happy being trevy

So I heard a little tid bit of interesting the other day. Did you know that the angriest community in the world are mothers of young children? Me either! I wasn't sure if I should laugh in liberated delight. That I am not alone ! Or cry that I am she? The proof is in the pissy. And I have been pissy. Indeed . So shoot me. Maybe it's the just passed holiday blues...looming birthday row...all this transition jazz...or PT (my child had 1/2 of his brain removed) SD finally catching up to me? I used to be Miss. Optimism Joy. Once upon a time. I actually won the best smile award once. Had gloomy people tell me how they hated my perpetual happy. I've changed so much...in so many ways. As my skinny pics like to taunt me! I hardly recognize myself anymore. In the mirror. Or the heart. And sometimes it makes me sad. Sometimes I'm not so sure that I'm really being Shaped. Or that I was ever cut out for this mess. Sometimes I wonder if I'd be happier had things w...

I've been in a sucky mood the last few days. Just so much junk swirling through my heart. My head. Feeling heavy. Sad. Scary. Shared that with a handful of friends. One of whom sent me this beautiful link. About a sweet little IS boy...and his family. I needed a Hope pick me up today. And thought maybe you did too?

To complain? Or is it taboo? Because Trevy leans towards the miracle side of IS things. Cause seriously. He's been testing the two-year old waters this week. And when I say testing...I really mean biting. Almost breaking skin biting. And yanking. Hair. Ours and the puppy's. He's particularly fond of sneaking up while she's sleeping and grabbing a fistfull of snout fur. He thinks it's hysterical when she howls and nips at his hands. Oh and he's into pulling. Every single thing he possibly can. Off of every single shelf he can possibly reach. And throwing. The heavier the better. He's just so... so... so... TWO. Terrible. Adorable. Did I mention terrible? One might even say... Acting his age-able! Which reminded me of this very very sweet post from the past. ::sigh:: The adventures of Trevy the Real (Two Year Old) . That'll print.

A little mommy tidbit... It's awfully hard to keep a straight face when chastening your first born son should he... pause... sailor salute... and reply "affirmative"! ********* How big would you smile if you discovered Trevy discovering the earbuds? And (white boy funky) dancing to the PlayHouseDisney tunes he was hearing in them?! ********** Bristel frantically irrational to Jonathan immediately after waking... Daddy...I just don't know who I'm going to marry! I just don't know! ********** Toby was snuggling a very sleepy puppy. I plopped down on the couch next to them. We sat there for a moment. Just enjoying each others company. When Toby finally broke the silence... Hey Mom... I know what Callie wants to be when she grows up. I raised an eyebrow. A mommy! Sigh. Here we go again. With the but how do you know for sure convo. Which always follows the I want another baby brother convo. ********** Dr. Pedi to Bristel during a recent well-visit... Does any...

So remember the other day ? When I waxed all nostalgic about the great answer hunt in the crazy land of Infantile Spams. And things of that nature? So... Yeah... ...ummmmmm ...about that. Seems I misunderstood Dr. Neuro's email. I shoulda waited for the phone convo before writing lengthy posts. Lengthy misguided posts. My bad. ::smile:: And I probably shouldn't be laughing right now either. But it is...really...kinda funny. And SO very me! The thing is...I'm not WAY off base. And to be fair. Her email was misleading! I emailed asking if it was Cortical Dysplasia. She emailed back "it is a migration disorder". Well...so is CD! So they're in the same family. Both falling under the Malformations of Cortical Development (MCD) category. The same. But different. Ooops. And without making this post overly long and boring. I'll try to relay what I learned. Cortical Dysplasia (which is not the findings in Trevy's pathology) is a migration disor...

Trevy had a well visit last Friday. Evidently so did a whole buncha other families. Cause the waiting room was packed to capacity! It just felt so surreal. For me. Actually, I'm not sure if I'll ever get used to knowing. What he's battled. And survive- ing . But sitting there especially. Our first time back to the doctors. Since . Last time we sat in that room it was saturated with the seizures of (one of ) the most courageous little boy I know. But not this time. This time it was saturated with all those rugrats running around. Trevy...all smiling eyes and crooked grin...right in the middle of the chaos. Soaking in everything. While I soaked him in. My heart so very full. Pondering. Overflowing. Spreading upwards. Causing my eyes to shine so deeply I could feel the emotion ready to spill. What a little miracle he is! Always has been! His curls (that's right...we have CURLS!) have grown in enough that his scar is camoflauged. Mostly. Altho...

A common theme I've felt... and heard from others... since our entrance into the crazy world that is Infantile Spasms... is why? Not necessarily why me? Why my family? But why...or maybe more accurately what ? What is causing this insanity? What is it exactly that's broken inside my beautiful...innocent...pure-hearted...son? Put a face to the Monster. It dawned on me rather quickly into his diagnosis (with the help of this post) that the seizures were not the cause. The seizures are the symptom of a cause . A cause. A...as in one of many many many...possible causes. Ever since that sunk in...I have been on a quest to know why. Or what. I suppose I could make it sound all important and selfless by saying that knowing what helps with knowing how - to treat. And I do believe that. But my unquenchable thirst for knowing what is being driven by something deeper. Maybe it's a mommy thing. Wanting to deeply understand and know each of my children. I don't re...

Okay... So before I dive into the chaos that is my life. I just feel the need to emphasize that I am not whining! Or hinting. Though I'll never turn down a yummy meal! I love my children. I love pouring my life into being their mommy. I love the funny little things they do and say. And all the crazy that comes with it. But seriously...I was looking over my schedule (cause loopy me wants to jam a Gymboree session in) and it was there. In black and white. My life (much like every other seizure mommy out there) is absolutely nuts! Before surgery...Trevy was napping twice a day. Juggling was so much easier when he was napping! I even had the time to squeeze in a work out if I wanted. The only squeezing I'm doing these days is into my very tight jeans! And there is no time for make up. So if any locals run into me at Walmart...I apologize in advance. For the muffin top and the au natural face! A Week in the Life of Me Monday... Used to be my free day... now my Gymbo...

I was parked at the computer. Nose to nose with the screen. Catching up on my friends lives. And emails. Ignoring yet another VERY hefty doctor's bill. Placed on the desk for dealing with purposes. But I was not really in the mood to deal. Our computer is nestled right smack in the middle of our living room. Which is essentially the whole of the first floor. A gate blocks the kitchen. Because Jonathan still has not mounted all the safety latches. (hint hint, hon) Another gate blocks the stairs leading up to the bedrooms. Because...well...you'd really have to just see Trev on the stairs to fully appreciate the why of it. ::smile:: Anyway... I was parked at the computer, like I said. The kids on the couch behind me. PBS keeping them entertained. Blogger friends keeping me. When I felt a tugging on my hand. Thinking back on it now...I have myself convinced that I clearly remember a tingle running from my fingertips...right up my arm...all the way to my heart. M...

I've been asking advice from friends I've made along this crazy journey. Friends whom I've grown to trust over time. I found an email this morning from one such friend . Her words (I'll be pasting and italicizing along the way) hit me upside the head. Which...ironically...happens to be the best way for truths to sink in. For me. ::smile:: I had emailed her asking for advice. And venting a bit. That it feels like the heaviest decision is my own. The neurologists (even those I adore) commit to nothing. There is no guidance on placement from them. Integrated vs. Inclusive. They will not say. When asked what Trevy's future will be. They squirm and sidestep with finesse. After your most uncommon surgical journey (one reason the surgeons won’t predict much) you are now on a very common and well-beaten path of EI to special education. Many will try to hold your hand – as I have. You will decide who you trust, instinctively or with the careful thought process you used for...

A seizure mommy friend (whom I consider kindred. And extraordinarily funny!) is also heading down Transition Lane. For some comic relief (is my stress-ness that obvious?) she forwarded me her (witty-licious) responses to the questionnaire she was given to help guide her daughter's placement. Any/all names have been changed (if you don't like them...blame Bristel!). ********* Ask her to point to nose, ears, hair, feet"... Does she point correctly to at least seven parts? NO Does your child make sentences that are three or four words long? NO When you ask "what is your name" does your child say both first and last name? NO Does your child kick a ball by swinging his leg forward? NO SHE IS TOO BUSY TRYING TO EAT IT Does your child jump with both feet leaving the floor? NO Does your child stand on one foot for a second without holding on to anything? NO SHE STANDS ON MY FOOT FOR A SECOND WHILE DECIDING WHAT TO BITE Draw a line from top to bottom. Ask your chi...

I thought it went okay. Then again I woke WAY to early. And couldn't toss n' turn back to sleep. Because all this mess was preventing me. So maybe I'm wrong? I was asked if I'm ready for this? Trevy going off to school. I was getting there. Until full days were mentioned. Seems the kids with more intensive therapy needs get the full-day treatment plan. I am not ready for full days. Aside from all the other reasons...my home-school mommy guilt would eat me alive. I've wrestled that one now for months. How can I home educate the big kids. And not the baby. The reality is...I enjoy the priveledge of homeschooling Toby and Bristel because I can. I have the ability. And energy. And in a way...it helps me deal with the guilt associated with how much I have to invest in Trevy's care. I suppose in a way I hope it fills that hole in their little hearts. And that someday. When they're all grown up. With munchkins of their own (because it's n...

It's so wild. To wake up on the right side of the bed! For a change. I'm talking Toby. Silly! I've been in a funk so long now I think it's here for the winter. But Toby...he slept in late. Which seems to agree with him. As he's been quite charming and eager to help so far today. It's also wild how warm freezing can feel. After a week of ungodly below zero degrees! And snow. Way too much snow. Callie obediently pooped in the white. Again. That makes at least 4 since yesterday! Although sadly...it would seem we're now trading poos outside for pees in. But I'm still claiming victory. And as I stood outside. Coat unzipped. Cause frostbite is now hours away rather than minutes. Squinting in the sunny snow glare. Cheering wildly on the inside as the puppy squatted. Listening to the birdies (who have yet to find our Christmas bird feeder! Which makes sense. The smart ones already migrated to Disney, right?) chirping like Spring is in the a...

Oh yes you will!!!! I just won this round of oh yes you will poop in the snow, puppy! That makes it... me - 1 puppy - I stopped counting

Monday. It begins. The preparation for Trevy to transition. It's our first official meet n' greet. The time has come to move on. Get the boot. Out of Early Intervention. Into the school system. Because...it would seem...three years have whizzed by. And on April 3rd...my baby boy will no longer be classified (officially. Unofficially, he's my last. Thus making it a very real possibility that he'll always be my baby!) as a toddler. He'll be a pre-schooler. Yikes. And for whatever reason...it's all very stressful for me. Although... (shared in a hushed furtive tone) ...a piece of me is looking forward to moving past this crazy therapy juggling chaos...into what I hope to be a more manageable routine. Which includes a couple hours daily of "me time"! Maybe I'll finally lose this baby weight?! Cause seriously. Finding all those old skinny pics of me in the basement (why...oh why...did I choose to fight my cabin fever by sifting the junk ...