happy being trevy

A few days ago I posted this ...written by a friend of mine. She was moved by the response and emailed me her thoughts: To all of Danielle's IS Family, I cant even begin to tell you how overwhelmed I have been this past week with your response to "The 5 things..." that I wrote for Danielle. When I wrote the blog I never thought it would be seen by so many. As each of you know, sometimes thoughts rumble around in your head and you write them a million times up there and then finally you just have to put them on paper. Ever since reconnecting with Danielle through FB, I began to recognize the struggles she was having. They were the same struggles I remember my mom and dad having as they dealt with my sister's death from Juvenile Diabetes. I have so much I wish to say to each of you but I am going to take my own advice and just say, I love each of you even though I dont know you, I pray for you as a Family and for your children individually and I hope that through the co...

A day or so before our trek to Detroit...I found the below email waiting in my inbox. And with premission from the other Trevor's mom...I'm posting it here... ******* Hi, You don't know me..and I don't know you, but stumbled upon your blog tonight and I wanted to let you know that I have a Trevor who had surgery in Detroit over 10 years ago at age 6. A very successful surgery, I might add. It was the most difficult time of our lives, before and after, but in the long run it was the best thing that we were able to do for him. It is a long story, as you know....but please feel free to read a story that was written about him in the Epilepsy USA magazine in 2002. It sums up what we went through. Anyway, 10 years later, our Trevor is a happy, healthy boy. He was seizure free for almost 10 years, and he was able to learn and play sports. He has recently started having some small seizures, but we are working to control them with meds and they have yet to affect his dai...

It's just SO cliche. That we would fly out the day that mad thunderstorms roll through Philly. Precisely where we need to land. So that we can hop our connection to Detroit. It's also cliche that that exact connection to Detroit would be cancelled . Along with two others. Leaving just one remaining evening flight left. On which we were able to scrape three random seats...by the hair of our chinny chin chins! Thank God there was at least one US Air girl with a brain in her melon! And it wasn't the one who met us at the top of the ramp stress-shouting, "WE CAN'T HELP YOU! IF YOU CHOOSE TO NOT RE-BOARD YOUR PLANE TO PHILLY YOU'LL BE SLEEPING ON OUR FLOOR FOR TWO DAYS!" Nope. Wasn't her. And her shouting didn't help our already stressed to the max selves either. We all wanted to be in Philly...not diverted to Norfolk anyway! Thanks to a less stressed and much kinder girl...we held in hand confirmed seats on the last flight to Detroit. And yes...I di...

After my initial FaceBook is creepy phase...I found myself slowly beginning to enjoy it. Reconnecting with old friends. Getting know new ones. It was actually (gasp) kinda fun. And I have to say. I've been surprised at how many college friends have not just reconnected with us. But have taken the time to read through my blog. The back story even! Which I've often thought would bore non-epilepsy peeps to tears! But it didn't. And instead I found old friends (and family) falling in love with Trevy ...and offering prayers. Encouragement. I thought it was a sweet...passing...sentiment. And I was okay with that. Not everyone out there will connect with our story. Most of us live super busy lives. But to my sappy heart's astonishment some of them (hi guys!) continue to follow our journey as I share it here. And continue to offer support...and love...and encouragement via email. Facebook . Or even like the post I'm pasteing below. Written by a college girlfriend...ins...

So I've been hem-hawing about blogging through this next week. And while I'm sure I'll have TONS of guts to spill. I'm just not sure that I really want to. Or will have the energy to. My trusty laptop shutting down several times daily again helped me decide. I'm letting myself off the hook. And going off line. Although I do have one post already scheduled for while we're away. And if you haven't explored the various links to the side of my blog...since your's truly will be on a blogging sabatical now might be a good oportunity! There are some extraordinary families out there! And some wonderful resources. Anyway... Thought I'd nip the worried emails in the bud! ::smile:: Jonathan & I will be clinging to eachother...and Trevy...and Jesus... And probably memorizing the words to this song....since I can't stop humming the tune!

I have been pushing back the thoughts every time they try to invade. On purpose. I don't want to think about it too much. Because if I start dwelling...mulling. Inevitably that will lead to google-ing. And learning. Than I run the risk of stumbling on information better left unknown. Until it's already been Lived through. Because it might destroy the fuzzy romantic picture I hold in my heart. Which always includes a swath of missing beautiful curls. Super heros in white holding swords. Shaped like scalpels. Bright lights. Sterile room. And the monster being skillfully sliced out of his brain. Slayed at last. Freeing the little prince. Which in my fuzzy bubble...concludes with a happy (seizure free) ending. The little inverted mohawk prince wakes at his mommy's kiss. They hug & laugh & live happily ever after... And frankly...I haven't wanted to allow myself to think about it too much. Just in case... In case Dr. Rockstar says "no". In case I've l...

There is a beauty in being busy. And as exhausted as baseball season had us...there was a beauty in it. No couch potato time. No unlimited dwelling on Detroit time. But now that it's just a weekend away...we're getting jittery. Very. J.i.t.t.e.r.y. Anyway... Because I've been asked for a little more specifics. For praying purposes. Here's The Plan. Sunday... Leave RI early afternoon in route to Detroit Check into a very swanky hotel...thanks to Coach B! Monday... Trevor will be admitted & hooked up to the leads around 4pm for a 24 hour VEEG. Jonathan will spend the night with Trevy in the hospital. I can't think without my sleep. And I'll need my wits about me for our consult the following day. I keep telling the EEG techs at Hasbro that Trevy should be the hospital model! That cute face! Tuesday... Late afternoon Trevy will be unhooked. Meet with Dr. Rockstar at 4 pm-ish. We've been told to expect it to be a loooooong consult. Wednesday... Ch...