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.

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.

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'.

A Carolina Blue Cast

Today was the day Oia got her cast. We strayed from the typical pink this time and chose Carolina Blue instead. She and I are the only Tarheels in the house (my alma mater and Oia's birth place) and since we had sole color-picking rights today, then light blue it was.



I spent a good bit of time preparing Oia for her cast this time around. Back in 2010 for her last casting, an explanation would have more than likely been too much for her to understand. How awful to put her through procedures then with little or no explanation but we did. And she still loves us. But this time, I pulled up pictures of her from those previous casting experiences and I explained as simply as I could what was going to happen today and why. She was curious. She listened and really processed my words. She asked why? and said ok. Trust was written all over her sweet face... Until we got into the casting room. Then she knew that what we discussed was really going to happen. She grew anxious and her face became flush. She started to cry and asked to go home. She begged for Daddy who she misses terribly while he's gone for work this week. Although it makes me sad to see her fears, I was proud of her reaction and her understanding of the appointment because I know she senses this is help. She was brave for the entire process, which of course, is quick and harmless.

Dr. R was able to very easily, he said, get her foot into neutral at 90 degrees and then some, for a little added stretch. This will be good. She walked to the car on her own afterward and once home, we broke out the Sharpies. Both girls were excited about writing on Oia's "boot". Esme made an E, Oia wrote her name and drew a rainbow, and I added a thing or two of my own. We even saved a little space so Rob can add the final touches once he returns home later this week.



I gave the Princess a dose of Tylenol to ease the night-time ache that I remembered from the last time, and she has been sleeping soundly since 7. Day 1 of 14 over. We got this.

Here Comes a Cast. Again.

Well, this beautiful individual is growing up. Literally. Her ortho appointment yesterday revealed Oia is at least 3 inches taller than she was last May. Growth is a wonderful thing for all children but for Oia, it's also an evil. Bones grow, muscles pull tighter, joints become stiffer, range becomes compromised, movements become rigid; all compliments of cerebral palsy. 'Tis part of this life.

Physically, Oia is at a place where intervention to alleviate the tigtness is in order. It has become difficult to stretch her right ankle into neutral (90 degrees) and right knee bends more than desired as a result. It will always be a game of growth-tightness-intervene, and repeat. Always. Thankfully, our interventions are minimal and easy, for now at least. Despite her right sided weakness and increased tightness, our doctor noted how symmetrical Oia's body still is. That's huge.

So. Because our doctor doesn't feel that Botox will deliver any greater relief, or stretch, to Oia's right leg than two weeks in a cast would, we have concluded to scratch the toxin off the list of interventions. I'm cool with that. She didn't get much relief from Botox when we experimented with it over two years ago. Results for her were more drastic with casting. So here's the plan... Return for casting next Tuesday, right foot only, for a hold of hopefully 90 degrees or closest to it. Cast will remain on for an entire two weeks. Once the cast is removed after the duration of two weeks, doctor will assess her range to then determine what needs to be done next. More than likely, it will be a night split (think SMO-style with padding) to maintain the gains received from casting. It sucks but it's just one of those things. What's two weeks? I thank my lucky stars every single day that this is what we deal with. It could always be more. And it could always be worse. But right now, this is okay.

If Only I Had Known...

I wrote the entry below while Oia was still an only child and as best as I can remember, it was even before I was pregnant with Esme. At the time, I wrote this for a different purpose other than for this blog but in honor of D-Day, which I only take a mere second to remember, I'm finally sharing this piece now. Oia's Diagnosis Day was exactly 5 years ago today, on April 2nd, 2008. She was barely 8 months old.



If Only I Had Known…

So much about being set on a path that you never expected to walk is about surrendering to the notion that you are not in control of the big picture. As a child, I never imagined what my life would be like as an adult. Sure, I was determined to graduate college, certain to find love, hopeful to marry and eager to have a family; all when the timing was right. It’s easy to imagine such things, to dream of their perfection, but when I did, I of course never dreamed the life that has become the one I live today.

I did graduate from a top-notch university and I did find the love of my life who I later married. And yes, we began a family. After that, my path took an unexpected turn and the “big picture” suddenly became much bigger than I. The detour made me feel like I’d never find my way back to where I thought I needed to be but once I surrendered and ultimately accepted my fate, I realized that I wasn’t on a detour after all but headed in the best possible direction chosen just for me and my family; one that would lead me to beautiful perspectives and the most touching, unexpected lessons that would shape me into the woman and mother I never dreamed I could be.

The “detour” happened on April 2, 2008 when my 7 ½ month old daughter was diagnosed as a spastic quadriplegic with Cerebral Palsy. The news took my breath away, weakened my spirit, and rendered me speechless. I was a new mother and a naïve one at that, thinking why on earth is this happening to my baby and our family? Life just felt cruel that day.

Some time has passed since then and it delights me to say that I am nowhere close to the person I was then nor do I feel the same way. That day changed me for the better but at the time I was too hurt to understand what was really happening. If only the person I am today could have visited and prepared the person I was on the morning of April 2nd, I could have saved myself from the emotional pain and overload that was about to take place.

If only I had known then that the pain of that day would slowly fade.

If only I had known that my tears of anger and sorrow would eventually dry from my face and be replaced with giant tears of absolute joy.

If only I had known that my child’s determination would provide me with more hope than I’d know what to do with.




If only I had known how parenting a special child would give me the ability to slow down and absorb life’s littlest details that so many others rush by without notice. Life isn’t a race and slow is okay.

If only I had known that this special needs parenting journey doesn’t get easier. It just shifts and changes. Both my child and I become much stronger and tolerant as a result of the experiences we tackle and overcome.

If only I had known that I don’t just have a daughter with a life-long disability but instead I have a daughter who has become the best teacher I’ve ever had.

If only I had known that the special abilities my daughter has far outweigh her special needs.

If only I had known that I would so easily be able to find the silver lining in any situation. There is always a bright spot amid the darkest of moments. Always.

If only I had known the acceptance and patience that I would acquire as a special needs mommy; not only for my child but for the world around me as well.

If only I had known how thankful I would be for such an unfair diagnosis. The greatest of blessings often come in disguise.



If only I had known how content I would become because of this unexpected turn and how absolutely stunning the view is from this portion of my path. This was no detour, just a planned portion of my life’s journey. I could have never dreamed of this life before my daughter entered into it because I never knew what perfection looked like. Perfection is my child who deals with and lives so eloquently with the challenges that are a part of her. Now I know – and knowing these things on Diagnosis Day would have erased the sadness and made me realize how amazingly blessed I really am. My daughter isn’t an angel on earth by chance or circumstance but an angel of God’s will. I was chosen to be her mother and I will spend the rest of my days as her student. I am both humbled and honored to witness life from the wings of this special little girl who I can so proudly call my own.

Uneventful Update

Dare I jinx myself by saying that life has been, what I call, so wonderfully uneventful these days which might explain the lull between this post and my last one? And knowing that I am without my most supportive and eager reader leaves me somewhat unmotivated to put forth the effort and share what would always trigger the sweetest responses. My Grandma is missed, and greatly so, but according to Esme, "GG" might be closer to us than we realize.



Anyways, here I am today with some long overdue updates because life has a way of so sweetly rollin' on. For the sake of documentation, here goes.

Our second trial of giving Oia the anti-seizure med, Trileptal, is still going well. Two doses; one with breakfast and one with dinner. Side effects are none, seizures (knock on wood) have been absent, and overall it's a scenario that we are happy with. If only we could make the milky concoction taste better, but thank goodness for M&M's.



I've heard and read a bit about kiddos in the special needs world who are poor sleepers. For unexplained reasons, these kids do not naturally produce enough Melatonin (but I'm no MD so do not quote me on this). Although Oia is not a poor sleeper, she is, however, a bear to put to sleep; a crying, protesting bear that we have battled every night since almost infancy. Her body/brain just doesn't know how to quit. Her bedtime refusal could easily last 30 minutes, or longer. Easily. It's a horrible way for both parent and child to end the day. Enough was enough. So at last neuro follow-up, we questioned the use of Melatonin, a natural sleep aid, and her doctor wrote us a script for the liquid form. Oia and Esme call it cherry juice; Rob and I call it pure magic. After just 2ml's at bathtime, our girl becomes sleepy and willing to snuggle into her own bed. Finally a peaceful end to the day, and we all deserve at least that.



Our family took a brief escape to a Great Wolf Lodge last month with our dear friends, The Sharpe's. We bowled kiddie style, played some light game that I never got the name for, devoured too much pizza, and had two days to enjoy water play. We enjoyed the break of routine and the time spent with great friends. Weekends like this don't happen often enough but we're thankful when they do.



The Teaster abode is still on the market. It's been four months of trying to maintain this house so it appears as if no one lives here; ready for a showing on a moments notice. I'm in constant cleaning mode. Traffic has been slow but we are hopeful with warming weather we will get this house sold sooner than later. In the meantime, Rob and I have been meeting with our potential builder and tweaking floor plans on a home that will one day meet the needs of everyone who lives in it. It's so very, very exciting but frustrating all at the same time as we have property picked out; land ready to call ours, but no commitment can be made until this house sells. Holding patterns are not for us.



So, see. Overall uneventful. It's a good thing in our world. Just the way it should be to easily live in the moment and savor all the yumminess these two girls of ours have to offer. Up next in the books; appointments with ortho and ophthalmology. Hoping the uneventful remains.