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

Monday, July 22, 2013

Esme with a Dose of Elmo

I could easily tell you she was born yesterday. Because that's exactly how it feels. But somehow, much more time has gone by than just 24 hours. I mean, really. How can one go from the first primal reach and gulp of breath outside the womb to hopping, dancing, problem solving, speaking, and singing complete songs in just 24 hours? Instead, it's been 24 months. But how does all that even happen in just 24 months? I'm mind blown. Our beautful, smart, funny, sparkly-eyed Esme is now two. And holy smokes, is she ever fun!

Our Elmo lover shares her birthday with my father, her PaPa, who was here from Ohio to celebrate with us. Many years seperate the two but their hearts are very close. Esme talks of him often. Their second birthday together was special and my wish for Esme is even the slightest memory of it.
Because every girl must be dressed the part, she wore a handmade Elmo dress that I designed and a friend perfectly made. But the Elmophernalia didn't stop there. I decorated our home to make sure she saw something red and furry at every turn on her big day. Our excitement was fueled by hers. And days like these are just one of the many kind that make me think to myself over and over again I-still-can't-believe-I'm-a-Mom-and-this-is-MY-kid!

Dearest Esme Anne,

I'm trying to think of what to write to you, and for you, but all I can do is shake my head in awe and smile as I recall July 20, 2011 and every day since then. You have been an extension of me from the moment you were delivered and laid upon my round belly. You were born a Momma's girl. And although your infancy days were trying for me because of it, I am so thankful you are.
You are a lover. I do believe my left shoulder draped with your beloved Blankie is your most favorite place in the whole world. You give amazing hugs. And soft kisses. Your lean-in to meet my lips with yours is almost sweeter than the kiss itself.

You have an abstract mind. I was standing in our bathroom recently getting ready to leave the house when you exclaimed something from the floor. I looked down to watched you trace with your finger the grout between each square tile, and then I understood what you were trying to tell me. "Cross, Mommy, Cross!" Indeed Esme, the vertical and horizontal lines between each tile do intersect to form little crosses. Many of them. And today you pointed out that the back and forth lines created in the carpet by the vacuum were actually w's.

I love your love for books and song. Listening to you entertain yourself by singing makes me stop what I am doing every single time. I must listen to savor your sweet toddler voice as it is now and I chuckle to myself as I hear your version of the original. Sometimes Oia joins in with you. I'm amazed at your obsessions and habits too. Elmo goes without saying, milk and GoGo Squeezes you would starve without, and no venture out of the house is possible unless you bring along a stuffed "friend". Thankfully, you do not discriminate and randomly rotate through your plush stash on a regular basis. Except for the 900 that you demand to sleep with.

Flowers make you happy. They do me too. Although tulips, stargazers, and zinnias are at the top of my list, your coined "bubble flowers" (dandelions) reside at the top of yours. I once showed you in early spring that you could blow them like bubbles, or like a candle, and you were hooked. Our yard should be full of them by now.

You have an innocence and understanding for things that I can't describe. For things that are much bigger than us. Shortly after the passing of your GG, you randomly told me on more than one occasion that GG was "up", as in Heaven. I confirmed your statement. You also told me one night before bed that you have five angels. I asked you to name one. That's a heavy and much too large of a topic for a one and a half year old but you told me GG was, and without hesitation. I cried.

Esme, you are just an all-around neat kid. And now you are two! Your spunk and yumminess are irresistible and paired perfectly with your sisters. Oia has had the best two years of her life because of you, and so have we. We adore you and feel such pride to say you belong to us. And we love you so, so much. Happy Birthday, sweet girl. Now carry on... more beautiful things are waiting for your discovery.

Thursday, July 18, 2013

Family Trip to Myrtle Beach

Our family is still smiling from a 7 day stay in Myrtle Beach, made possible by the Hampton family who graciously allowed us to stay in their ocean front condo. Unfortunately though, they could not join us this summer for a shared vacation and we missed them, no doubt. Instead, my parents and sister made the venture with us. The girls were excited.

Our week was peaceful. We stayed on the beach "all day" as Esme would tell you. Our only goals were to soak up every last ray of sunshine that we could possibly stand and collectively find 100 shark teeth by weeks end. We were successful on both accounts. Our tooth search quickly grew into an obsession and now we have 200 shark teeth that we have no idea what to do with. And Esme, that girl, found one of the tiniest teeth of all 200. All by herself. She's amazing.

Oia was one with the ocean the entire week. The wide open space of the beach provided our girl the freedom to run, roam, and do whatever her heart desired along the shore. The beach suits her busy soul well. She was constantly moving, digging, filling/carrying/dumping buckets, stomping and splashing, or making friends. She was in her own world and blissful to be there. Watching her just be, as she pleased to be, was delightful to witness. Many beach-goers, young and old, stopped to play with her and/or comment on how joyful she was to watch. Precious was a word we heard a lot. And because of her, we met a lot of new and friendly faces.

Esme, on the other hand, took to the ocean with a bit more caution. She's not particularly a fan of sand and she was ready to call it a day if she fell victim to an unexpected splash or wave. Each day however, she grew more brave and tolerant and was willing to stay on the beach for longer periods of time. Our beautiful beach baby collected a lot of awwww's herself.

Each day of vacation came with its own highlights - some being when two varieties of starfish washed to shore (one of which I found and returned), hermit crabs that found us before we found them, a tiny shark that was spotted among us, unbroken shells that were plentiful, and the low tide each afternoon that offered up the perfect sand bar.

We also did the touristy thing and visited the local aquarium. I knew Esme would love seeing the aquatic life but from past experiences with Oia, I wasn't so sure how she would do. I believe her poor vision and ADHD combined with the thick, often blurred, glass-walled tanks makes it hard for her to truly see and appreciate the exhibits. To her eye, the lights and reflections within dim spaces like these seem to be more of a distraction and a processing overload than anything else. Beautiful to our eyes, visual clutter to hers. Oia was most engaged (and fearless) when allowed to reach in and touch the sharks and horseshoe crabs from an open tank. She's just a hands-on girl. Can't say I blame her.

And a highlight for Rob and I was an evening out (sans kiddos) to Murrell's Inlet. We dined on sushi and local seafood while sipping adult beverages and conversing little. We act like fish out of water, or at least it feels that way, when the girls aren't with us but the break, if only just for dinner, is nice. We returned to the Inlet later in the week with the rest of the family because a sign this fabulous just couldn't go to waste. There was no leaving SC without a picture of my sister girls under it. Crazy and all, I just love 'em.

And of course, one with my sister too... because she really is the crazy one.

Crazy sister of mine twisted my arm a bit and convinced me to parasail with her. My father joined us. Let's say that it was eventful in all the wrong ways, for me at least. Tiny boats and high swells don't play nice with me. Apparently, I'm a land lover in my old age. I toughed it out and sailed anyways although it wasn't pretty... because what other choice did I have? By the time I reached that god-awful point of seasickness, land was just a speck on the horizon. Lucky me. But consider memories made, seasick and all. I already put a big ol' fat check in the box next to PARASAIL though because I won't ever be doing that again. Nope, no siree.

Overall, our week together was lovely and little girl smiles were priceless. We all got a much needed break from reality and there's no better place to do that than where salt water meets land. Sand and sun are just good for the soul. Family time is an added bonus. And we are thankful for the week that was full of all three.

Friday, July 5, 2013

Summer Camp

It's always important for me to keep Oia involved in purposeful and preferably educational activities while maintaining some sort of a routine during summer break. Her behavior is far better under structure than it is with idle time. She's not the kid that begs to watch TV, or thinks to do much on her own, or even engages in independent play. Oia is less of a leader and more of a follower and a helper. And that's okay... but I'm not going to lie. Filling summer days to keep her mind busy and productive is challenging on so many levels.

Enter summer camp here. An area preschool was recommended to me for possibly being a good fit for Oia. By good fit, I mean one that would welcome Oia and her challenges because they had done so before. The preschool plans themed weeks all summer long where campers have a choice of attending half days, extended days, or full days. I called the preschool to discuss how camp was set up, explained a bit about Oia, and then set up a time to tour the facility before making my decision to send her. My impression of the preschool and staff was a good one. The director was very thorough and asked a lot of questions regarding Oia. We both decided that there was no reason why Oia wouldn't love a week of camp. But, we also both agreed that she couldn't safely attend alone. Swimming, changing clothes, outside play time on very unlevel and root covered ground all requires a great deal of assistance to Oia.

Now, enter a camp shadow, aka Oia's Aunt B. Aunt B was planning a week to visit from Ohio and so we coordinated her visit to be the same week as Oia's camp. Thankfully, the camp director was supportive of the idea to send Oia with her own shadow. And quite frankly, I think she felt a sense of relief as well. My sister is no stranger to shadowing and helping kids with multiple needs so knowing she would be alongside Oia while I was not, was complete peace for my Momma heart.

Aunt B and Oia attended one week of summer camp together from 830a - 1245p. The theme was Rainbows, Volcanos and Bubbles. The week provided several hands-on experiments or demonstrations and according to B, Oia was intrigued by it all. Very attentive. Sat criss cross and listened. Was quiet. Was polite. Was everything I hoped she would be. Only one camper questioned why Oia had braces on her feet and after B briefly explained the need for those braces, the teacher intervened and asked all the kids to gather around Oia while B put them on her (it was after swimming) so in the event that Oia should ever need help with her braces, each camper would be familiar with how to better help. A lovely, teachable moment.

Just one other time did a little girl question why Oia spoke differently than she. B said something along the lines of "That's just how God made her talk" and with that the girl nonchalantly replied, "Yea, God loves everybody". Difference accepted.

And, as Oia often will do, she did take a tumble in the classroom once. Stumbled on her own feet, fell forward, hitting her forehead on a wooden bench. Of course, she screamed. So to not be a disruption to the class, B began to take Oia out into the hall to comfort and calm her down. Once again, teacher intervened. She stated that her class knows how to take care of their friends when one of their own gets hurt. And just as she said that, one fellow camper came running with a cup of water and another with a wet paper towel. All for Oia. And I love that. Another lesson on compassion. Amen.

Oia made friends. Friends chose to sit next to her at lunch, to play with her in the pool, and to play Duck, Duck, Goose during outside play. Oia came home tired but smiling. She had a little spring in her step all week. That translates to all things good. The week was successful and fulfilling and we have Aunt B to thank for that. She is a gem. And she gave up a lot to be here for Oia. Thanks B, we love you. You made Oia an extra happy camper.