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

Thursday, November 13, 2014

Dealing with the Divide

The cute sparkly red shoes that are often worn by Esme these days are a dead give-away of her obsession to the timeless production of The Wizard of Oz. Sister confirms with me each time I help her put on those beloved red shoes that Dorothy Gale wore blue socks, not the white ones that she has. It's as if the white socks are acceptable so long as I recognize the fact that I goofed on a crucial part of the whole Dorothy look-alike thing. The wrong socks, especially bright white ones, are a major fashion faux pas. I know, I get it. But at least I got the Dorothy hair-do down pat.

Luckily for Esme, as part of the Virginia Film Festival last week, a big-screen showing of The Wizard of Oz was playing at UVa's Culbreth Theatre. There was no doubt in my mind that I had to feed her obsession and treat her to the big screen despite the astronomical number of times she's watched the movie here at home. There was no doubt in my mind that she'd love it. And sadly, there was no doubt in my mind that Oia could not go with us. I've tried on multiple occasions to make Oia sit through live performances and movies but it's very stressful for the both of us. For my sweet girl with ADHD, the attempts to make her quietly remain still in a chair for even half of a show and fit the mold of what kids without ADHD can do is just unrealistic and borderline cruel. It's not her thing. Her body rebels it. And although I wish it weren't so, I must respect that.

However, such things are Esme's delight. She's hungry and wide-eyed for the imagination, the dress-up, the plots and story lines, the suspense, and all the characters that intrigue. But for Oia, it's just too much. What stimulates one child of mine does not always stimulate the other. The difference is often a challenge to parent and leaves me feeling torn. And as it often does, the great divide of parenting two very different children came knocking last Saturday and I had to make a decision. And a decision I made, the first ever of it's kind for me. I split myself. I got a babysitter for Oia (Rob was out of town) and I had a special morning out with just Esme. I had to make sure Esme saw her Dorothy on the big screen and I had to make sure she felt important, too. It felt so right yet at the very same time leaving the house with just one of my girls felt so wrong. I've never done it.

I try to parent from inside the divide, meaning I always keep both girls together, yet it is hard and not always the best of options as it spreads me very thin in some situations. The divide forces me to make decisions. The divide forces me to choose a side. Some days the divide is tiny. Like which kid gets my help and attention on the playground? Which kid gets out of the bathtub first when both are begging for a towel? Who gets to help me crack the only egg when both want to help me bake? And some days the divide is gaping. Like last Saturday. Could I take both of my girls to watch the 75th anniversary of The Wizard of Oz on the big screen? The answer was I wish.

I prefer the divide didn't exist, however it's something I have little control over. Sometimes it's there and sometimes it isn't. The good Lord thought it necessary for my girls to be just as uniquely different as they are and so I'm thankful. I'm thankful I get to take the divide and use it as a tool to teach my kids that life is a give-n-take scenario. I choose to view the divide as a natural place from where I can show my kids that differences do exist and that's okay and that being patient with what or who is different than ourselves is a must. I can teach them that the only place to go from a divide is towards the middle, and closer to each other, as we learn from one another while respecting and accepting the differences. And probably most importantly, I want my girls to seek joy in the happiness that comes from one another while experiencing life from opposite sides of the divide but remembering that the middle is where we will always meet back up. And share. And love. And be together again.

The good news is that these divides are only momentarily. Saturday's divide was only as long as The Wizard of Oz, or the yellow brick road. But the happiness on Esme's face as she gazed upward onto the bright big screen and sang Over the Rainbow along with Dorothy was no greater the happiness that poured from Oia's body as she simply raced to the front door to welcome Gena, the babysitter, who she happily had all to herself. I had two girls divided by differences that day but both with the same abundance of happiness brought on by two very different experiences. They indeed were happy. Therefore I was happy too. And I was content with the differences in my girls that day mostly because they were. And to me, I suppose that's all that really matters.

Friday, October 31, 2014

Halloween at UVa

Halloween is an anniversary of sorts. This crazy holiday never rolls around without my thoughts drifting back to the age and time that Oia became an independent (albeit very unsteady) toddling walker. She was just over 2 years old. In retrospect, I think how absolutely amazing it was that she conquered her own palsied body so soon and took her first steps long before I predicted she ever would. But, living within that intense two years of rigorous therapy with a toddler who was *so close* to walking felt like time stood still and laughed at us and those days of mobility felt so far out of reach. It's all about perspective and it was the first test of our budding patience.

Oia was upright as she held our hand for stability for her first Halloween on the Lawn at UVa. I'll never forget it. She was 26 months old. I remember thinking, more like screaming from the inside "Look everyone! She's walking! She's doing it!" for she had worked so hard to do so but few would understand, so we just smiled a lot and said Trick-or-Treat for her instead. So every Halloween that has followed, I celebrate my child's mobility as we dress up, meet up with Rob at work, gather and fill our candy buckets, and literally chase our run-away 7 year old. She has never stopped moving since her first Halloween on the Lawn, 6 years ago. My favorite family tradition.

This year we were accompanied by a tiny Dorothy and by the swiftest runner around. The runner was not a fan of her race bib so she set her own trend and wore it on her back. That's fine. It's the side of her we see the most. The kid is perpetual motion and is almost always running somewhere despite being told to walk, or slow down. Exhausting, but awesome.

Our Dorothy was not alone as we stumbled into other look-alikes but I'll go out on a limb and declare that ours was the cutest. Ever. Her friends were there too. And even a real Toto, much to her awe and delight.

Although Dorothy is Esme's current obsession, Alice comes in for a close second. We ran into her, too.

Little Red Riding Hood is a cool chic, also.

And a potted baby almost gives me the fever to change this party from 4 to 5. But relax. I said almost.

Always a good night on the Lawn at UVa. Our family's 6th one is now in the books. So thankful to be a part of this University and this community. So thankful for two able children, one of whom learned to walk long before I thought she would and thankful for girls who can run away from me. Even when I don't want them to.

Happy Halloween! Until next year.

Friday, September 19, 2014


September? I think I'm still hanging out in August, or maybe back in July somewhere. I don't know. Maybe it's our girls' current obsession with The Wizard of Oz that currently makes me feel like Dorothy when she realizes she's not in Kansas anymore. We certainly aren't where we used to be either, which was in that gray house at the top of the little hill with far too many steps. And it was summer. Now it's September? But admittedly, as ready as we were to move out of that house, moving out feels a little bittersweet. It's a house that has served us well for 6 years and it's a house that begged us to move out and find better for our girls. We've listened. And thankfully, it's a house that is now under contract.
In mid-July, we offered this house to market. Just 3 weeks after that, we packed up only the essentials (which proved to be way more than we thought) and moved into a temporary townhouse rental that is located within the district limits of Oia's school once our new home is complete. It was imperative that we reside in our new county by the start of the new school year (despite the projected November completion date of our new home) to avoid transitioning schools mid-year. Although we have only relocated one county west, about 40 minutes away, the area and community here feels like a different, much brighter world. The change is nice but exempt from that is the townhouse life, which to be blunt, sucks big time. I'll spare you the details of why because the hateful neighbors below aren't worth a drop of my time but I repeat this is temporary, this is temporary, this is only temporary even in my sleep.

The positive of this transitional living is that Oia loves her new school. She loves her new teachers. The kid comes home happy. I get running hugs each day after school with the squealiest "MOMMYYYYYY" you've ever heard that results in arms around my neck and legs wrapped around my waist for a tight hug that lasts a minimum of 5 Mississippi's. That reason alone justifies why we needed to move here. Such a change from last years school experiences. No more pit in my stomach this year after drop-off each morning because Oia's assistant is my answered prayer. I want to hug that lady after school the very same way Oia hugs me. Oia is in such attentive hands now and I finally feel like a part of the team, not the opponent. This special girl is getting the special education that she needs and deserves and more importantly, one that she enjoys.
And since the move, Esme has become a Preschooler, at least for 2 mornings each week. She told me she was "a little bit bigger now" just after I happily announced that she was officially enrolled for school. Although she claimed she'd miss me and it took some convincing that preschool was a good idea, she never looked back or shed a tear on that first day and felt confident enough to hold just *one* of my fingers as she entered her classroom for the very first time. I love her onward personality and wise soul. And she loves her newly made friend named Kate. From preschool, of course.
Somewhere in the midst of all of our summer happenings and just prior to our move, Oia had been complaining of her teeth hurting. We knew it had to be from crowns that had come loose but treating Oia's oral issues can only be done under general anesthesia as she is less than cooperative while in the dental chair. ("Less than cooperative" translates to a screaming mess.) We had hoped for the replacement of both crowns but once into the procedure, the doctors felt it was best to remove the molars entirely as the adult molars were already migrating up and into place which would again cause shifting and problematic crowns. Turns out a third baby molar had to be removed as it's position was jeopardizing the proper growth of another emerging adult molar. So when it was all said and done, our girl woke with three less teeth and a ton of pain. Thank God only baby teeth were removed. And thank God our girl has a history of growing teeth early. The adult molars have already begun filling in the gaps. No matter what though, her smile can't be ruined.
Overall, the girls are well and have transitioned seamlessly. Rob and I? We are far more grumpy and stressed than we ever have been. Selling a home, building a home, and currently living in a place that will never be home makes us feel disconnected and scattered. It's temporary, it's temporary, it's only temporary... and it's all for the better. Even if it does feel like we are in Oz right now.

Wednesday, September 3, 2014

Seven Years

I could tell you my internet has been wonky. I could tell you that the move into temporary housing until our dream home is complete has completely rocked my boat. I could also share the secret that every time I try to gather my thoughts to write about Oia I get lost in a puddle of tears and give up. Every damn time. Times are beautiful right now, but quite hard too in the land of motherhood. All of this is true but still, my girl deserves a birthday post. Even if it means the whole coffee shop sees me crying behind this laptop. I'll carry on through tears, because Oia does... So, here's to you, my first daughter.

Dearest Oia Lee,

It's hard not to reminisce and relive the details, play by play, of the day you were born. Seven years have gone by since I stepped into motherhood and I can still tell you every detail of the beautiful day you were born. Starting at 4am that morning. The contractions that woke me. The emotions that filled me. The phone call to my midwife that calmed me. The details of August 22, 2007 will never fade. Ever. They are as strong and as vivid as the little girl they belong to. That's you, my dear.

For seven years now, I have been reliving your birth day. At your birth, I was blindsided by your power to simultaneously change my name while dividing my life into before and after. It all happened at first sight of you, which was more like a reunion than an introduction. I hardly remember my previous life or to describe it more accurately, I'm not the same person I was when living the previous life. Not even close. I'm better now. You get (and deserve) the stronger, the more complete, me. Since your birth day, you have been working hard to shape my world and stretch my perspectives beyond any point I knew possible. You have tried me and tired me. You have loved me and trusted me. And you have forgiven me when I have failed plenty. You have taken away every ounce of my patience while teaching me how to find more of it. No individual thus far has ever taught me or reached me the way you have. Just how do you do it? And mark my words Oia, no one ever will. I'm seven years stronger. You, too, are seven years stronger. And as I often say, you are seven years of a beautiful handful... seven years of unconditional love... and seven years of rainbow, because we certainly have had our fair share of rain but thank God the sun continues to shine. And it does so every day, beginning with your smile.

Oia, thank you for waking each day with a smile on your face, even when I don't. Thank you for erasing the previous day and allowing me to start all over with each sunrise. Thank you for delivering meaning to this life and thank you for graciously showing me what life really is meant to be. Thank you for breaking down the barriers between complete strangers with your always welcoming personality. I know your across-the-room shout-outs and hello's in public places have set free their recipient from a bad day. Your magic flips a frown upside down and warms the coldest of hearts. A stranger once told me you are an angel with a ponytail. It's true. And the best part of all of this is that you don't even know how magical you are. Selfless and loving is you, coated with an unbreakable innocence. Thank you for allowing us the front row to witness you power through this crazy and hard life. You do it well. And should you ever encounter doubt about how well you're doing, just know that your best is enough for your Daddy and I. We promise. Carry on at your own pace but don't forget to look behind you when you need us, because we will be right there. The view from over your shoulder is our spot and we wouldn't trade it for anything or anyone else in the whole world. My favorite of loves is the love I have for you, little big one. Here's to a blessed seven years and to a blessed every day thereafter. I love you. So, so much.

Sunday, August 24, 2014

Home Sweet Home: Basement, Walls, and Roof

Nine weeks ago, our new home build officially began. Trees removed, dirt shuffled, rocks and boulders piled up, driveway created, and holes dug. Little by little, the space where we will soon live was opened up and brighten up and it already felt like a breath of fresh air. The hole quickly began to line with concrete and a basement took shape. It's become the biggest basement I have ever seen and one of the most intriguing places our girls have ever puddle jumped. The hollow space got a 10 for echo quality which created for squealier little girls. And by the way, squealier is a word in our house. So, puddle jumping in the basement. Write that down as the first memory made on Orchard Ridge.

And from the basement, one can only go up. Seeing the first stacks of lumber on site just a couple weeks into the project was real and exciting. Funny the things that make for a gratifying life as we grow, age, and mature. Stacked lumber of all things, and the smell of it, too. Ah yes, that's exciting stuff.

But even better, in a fairly quick manner, those stacks of lumber have become wall after wall after wall that have eventually come to resemble one big ol' giant-sized game of Pick-up Sticks. Home sweet home is taking shape nicely.

It's kind of exhilerating to be able to twist our way through the giant game, carefully weaving our steps under, over and through the hollow walls and spaces that will become our completed home. Pointing out future bedrooms, and windows, doorways, and closets, feels very much like the fortunate opportunity that it truly is. I can't help but think of all of the ways our family will grow over the years while housed inside these walls as we navigate and experience the bare bones of this place for the very first time. I pray often that the stake we have claimed will serve us well. And furthermore, serve well all of those who are near and dear that come to visit.

Progress is jogging along at a surprising pace. We are trying to be understanding of the fact that the heart and guts of the house will slow the process some but we are grateful for the progress thus far. We have witnessed crews working through the rain, in the evenings, and even on Sunday. As of this weekend, windows are in and the front door and the door between the garage and mudroom are in. Both front and back porches are taking shape and the upstairs guest room will be the last room to frame in, likely in the upcoming week. Tar paper lines the roof.

Come on, November. We are ready to have our space. Ready to feel settled. Ready to make some awesome memories. But who says you have to live in a home to make memories there? Not us. Teeter tottering in the garage, searching for the perfect walking sticks, and climbing the "rock palace". Yeah, we're gonna love it out here.

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.