happy being trevy

Okay...so I know I was going to be all mum n' stuff. And I might yet. But I got wonderful news this morning...freeing my fingers. Let me back pedal a bit first though. See...I know exactly when this pissy depressed black cloud sank around my heart and filled me up with reclusive sadness. It was during a phone call with Dr. Rockstar's nurse a week or so ago. That very conversation filled my heart with dread so heavy that I sank to the couch breathlessly. Suddenly breathing was not as easy. See...I discovered during that phone call that Medicaid can be brutal to work with at times. And she wanted to prepare me that 20% of the time things do not move in the right direction. I know 20% should seem insignificant . But the day Trevor was diagnosed with a rare & catastrophic epilepsy gave me a new perspective on smaller odds scenarios . Although some of my worry-wart comes honest. And so that 20% has been hovering relentlessly over me for the past two weeks. Steal...

I tend to be a live out loud kinda girl. But sometimes... well...sometimes life is just so heavy. So intense. So overwhemling. That it brings out the recluse in me. Like lately. The thing is...I know it'll pass. It always does. And I'll learn something. Grow. Hopefully. Survive. Certainly. Because I have to. It's just right now. In this particular heavy moment. I would much rather run away to some tropical paradise and sip martinis until Jonathan calls to tell me Trevy's back at home. Happy. And seizure free. With a new head of curls covering the scar and bouncing around the house. I am a coward after all. I've never denied that. And I really don't want to live through this next month. Which is probably why my posts will be random. At best.

It's crazy how connected one can become with people they have never met. In person. I have felt a deep connection with little Bennett...in large part to his dad. Who has the courage to share their story outloud. This morning Bennett's mommy & daddy kissed him goodbye...and handed him over the the heros in white coats. To begin the first phase of freeing their beautiful son from this vicious seizure monster. For the first step of this nightmare miracle. I am a mess. For them. For me. For Trevy. Please take a moment to pray beside them today. For courage. And peace. And strength. For more information on Bennett...and continued updates...click here .

Ever wonder what a hole to China looks like? Felt like forever...but we finally have our yard back! Almost ...they still need to come n' grade & seed. And then we can finally start pricing keep-the-Seizure-Boy-in-fences ! **************** So even though we have our yard back...half (literally) of it is a sandbox! I've warned the kids they are not allowed to play in the dirt. But I come around the corner yesterday and find Toby licking ...yes you read that right... licking his feet frantically. His flithy face blushes when he notices me noticing him. I've gotten good at giving the hairy eye-ball over the years...which meant I needed no words to elicit this... I might as well confess it now... he muttered while slowly lowering his foot I was licking off the evidence. **************** Bristel: Mommy can you carry me to bed Me: How about I give you a piggy back? Bristel: Okay... she paused and gave me her serious face but just don't drop me like Grams did! **********...

I'm not new to the mommy thing, you know. I've been around the plugged in parenting block. Read a book or two. Thousand. Attended a seminar here and there. I buy into the Dr. Sears wear-your-baby-til-you-break-your-back-attachment parenting style. Minus the family bed. Cause I like room to move. I study my kids. And try to discover their love lingos. And try to build on their natural gifted-ness. I know that Toby never turns down a competition. If I want him to help me clean...I break out the shot clock. If I want him to read a book. I tell him so-n-so read TWO. If I think he should ride the pony even though he's desperately afraid...I bargain him McDonald's chicken nuggets AND a double cheeseburger if he will! Which he took me up on btw... After MUCH thinking and coaxing and near chickening out. I know that bathroom humor makes Bristel laugh til' she snorts. Seriously. If I want her to laugh hysterically...all I have to do is say... poooooop And she's a gon...

Where are the parents? They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy. Where are the parents? They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks. Where are the parents? They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as ...

Who's there? October. Okay...I'll play...October who? October...as in just this morning Dr. Rockstar's nurse called with dates. Written not in pencil...but pen ! I know that was lame. But you're reading aren't you?! And besides...I'm allowed a little creative slump latitude. My son is having BRAIN SURGERY after all! And now I know WHEN! Sunday October 4 th ...MRI Monday October 5 th ...PET scan Tuesday October 6 th ...grid placement See...this is a two phase surgery. The first phase... being the grid placement ...where they shave his curls. Open his skull. And place electrodes directly onto his brain. Close him back up...with the wires protruding. Because they must be connected to the equipment. And wait in the PICU for the seizures to provide the necessary data before going in for the real deal. Apologies for being graphic. But then again maybe not. After all we live in the real world. This is what will be happening. To our son . This is...

Does anybody (other than stalk-y me) read the comments? IDK ? Makes me feel all young & hip speaking text! Anyway...instead of wasting my Carpal Tunnel on the chance it may not be noticed. I decided to respond to the comments from below's post here. In the spotlight. Although truth be told...I was tempted. For a moment. To respond to each of you. One by one. And totally boost my comment ratings! ::smile:: But who's counting really? ::wink:: ******* To all my seizure family friends... You seriously made me cry! Okay...okay...so I was already on the emotional hurricane cliff. But you totally pushed me over the edge! Some of us have been friends for a long time now. And our friendship is deep. Like...girlfriend weekend deep. Or lets all meet at Disney deep. Someday ...right? Some of you I'm just getting to ( cyber ) know... But I'm Italian. We're clingy. And being a part of this crazy journey automatically puts you in the heart-connect zone....

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...

Of course my heart is full. Swirling with so many thoughts. And I was going to spill it. Here. But everything was coming out wrong. And I thought maybe that's because I just need to be silent today. It feels like one of those moments when the hush should be deafening. So I'll let it. Be. Until I take that call tonight. And hear word of the fate of the curls...

The Invisible Mother by Nicole Johnson it's totally worth 6 minutes of your time...specially if you're a mom of several. Thanks Sharon for posting this...it's like it was meant just for me! And, like, the gazillion n' one other mommies feeling depleted today!

Sometimes the strength runs dry. Ya know. A bit of a courage draught happening here. I've been feeling pretty cowardly lately. Every time I think in either direction about Monday. D (as in decision) Day. I get weak in the knees. A little naseous. And crazy thoughts swirl. So I've been putting a lot of effort into NOT dwelling. And filling up with happy...positive...input. Like this fabulously inspirational post I drew strength from yesterday! I think EVERY parent navigating through crazy challenging complicated medical issues...should hop over to TherExtras and get a courage shot too! Lots of great info to sift through besides... ******* And on a side note. Barbara of TheExtras and I had a dinner date planned once. It was to be at Cracker Barrel...one a my faves. It's been a very long time since I've stood anyone up. But our girl's night happened to be the caboose to a very bad (yester) day . I didn't want to miss our meet. And got dressed. ...

2009 Expressions of Courage® Art Contest for People with Epilepsy Now Accepting Entries Expressions of Courage ® is a national art contest for people with epilepsy. The contest showcases the talent and inspiration of people across the country living with the condition. Ortho-McNeil Neurologics®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc, in partnership with the Epilepsy Foundation, invites people diagnosed with epilepsy of all ages to share their artwork in this year’s contest. The contest will be open for entries from May 11, 2009 through August 28, 2009 . A panel of epilepsy advocates, art industry representatives and healthcare experts will serve as contest judges and will announce the winning artwork in November. Entries are judged based on creativity and the ability to bring to life the experiences of living with epilepsy. Artwork may be created in ink, pencil, crayon, paint or a combination of these materials and must be on paper or board no larger than 8 ½ by 11 inch...

I've never been very good with The Waiting. Yep...I was the kid at Christmas would could sniff out those hidden presents. Under the bed? Back of the closet? Attic? Hiding places were no match for snoopy me! Although one year mom & dad tricked their snoopster by wrapping our gifts up in opposite! It was a teary Christmas as my brother and I opened gifts meant for the other! The lesson learned faded after a while... So it should be no surprise that this waiting is driving me mad! Allstar games...hunting down remaining tests...and therapies...have helped to keep my brain otherwise occupied. But then there was down time. Yesterday. And I couldn't help myself. I emailed Dr. Fellow. And was like, " I'm not trying to make you uncomfortable...buuuuut... What are we looking at? Candidate odds wise? 50/50? 80/20?" I mean surely he'll understand that I've got Spaghetti Dinners to plan! And crazy hearts to prepare... ******* And yet I proceeded to wait ALL day ...

Okay so EEG Lynn assured me that the left-sided EEG disc is ready. She made sure she could open the file on her system. And she even went the extra mile...and printed out samples! I thought that was super sweet. But honestly...she owes me. She's said some bonehead things in the past that need making up for. I figure this covers one! Although not the one when she told me to let the white coats with degrees interpret the spiking lines I was studying. That would be when Trevor's IS relapsed...and tears were streaming as I watched his sleep cycle on the glowing face. And knew...because sometimes mommies don't need white coats or MDs. ::sigh:: The PET scan has been the hassle though. Called Friday. Spoke with Nurse Sue. Who said she'd call me as soon as she heard it was done. Of course...she weekend-ed without calling me. Hope yours was relaxing! Grrrrrrrrrrrrrrrrr So first thing Monday morning I'm ringing the hospital like a mad woman. Only to learn...

Okay...so just keepin' you on your toes this lazy Monday morning... And posting this picture marathon in reverse order! Okay...okay...so it wasn't really to stimulate your brain. It was mostly cause Blogger is a pain the boot. And I've gone n' caught some sort of summer cold and feel like crap-ola. Which means no patience for rearrainging the pics! How sweet are Toby & Bri?! They created "welcome home" parades with their toys! An uber tired Trevy during our homeward bound Philly layover. Are you thinkin' what I'm thinkin'? That is just HAS to be a good sign? That the O's would "just happen" to be playing in Detroit! Right during our "just happening" to be there appointment? It was Orioles bliss for Jonathan! Trevy was SO ready to blow that joint! This was actually the least messy post-EEG head ever! Don't let the red markings alarm you...it was actually just the grease pen marks the technician used to guide e...