happy being trevy

It's gloomy outside today. Doesn't it just make it feel like the walls are closing in!? Ugh... I totally prefer sunny days. There has been SO much swirling around in my heart. It's been difficult to find the right words. Let's see... We officially resigned this month. I've been so consumed with rescuing Trevor...that I wasn't prepared for how much it would hurt. Wow, it does though. My heart feels raw. Sad. Scared. But secure that we're doing the right thing. It's just that for the past eight years we've been pouring our hearts into building our lives in Africa. Every dream I had of our future always included Tanzania. It's hard to wrap my heart around. I told Jonathan...I just wish we had known. I would have hugged my Tanzanian friends longer. I would have lingered on the beach longer...wiggling my toes in the Indian waves. I would have worked harder at etching the memories deeper, ya know. Jonathan's started putting out resumes. We've ...

I first heard this song last fall. I was on my way to a women's conference in Portland, ME. I guess I was having a cute day...cause the guy at the rental shop let me have my choice of the lot. How could I not pick the convertible?! I think it would truly have been a sin! *grin* And it was on that wind-blow, harvest splashed ride North-ward that this song captured my heart. I loved it from the first note. Of course, at that time I had no idea what lay around the bend in our lives. Nor that it would become HT's theme song. But I can't help believing that the lyrics to this song were whispered especially for us....for Trev...

We must be doing a good job reinforcing the whole Stranger Safety theme in our home. I am kinda a freak about all things safety related. Choking. Swimming. Strangers. Thus the other day... Bristel - outside playing Grams - comes outside to join Bristel Grams - Hi Bristel Bristel - Sorry Grams, I'm not allowed to talk to strangers anymore!

I know because I've tried to come up with them. It has felt impossible to give verbiage to the emotions that ambushed us and sucker-punched the wind from our bodies. But after reading a recent article I feel that I must attempt to share our ACTH journey... One minute we were holding our beautiful, perfect son. The next our whole world was falling to pieces. Our life took a turn that even in our wildest imaginations we couldn't have conjured. At an innocent 7 1/2 months old, Trevor, was diagnosed with a rare and catastrophic seizure disorder. Infantile Spasms . All three neurologists we consulted told us the same thing. If we didn't get his seizures ( and their symptoms ) under control Trevor's developing brain would be irreparably damaged. The only thing between him and a shot at a normal life was ACTH . Jonathan, my husband & best friend, has always been my rock. My Gibraltar . He has been the stabilizing force to my Italian passion. But in the few days be...

Grams has been a huge support since Trevor's diagnosis. She's picked up Toby's schooling ( in preparation of re-adjusting to Tanzania we'd chosen to go the home-school route through the transition ). But after Trevor's dx...everything just fell to pieces. And I needed time to digest & regroup. Mom stepped up! She's been available to keep the big kids whenever Trev has appointments...which are many and always in Providence! It's specialist or bust when you have an IS kid. ( btw Mom...I hope I tell you enough how much your support has meant to me...to all of us! There are SO many things that only hind-sight will help us make sense of. The timing in how everything worked out & being here with you & dad is not one of those things !) Grams also keeps the kids so Jonathan & I have a chance to go out alone once in awhile! Re-connection. Romance! The trouble is...we've been SO stressed out that many times we end up fighting before the engine...

Now enhancing your fave photos is a Picnik ! ------ I'm thinking photo contest?

It's funny but somehow I don't remember when Toby or Bristel clapped their hands for the first time. I wasn't a milestone watcher really. But then, they were always developmentally on par. But with Trevor...it's different, ya know. And it's bothered me for a long time. His not clapping. He'll clap my hands. Or your hands. He'll even bang two toys together. But for some reason he just can't seem to clap his own hands. And I've seen him try. But it's like he just can't get it together. And of course...I'm thinking it's because somethings wrong. It has to be because somethings wrong. On the way home from the beach (after the big picture fiasco) I turned around and caught him red-handed! I present you with... Trevor's Gimme a Hand

Take One -------------- the first attempt Take Two ------------- getting the wiggles out Take Three ------------- maybe a different angle will help Take Four -------- Props! Gimme the props! Hmmmmm...perhaps I shouldn't waste my money on a digital photography class after all!

It had been a really long day. Hospital days always are. And by the time we were buckling up & heading home...I was seriously in no mood. Trev'd had a catheter test. We'd met with various specialists including a Geneticist ( which some of you know is emotionally & mentally taxing ). Spoken with several nasty * tuded * receptionists & nurses . And killed a couple hours touring Providence in between appointments. By the end of the day it was all we could do to stumble to the car. Tired. Weary. Cranky. So when the parking garage attendant told us we had to pay the $4.00 fee because didn't have the blue form - I was fuming . Even after Jonathan was able to wriggle & writhe Trev's hospital band ( because something with the date was imperative, she said ) off his little ankle...she still refused to let us pass. Figuratively or literally. Between the two of us, Jonathan is MUCH less likely to pick a fight. But even he'd had it. And so we sat there. Yelli...

the zoo & the no balloons allowed policy the sister & the bear the fishies & the one year old the daddy & the lunch with the elephants the pose & the pig the birthday boy the swings & the smiles the birthday boy & the balloons cause we're at home the cake & the whatm' I supposed to do now the *hmmmmmmm* & the *yuuuuuuuuum* the birthday boy & the presents The End Until the mom posts the vids...

Okay...so first off this post may fall into the TTMI (totally too much info) category. Secondly...no parent should EVER have to go through that. You can't even imagine how horrific it is. Holding your little-naked-not-even-one-yet baby on a sterilized pad while a teach*ee* ( the down side of teach*ing* hospitals ) inserts a catheter . There's screaming. And tears. And those awful betrayed looks - because you're holding his arms so he can still see you. Trust me. No parent should ever have to go through this. It's very emotionally exhausting. That was our day. Yesterday. For the 3rd time actually...and that's just with Trevor. VUR is hereditary and Bristel had the same procedure because she has the same condition. Her experience was way too horrible to even blog. BUT back to Trev... The awful test yielded good news. A much needed upswing in our news getting. The surgery worked! Dr. Urologist successfully re-attached Trevy's little pee-pee pipes! So...

" Awwww . He's SO cute. And only a little dysmorphic !" ...says our genetic counselor noting his cute but misshapen ears during her exam of Trevor...