Skip to main content

fate of the curls



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...
Labels:

Comments

Mama Skates said…
thinking of u & praying 4 u 2day

xoxoxox,
sharon
August 17, 2009 at 7:52 AM
Liz said…
Hoping that call comes earlier than you think....and that you are ready for whatever the answer is. I love the curls, but they'll grow back. Removal of the seizure monster within would certainly be worth it!
August 17, 2009 at 8:18 AM
Holli said…
I will be checking in like a mad woman today!! As anxious as I am to hear the news, I also understand that either way, you will probably need some personal time to soak it all in. But...still checking anyway!!

By the way, so glad to see the Detroit photo is the new star of the blog!! It's such a gorgeous shot of Trevy!

Praying for good news from Detroit...

Holli
August 17, 2009 at 9:52 AM
MJStump said…
Praying for you guys as I read this post. Hoping that the call comes sooner than expected and you can start breathing again...til then look at the curls and those beautiful eyes.

Hugs and peace,
Jody
August 17, 2009 at 11:28 AM
blogzilly said…
On pins and needles....waiting as well. Wish I had more fingers to cross.
August 17, 2009 at 11:31 AM
Monica~ James~ Connor said…
I've got fingers, toes, legs, arms & i tried eyes(until i was afraid they might stick that way like my mama told me) crossed today for you guys. I'm with Liz, I'd hate to see the curls go but I'm all for getting rid of the seizure monster!!! I'm sure all of our guts are in knots for you. It's almost like we are the mothers to all of the IS kids. {{{hugs}} to you, monica
August 17, 2009 at 11:44 AM
Carolyn said…
Waiting is always the hardest thing to do. HUGS.
August 17, 2009 at 1:01 PM
Mrs. M said…
My stomach is all in knots waiting....and it's not even my child!!:)
Snugle your boy today. Mess & stroke those curls.
Thinking of you heaps & heaps,
Many hugs,
Margo
August 17, 2009 at 2:56 PM
Colby said…
Unbelievable...Just gorgeous!!!
August 17, 2009 at 7:43 PM
Post a Comment

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more

I sure hope...

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...
27 comments
Read more