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

Tuesday, July 22, 2014

On the Day You Turned Three

Dearest Esme,

No one ever told us how steep the learning curve is from age 2 to 3. A little warning would have been nice. Or maybe not. What a beautiful and refreshing surprise to ruin. The ride along this year's learning curve with you was straight up, way up and fast. And it was downright incredible. The two year old in you, Esme, has had me wishing that forever there would be toddler feet pattering the floors of our home and that the sound of your mispronounced words would always come from your nubby little body whose head barely reaches my waist. I loved age two. And I adore you. It's bittersweet this growing up thing you've chosen to do, and a part of my heart was truly sad to see this formative year of your life side right past your Daddy and I.
A typical conversation in the weeks leading up to your third birthday...
How old are you?
"Two", you'd say with two fingers extended.

And how old are you going to be?
"Free", you'd answer with a twinkle in your beautiful brown eyes and three fingers extended.

When is your birthday?
"July twenty", spoken with the sweetest emphasis on the u. "I'm having an Under the Sea party!"
And yes, Esme, that's exactly what we had on the day you turned three. On Joooly twenty. An Under the Sea party for you, our beautiful baby girl who believes in "mernaids". Especially the red-headed ones.
On the day you turned three, I softly sang "Happy Birthday" to you as I entered your room to greet you for the day. You were cozy, and warm, and still covered. You gave me a sleepy smile as you stretched your arms above your head, then asked "Am I three now?"

On the day you turned three, I felt the need to photograph your every detail just as it was, right then and there. Somewhere among you are last remnants of baby and I'm still desperately trying to capture the last of it all before it all fades away. Your silky hair, your eyelashes, your shiny nose and cheeks, your fingers, your little legs and feet. But you denied my camera on the morning of your birthday and played shy. That's ok. I like this side of Esme, too. It's very you.
On the day you turned three, I reflected on the day you were born. Naturally. I did so all day long really, but especially so while alone in the garage as I hung the jellyfish decorations for your party that you, your sister, and I made together. Happy tears flowed the moment I first saw your pink little body fresh from mine, as well as on the day you turned three. I will always cry on the birthday's of you and your sister because reflecting on fond memories and giving way to happy tears are a few of my favorite things to do.
On the day you turned three, we celebrated you with a small but powerful fraction of the dearest people we know and love. And who know and love you. Your NeNe and PaPa were here. And among these dearest of people also includes Suzie, Sawyer and the Butler's, who traveled the morning of your party from North Carolina, then back again on the same day. You are so loved, Esme. And so fortunate.
On the day you turned three, you carelessly and joyfully ran around our yard barefoot with all of your little friends. And you bounced nonstop in the pink bounce house we rented for your big day. It was the same one we had for Oia's birthday party last year. You loved it. We all did. You jumped so long and hard that there was not one strand of dry strawberry blonde hair left on your head. You have always been a little hot box.
You celebrated your birthday with your PaPa, who turned 75 on the very day you turned three. Calling my Dad, your PaPa, from my hospital bed on the day you were born to announce the arrival of you, his second granddaughter AND to wish him a happy birthday in the same phone call was one of the neatest things I have ever done. Celebrating each of your birthdays together since then is nothing short of a blessing.
Oh Esme. A couple of weeks before your birthday you asked me if I would still love you when you turned 3. Such innocence poured from your voice. Realizing in a moment that such a thoughtful question needed reassurance in it's reply, I said I'd love you no matter how old you'd become. And no matter what you'd do. It's unconditional, this love. A Mommy's heart never stops growing and filling up with love for her children. Trust me on that one.
So go ahead and grow, Esme. I want you little forever, it's true. But some big and mighty things are destined for you. I'm certain of it. Grow up, and be kind, be love. Be 3, be 4, be whatever age the good Lord is willing you to be. Your father and I will always, alwaysalwaysalways love you. And so will many others. Especially that pretty cool big Sis of yours. We love you so much, Esme Anne. Even more than you love mernaids. We will never forget the tiny you and everything about you, on the day you turned three.

Monday, July 7, 2014

Home Sweet Home: The Beginning

The idea of building a home of our dreams was at one time just casual dinner conversation between Rob and I, just two young souls who weren't even married yet. Remembering one of these vague and lofty conversations had while on the back deck of our first fixer-up home makes me smile wide and feel silly all at the same time. We had no earthly idea what we wanted or even needed in a "forever" home, but it seemed so adventurous and easy to dream big among ourselves and say aloud, Yup, one day we will build ourselves a house!

Skip ahead about 15 years, a few moves, and two kids later, and our "one day" has come. That little hump in the mountain to the right contains a sliver of land (purchased last Fall) that we have deemed suitable and perfect for spreading our family's roots and for growing two things: dreams and little girls. It seems as if all the world knew this place was for us and our family and has graciously agreed to leave it alone just as it is for all this time, while waiting for us to find it when the time was right. All I can say is that this place was meant to be. It's us. It just feels right.

Our builder broke ground just a little over two weeks ago to begin building the home that we have spent well over a year designing. Seeing the first downed trees and mounds of shuffled dirt, not to mention the cleared path intended to be the lane made for a very surreal and exciting day. Holy cow, this is really happening! Our home is officially underway and expected to be complete this Novemeber. With any luck, Thanksgiving memories will be of the first memories made inside this home. Critters will be added to the family as the girls have their hearts set on a cat or dog or both and Mommy wants chickens. Daddy is a good sport who gives way to our shenanigans and an even better man for providing in great and many ways for his family. It's because of him that our lungs will soon savor the first scents of a crisp and woodsy autumn, our ears will delight in the steady spring-fed stream that runs fast down the mountainside just behind our home, and our minds will stretch wide into the privacy we have been blessed to find.

Home is wherever my family is... and soon, we'll be across the railroad tracks from where the foundation remains of a historic train station are still visible today...
Then, just down the narrow and private gravel road a few yards...
Past one of the most beautiful trees I've ever seen...
And beyond the old barn on your right...
To the left of the "Custom Home" sign...
Down the little curved lane. We'll be right there. Soon.

Currently, the large hole is a teaser of what's yet to come. (I spy Rob and Oia.)

So much to look forward to. So much to be excited and thankful for. So do stay tuned. This is just the very beginning.

Wednesday, May 14, 2014

Buddy Ball

Over the years, we have always been open minded and in search of activities that are appropriate and beneficial for Oia and her present level of needs. All activities we have ever exposed Oia to in the past have required the involvement of an adult to assist, closely monitor, etc. to ensure that Oia is always safe, first and foremost, and to ensure that she is properly engaged in whatever the social setting is. Almost anything is possible in Oia's world when she has a shadow, a second set of eyes/hands, a buddy.
A flyer for Buddy Ball came home in Oia's backpack late this winter and I didn't hesitate to sign her up. Much like learning to ride a bike is a rite of passage into childhood, so is being involved in some sort of extra curricular activity that, for us, is not driven by some therapeutic motive but instead for the sheer fun of it. Think ballet, piano, voice lessons, t-ball. We've chosen the latter for our busy bee, thanks to Coach Wade and his dedication to Buddy Ball.
The concept of Buddy Ball is simple. Any child with challenges, regardless of age, can play on the same T-ball team where the players are assisted by a Buddy. A Buddy is anyone with a warm heart willing to assist, run bases, cheer, and play the game alongside a kid who would otherwise not be able to participate in the game independently due to physical and/or cognitive disadvantages. Our team, the Orioles, consists of about 8 players of various abilities who have been meeting every Saturday morning since the end of April.
Anything goes on this team. We only play each other. None of us even bring a ball glove. The score boards are never on. We don't win and we don't lose. We have no audience other than the families we come with. Not all players are present each Saturday to play but number doesn't stop those who do come from playing. Buddy's are mostly parents and our coach, but sometimes siblings and visiting family members. Your kid only wants to run, but not hit the ball? That's fine. Your kid wants to hit and then run all the bases at once because we all deserve the feeling of what a homer feels like? Go for it. Your kid just wants to skip a turn at the plate to pick flowers or chase balls instead? That's cool, too. Or maybe the first hit off the tee wasn't your kids best hit? That's ok, hit it again. You're among friends. And hey, siblings can play, too.
Our team is safe and understanding. We get each other. Our team offers no pressure because no one is judging. Our kids are playing the game that they can play in the very best way that they can play it. That's all it is and that's all it ever should be. And that's just plain awesome.

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.