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

Thursday, April 2, 2015

7 Years Later

April 2nd, 2008

A day that never gets written on the calendar yet somehow is always remembered. It's vivid memory a scar on my mind. It's the very day our parenthood switched from normal and fairly easy to anything but and hard as hell. It's the day we heard developmental delays, mental retardation, cerebral palsy and your daughter all in the same sentence. A few sentences after that; epilepsy and then therapy. The day of April 2nd, 2008 turned into the night of April 2nd strongly remembered as the night that a new Mom and new Dad cried themselves to sleep while their beloved world all wrapped inside a baby blanket slept between them. Their beloved world to which all those bad names now belong to was just a mere 7 months old. Their lives forever changed.

April 2nd, 2015

Seven years later. Today. A damn good day. Our beloved world, now also with ADHD, OCD, and Apraxia, who was once that little baby asleep between two heartbroken parents participated in her first Special Olympic event with hundreds of other differently abled children. Today she moved her body and mind and did all the things her worried parents wondered if she'd ever grow up to do while fighting all those tears instead of sleep 7 years ago. Today she ran, hopped, threw, and rolled. She participated. She laughed, smiled, high-fived and hugged. She ran away from us. Nothing about this we take for granted. Not a single thing.

The gap between today and diagnosis day 7 years ago seems far and wide. Because it is. Much of what has shaped and molded this life and the people we are today resides inside the gap of 7 years. It's a gap filled with hours upon hours upon hours of various therapies, surgeries, tears of frustration, heartache, pride, doubt, hope, fear, joy, worry, and the fiercest of loves that the human heart can possibly endure. Our girl is 7 years stronger and she's yet to be told she has cerebral palsy. Or anything else, for that matter. She does know, however, that she has a little sister, a Mom and a Dad, and a village full of only the very best support around. She knows the moon is in the sky because her Daddy put it there and that Mommy will die trying reaching for it if she'd ever ask to see it. She is unconditional love and challenges us to be the very same. She knows she is ours and God, do I ever hope that somewhere in that little head of hers that she understands how much we absolutely love her. And need her. And are thankful for her.

Diagnosis Day, 7 years later. Always worth a glance back and a reflection upon by my book. Yes, we were lives forever changed that day. But, we had no idea amid the pain that our lives would be changed for the better. Perspectives stretched, mindsets shifted, outlooks wider, eyes more open, hearts more full.

Yes, better. I swear.

Thursday, March 5, 2015

Winter's Snow

Somehow living in a mountainous area and being surrounded by nothing but woods and blue sky, I have found myself content with winter's snow that I have never before cared for. There is a peace here at this new home of ours, inside and out. Snow covered trees that encompass our view is one of the most beautiful things I can imagine. Being snowed in creates a carefree mindset that separates us from all else, including the chaos of the real world that only a thick blanket of snow can suppress. The blanket of snow is heavy and powerful enough to slow us all down to a pace that life was intended to be lived. I've come to enjoy and appreciate winter's offering a bit more now than I ever have before. I do not love the snow but I'm learning to embrace the respite it provides and I do love the beauty of this place in the wintertime. And furthermore, I sure do as heck love these kids; all warm, plump, bundled and happy to just be.

New winter, new home, new feelings, and an immense appreciation for all of it. Life is and shall be good.

Tuesday, February 3, 2015

Home Sweet Home: We're In

We have welcomed ourselves home. We're finally in!

The Teaster's are no longer living in a temporary townhouse and parallel parking along curbs. We are no longer taking our weekly drive down the twisty orchard road to check in on the new house progress. We are no longer waiting. We are now living. We are living inside a home that still feels like a tiny retreat. Something that maybe we have come to to escape the neighborhood life for a day, something we used to do often. It feels like a place where we've come to for just an afternoon to roam in muddy boots to explore, breathe and debrief, except we've come here to stay for good. Can you believe we live here? is a question that Rob and I continually bounce back and forth between one anther. We haven't come to fully comprehend that we are in fact home... that this place is ours... and that we have always meant to be right here since the beginning of us.

Christmas '14 will always be remembered as "our first Christmas here". Our immediate families have made their first visits already and we have had our first evening of dinner guests. Little feet other than our own children's have already run across these floors and I can't think of a better way to break this place in than that. Our first weekend with overnight friends whom we love as family is in store soon. It's real, this place. Feels amazing to share it with the souls we love most.

Our home is situated on the highest part of our humble 2.3 acres. Our 2.3 acres is a sliver sectioned off of a larger 300 acre portion of protected mountain land laced with gravel roads and dirt pathways that lead to many overlooks. We are one of 3 families who live on the 300 acres, which we have permission to explore anytime we please by foot or by ATV. In other words, we got 300 acres for the price of 2. So much history of orchard life, wartime and the fabrication and first usage of early railways that stretches across the Blue Ridge Mountains belongs to this rural community. The views are stunning. We got lucky. I'm still thanking Rob for finding this place for our little family and I will do so until the day I die.

From the front porch...
Slowly but surely, beloved items that I have gathered and tucked away over the years are making their way onto our walls and shelves around this house. I'll save this for the house we'll build one day, I'd say. This is the fun part; taking inventory of forgotten treasures. Treasures from grands and great-grands are being dispersed into plain sight which fills my heart with joy each and every time I look at them. A quilt from my late grandmother now covers my Oia at night while she sleeps. A purple floral kerchief that was also once my grandmothers now resides under Esme's lamp atop her dresser. A few sets of salt and pepper shakers that I always eyed as a small child that were a proud part of another grandmother's collection are tucked safely on shelves around our dining room. Now a part of my kitchen are vintage and antique dishes from my grandmothers that make my heart swoon while longing to hear what wonderful stories they could share if only they could talk. The handmade wooden tool tote that Rob's great grandfather used to carry makes the perfect wine caddy. The wooden figures that my grandfather carved stand quietly throughout but I still hear his voice when I look up at them. The canning jars from my grandmothers cellar no longer hold her vegetables but filter the sunshine from my kitchen windows instead. These are only a few of the tangibles that will accent all the memories yet to be made here that will ultimately help shape this house into a home. We really do feel surrounded by love.

Oia's room... she wanted red. It's her.

Little sister sleeps here. She asked for purple.

We were adamant this house have a playroom. Best idea ever.

The heart of a home. And my favorite window in the house.

Consider us happy. Our parenthood is a day to day challenge but our home and children are blessings that nothing can beat. So home sweet home we will be... right here and living, not ever to be confused with existing.

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.