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

Monday, August 29, 2011

Party On

I guess you could say we've strung out the big #4 this year. We celebrated the day before Oia's birthday with some dear friends who were visiting from North Carolina. Of course, we celebrated the day of her birthday, just the 4 of us, and again yesterday with a belated birthday playdate involving some of Oia's best buddies. We spent the low key afternoon playing on Oia's new playset, visiting, and eating cupcakes. We were thankful that these special friends and their parents could celebrate with us.

A highlight for me this year was watching Oia blow out her own birthday candles. The overrated skill of blowing is fairly new to our Miss as last year she couldn't blow them out. Not even close. It's a skill that's easily taken for granted. The inability to close or round lips and force air out of ones mouth falls under the big bad category of speech and language so given the language challenge she experiences, I was never surprised she couldn't do it, just a little sad about it. I secretly wished to myself during last years unsuccessful candle blowing attempt that she'd be able to tackle those darn candles this year. Well, she's a wish-come-true kind of gal ~ between she and her buddy Landon, those candles didn't stand a chance.

Saturday, August 27, 2011

Operation Playset

I know all too well what a sensitive and bittersweet subject playgrounds are for those who live within the walls of the special needs world. Thankfully, as Oia has grown and developed physically, I've been able to rid my heart of most of those playground anxieties and today I'm in a much better place where slides, play structures, and bounding children are concerned. It wasn't even until this summer that Rob or I began contemplating the purchase of our own play structure suitable for Oia, simply because navigating outdoors was still quite a challenge and sometimes a hazard. We shopped around, both locally and online, for the most suitable and sturdy setup we could find.

I had my vision for what I thought Oia would like and found one that was close to perfect. With a few modifications, we made it just right. We requested handrails to be added to both sides of the stairs and ladder. As is, the structure was only provided with a rail on one side. The extra railing is key for safety of course, but it's great for encouraging the use of two hands as well. The ladder needed to have flat, wide steps instead of rungs. Rounded rungs are an accident waiting to happen for a girl who has been known to raise to her toes when walking or stepping. I'm not crazy about the rock wall that the structure came with but I chalk it up to good therapy. One day, she'll be able to conquer it, I'm sure. But overall, this girl deserves a playset. She's worked mighty long and hard to be able to navigate one (although she still requires a spotter when climbing up and down steps).

And so it begins... clearing and preparing the site

Building up the enclosure

Filling the enclosure with a whole lotta' mulch (thank goodness Rob had some extra help)

And the final product

Oia isn't able to safely hold herself and use a sling swing yet (the swing in the middle) but she can sit safely in the basket glider (left) or the toddler swing (right)

Backside of playset; steps, ladder and rock wall

Oia and buddy Sawyer check out the view from the clubhouse

Oh, just imagine the hours of fun that will ensue with Oia's new playset!

Monday, August 22, 2011


Oia, with each passing day, we love you more and more. You ground us. You amaze us. You are everything to us. Thank you for the best four years of our lives. Happy 4th Birthday, Big Girl!

Monday, August 15, 2011

Back to Preschool

Today was an exciting day. For Oia, it was her first day of her second year of preschool. She was so tickled to be going to school this morning and the fact that she could wear her brand new backpack was almost too much excitement for her little soul to handle. For me, today meant the end of one really busy summer therapy schedule that consisted of 4, sometimes 5, therapy sessions per week. Add in the occasional doctor's appointment and we were always coming or going somewhere. Our summer was consumed (by things not always so fun) and oddly, a new school year means a slow down for Oia and I.

She is in the same special ed preschool class this year with the same teacher and assistant. It's a good set-up for her and one that I am pleased with. There are a couple returning students from last year plus a couple new ones. She will be going to school every day, from 8:15 -1:30, except for Tuesdays, which is reserved for our usual private PT and ST. She will also get all therapies while at school, but I'm adjusting her IEP soon to lessen her therapy load. I want this year to be the year for academic focus and Kindergarten preparation so instructional time in the classroom must be the priority. I feel like physically Oia is in a good place and we can back off a bit where therapy is concerned.

I'm anxious to see what progress and gains will come this year of our social and vocal butterfly. I'm most hopefully for more language development and if we're lucky, some gains in the potty training department as well. She has so much potential and determination ~ there is nothing she can't do.

Go get 'em, little girl! Learn away!

Friday, August 12, 2011

What's in a Name?

Many have questioned. Lots have asked. Where did you come up with the name Esme?

Both of our girls were named long before they were conceived. Naming our girls was one of the easiest things we've ever done. I'll start at the beginning...

Rob and I used to live in North Carolina. Oia was newly diagnosed during our last year as residents in Tarheel country. And then just like that, the future of such an innocent baby seemed a mystery. Rob and I were tripping in the dark, trying to find some light, some answers, and the strength to move forward. The lonely and never ending game of wait-and-see had begun. What will our baby with cerebral palsy be able to do? Or not do? Will she be happy? Or accepted? Will she have friends who will love her like we do? There were always way too many questions and never enough answers.

But there was always hope. Some days hope came from a positive therapy session, a sweet note from a co-worker, but mostly it came from a new movement or giggle or simply from a smile from our little Miss. And some days, hope came from the dainty preschooler who lived just 3 doors down. Her hair was dark and curly. Rob and I were quite fond of her. She made us smile. She was well mannered and had a great family. Her visits to play with "baby Oia" were few, but significant to Rob and I. She didn't see Oia has a baby who may have been different. She didn't see the cerebral palsy. In fact, she probably knew nothing of it. I suppose that's the beauty of it all. She just saw our baby as someone to love, to gently play with, to hold. As Rob and I were dealing with the whirlwind of emotions that come with the diagnosis of a child, we were also thankful for the visits from our neighbor girl. They meant a great deal to us. And no one knew but us, but Esme was hope. Perhaps we can say she was Oia's first friend.

That was nearly four years ago. Flash forward to March of this year, my 22w ultrasound, which added another helping of bad news and worse case scenario to our plate. Not one girl with special needs, but now two - this time a baby with congenital heart defects. Rob and I were feeling as though the view from rock bottom was all too familiar and hope seemed to be hiding. We knew we were having another girl and the decision had long been made to name a second daughter Esme. After that ultrasound though, I felt the need to make sense of the situation, to find some peace so to speak. Or at least try to. I sat down at my computer and did a search for the meaning/origin of Esme's name. After a couple searches, I found what I was looking for and it shocked me. The meaning of the name left me frozen and staring at my computer screen.

Esme: "loved", "to love".

In an instant, it all made sense. And suddenly, it was all going to be alright. And just like that, the pregnancy had some perspective. It became very clear to me that our baby was being created and growing just as she was meant to be. Our baby girl, with a unique heart, whose name means "to love", was appropriately named long before she came to be. What else should one do with their heart but to love? Coincidence? I think not. Just another part of the plan. And how lucky are we to be the recipients of this special love?

Tuesday, August 9, 2011

My Sign

Esme' is three weeks old already. Our families who have come to visit and help out after Esme's arrival have all returned home. Rob has returned to work. Oia's weekly therapy regimen has resumed. Now, it's just me and the girls and I've been occupied adjusting to our new life. I'm tired.

But life rolls on.... Oia had speech therapy today. I loaded up into the car what felt like all but the kitchen sink and ventured into town with both kiddos in tow. My first time solo with both. On the way there, Oia and I were "talking" (but really I was thinking about how I just wanted a nap, or at least some caffeine). I typically understand very little of what Oia says and mostly I do a lot of agreeing and head nodding. At one point, there was a lull in our conversation so I said "Oia, I love you". I tell her this expecting no verbal response thanks to the significant language delay that we continually battle with, hence today's therapy session. But a few seconds after I told her that I loved her, I heard her spunky little voice loudly yell from behind, "Moooooooom!" So, doing what all good drivers do, I took my eyes off the road and I turned completely around to see what was so urgent in the back seat. And I'm so glad I did because to my delight, I got to see the words I've been dreaming to one day hear. I saw two skinny little arms crossed tightly over her chest and with the biggest grin you've ever seen, Oia was saying, rather signing, "I love you too."

No picture to prove it. No witness to see it. Just the memory in my mind that I can return to whenever I want, over and over again. For now, that trumps what any word or words can communicate. She told me she loved me and I heard her loud and clear.