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

Wednesday, May 22, 2013

A Bit of May

May is one of my favorite months. Having my birthday and Mother's Day all in the same month makes for a lot to look forward to. Both are now behind me. 36 feels pretty darn good and being a Mommy is my ultimate joy and always will be.

April showers have done a wonderful job of showering into May. Like the rest of the east coast, we have been under raindrops far more often than under the sunshine. This kinda' chilly, wet spring weather has had me on a mission to get my girls into their own pair of rain boots.

And the Laurie Berkner song titled "BOOTS" just happens to land on the Teaster girl's Top 10 which only means these kiddos needed some. I pulled through. And the rain has continued to fall which is making us very happy. Splashing in the rain and mud is good for the soul.

And speaking of good for the soul... There is nothing quite like the very moment of the evening when both girls are in their beds and the final nighty-night is exchanged. Both bathed, sleepy, cuddly, tucked in and especially sweet. Naturally, I always tell Oia I love her at bedtime. She usually returns a sleepy "ok" in reply. She can't independently say "I love you" yet. I settle for whatever reply she can give me because world-class huggers don't need words to confirm their love and because I know that one day she will be able to say "I love you too, Mommy". Esme is the last one I say love you to each evening, as the baby in her needs my shoulder just a little bit longer than her sister does. Just three nights ago, I gently lowered our sleepy Esme down into her crib, told her I'd see her in the morning just as soon as she woke, then turned to walk out of the room while whispering I love you, Esme... and with one more step towards the door I faintly heard "lub you" from inside that tiny, white crib. I froze for a moment to not only internalize the words but more so the feeling they gave. "I love you, too", I whispered one more time. Mommy's need I love you's and my very first one is now filed into memory forever. These tiny and soft-spoken words are just as good for the soul, if not better than, a good pair of rain boots. Oia will tell me she loves me too one day, just as soon as she can. I know she will.

Also this month, we ventured on a weekend away to the Sharpe's in North Carolina. We so enjoy relaxing with these dear friends on their rural slice of Heaven, which offers a nice and much needed break from the tight neighborhood we live. Cows were tagged and fed, Ms. Emily the donkey was loved on, tractors were rode, fish were caught, and we all had our fair share of cow poo under our feet. Pure country bliss. Thank you Jason, Suzanne, and Sawyer for your love and southern hospitality that we can never get enough of.

And to close, next week is the end of another chapter for Oia. Just 4 days of her 3 PK years left. I'm ready for us all to move on to new and fresher things, whether we are ready or not. Currently, her IEP for Kindergarten is still incomplete and under "negotiation". It's a nitpick of wording at this point to ensure that verbal commitments from the school are documented properly and carried through with. I'll save the topic and details for when this loop is finally closed. IEP talk is draining anyways...

Have a blessed Memorial Day weekend, everyone.

Tuesday, May 7, 2013

I'm Calling This a Post

I'm trying. I'm trying to share with you several things but nothing is making sense. I've just sat at this computer for way too long now and deleted each new attempt at making a worthy post. A post about how the adjustment phase post cast is taking a temporary toll on Oia's mobility. Or a post about how Oia's IEP team, including us, can't seem to make it to the same page concerning her Kindergarten placement. After 2 long meetings, we are still "negotiating". I wish this process didn't have to be so heavy or taxing on my heart, but it is. I'll save the details for another day... Tonight, I'd rather just take the easy route and fill all this white space with not words, but with some of my most recent and favorite photos of the very two girls who make my world go 'round...

Watching Esme's mind at work is nothing short of amazing. She's a pretender.

And a snuggler...

And she dresses up for life almost every day.

This beautiful individual continues to grow in many lovely ways...

and those unexpected lessons that she likes to deliver just keep on a'comin'.

She, too, is every bit of amazing.

Sunday, May 5, 2013

Cast is Gone!

The cast is off and has been for 4 days now. But it left its mark. A nasty pressure sore to be exact, which explains why Day 6 and 7 of the two week casting period Oia was reluctant to walk and when she did she limped and often cried out. School even resorted to a wheechair on Day 7. The night time hours were the worst these two days. We followed doctor's orders though... to push on and see if the pain, or whatever the problem was, subsided. Which it did. Oia was walking with ease again by Day 8. The set back was a mystery for the remainder of the two weeks until the moment the back half of her cast was removed. The bloody heel inside the cast revealed a pressure sore on a fairly bright reddish-purple heel. Damn. Poor thing. Note to self for the next time when I won't be following doctor's orders.

The doctor said the tissue began to die at the site of the sore which created a hole in the blister's center. The area was dressed with a medicated bandage for a couple days after and it looks better with each passing day. The good news is that she doesn't seem bothered by it and the two weeks in the cast did what it was intended to do. Doctor said the stretch was more that he expected it would be, which is a pleasant surprise. Her stretched calf allows her to bring her heel closer to the ground (less high on toes) and as you can imagine, walking less high on ones toes has a positive impact on stability. We are hoping this nice stretch lasts for a long while. Oia seems happy about it, or maybe she's just happy the "boot" is off, but I'd like to think this stretch feels better for her. Despite the nasty sore, I'm filing this good stretch under "Success". I'm so thankful for these tiny interventions that keep our girl movin'.