicine that she began over a year and a half ago. About 7 monsters visited in roughly a 3 week window before the mutiple attempts at adjusted dosages of Trileptal took effect. Oia's recent blood work reveals that there is still room to increase her new dose per day should anything return. So that's the good news. Only time will tell. Unfortunately though, I believe these bouts will occur so long as our girl continues to grow.

Once we finally got a good hold on the seizure bit, the sweet child ended up with a powerful virus and croup. Sounds like a lovely way to spend an entire week of spring break, doesn't it? Fever, fatigue, cough, trip to the doctor... bleh. Silver lining though is that the illness occured during spring break or otherwise Oia would have likely missed a week's worth of school. Thankfully, I wheeled through the car cirle this morning with a back-to-normal, happy, and healthy Oia who was eager to be back in action. Her spring break is over and so is her crud. Now it's Esme's turn.

And because I'm feeling like I have better photographs than words today, I'll leave you with some recent favorite photos containing some, but not all of, the reasons my cup is runneth over. I'll be back soon to share about Buddy Ball, updates on our land and build project, and anything else that's remotely note-worthy between now and then. Happy Spring, ya'll! Be well.









Tuesday, March 18, 2014

Unwelcomed Visits

Seizures are a bitch. It's just that simple. These ugly and unwelcomed monsters come and go as they please and startle all who witness the vulgar visitor. And when these monsters decide to leave, only hateful remnants remain, like a badly bitten tongue and lost voices but in some cases, even worse. And of course, the fear... Fear for the next one that will inevitably come sooner or later, despite having no invitation to return. Seizures are only under control until the next time.

I wish these monsters would just choose to wrestle me instead of my sweet Oia. I guess emotionally, they kind of do. So admittedly, I've been a bit on edge in recent days but when the average record shifts from 2 seizures a year to 2 in 10 days, many emotions settle into a parent's heart. Worry and concern reside at the top.

Just ten days ago, Oia had her first daytime seizure. (All seizures prior have been nighttime seizures.) Had that particular day not been a canceled day of school due to inclement weather, Oia would have been in her classroom. Away from home. Away from me. That makes me uneasy. The second seizure in the 10 day period occured once she was asleep for the night. Both seizures were brief in duration, lasting up to a minute and a half, and both left her unable to speak for a short time afterwards. She tried but words wouldn't flow and lips didn't move.

The consensus is that this little spurt of activity is attributed to Oia's growth. We have followed orders and up'ed her Trilepal dose twice within the last two weeks and now it's a wait-and-see. Naturally, we hope this is the correct dose for now. We'll soon find out. In the meantime, I'm still watching her like a hawk, questioning her every move, analyzing her every look, kissing her sweet cheeks far too many times a day while asking Are you ok? and I'm still resting my hand on her chest every time I check on her throughout the night because yes, I did that long before any seizure monster came along... I think Momma's just do that regardless. But Oia will be alright. And things could always be much worse.

Saturday, March 1, 2014

Apples on Display

In early January, a note was sent home from the art department of Oia's school via her communication folder. A portion of it states:

This is to inform you that we have selected a work of art by Oia to be displayed at the State Capitol. It will appear in the General Assembly Building in Richmond, Virginia. We have put this show together and are sending it to Richmond at the request of Mr. Rob Bell, Delegate, 58th District, from the House of Delegates.

I had no idea what art of Oia's was chosen and frankly, I didn't care if it was absolutely created by her. It's likely the project was a joint effort between she and her assistant but that doesn't matter. What does matter, however, is that someone thought to include Oia, chose her art, and that in somewhere kind of important hangs a piece of work with her touch, and her name. There was no way we were going to miss its display.
So, our party of four said no to work and school one day last week and made our way to the state capital. We really talked up the venture with Oia making sure she felt special about the idea. Once we entered the General Assembly Building we were instantly enveloped by a sea of dark suited, hurried Delegates darting here, there and everywhere. Such a busy building with busy people but even men with places to go and people to see slow down, step aside and smile for little girls in pink coats wandering aimlessly in such grand hallways. We stuck out like sore thumbs that day.

Once we wove around in an attempt to not be in the way, we finally made it to the 8th floor and found Oia's apples hanging high. We ooh'ed and aah'ed made a big deal over her masterpiece. She wasn't all that into it though as the copier across the hall was far more intriguing. I mean, all those buttons.
Del. Rob Bell's assistant texted him to inform him that we were there and asked that we waited around a few minutes as he was heading in our direction to meet Oia and pose for a picture with her. Oia's anxiety kicked in during the short wait but with Rob holding her, she was tolerant for a quick picture.

I think these apples will find their way onto a wall in our new home one day soon. They'll be one of many "masterpieces" yet to come, I'm sure. So proud of our Kindergarten artist.

Wednesday, February 26, 2014

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.

Monday, February 3, 2014

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.

Thursday, January 9, 2014

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.