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

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.

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.