Skip to main content

on friendship

Without a doubt...much of my sanity since Trevor's diagnosis is founded in the friendships forged from togetherness in this sometimes tragic & scary & even miraculous & happy IS walk.


This...is one of those friends!


She has supported me (virtually...we've never actually met...although I was drawn to her immediately after reading her IS journey & feeling her passion for advocating for these beautiful babies) through many interesting twists & turns that have come along these past few months. If I'm ever published...she very well may be my chief editor!


I've appreciated every bit...but especially the support I found on her blog today...


Take a minute to support me...by supporting her.


And then...perhaps even writing a letter of your own! After all it's that get involved in politics time of year...


::smile::

Comments

Anonymous said…
Good luck tomorrow! We'll be cheering you on from the cyber world:-) Hope you have recovered from your train ordeal.

Erin
Danielle said…
We're good...tired but good. I hope we can make up with early to bed tonight!

Thanks..

...danielle
JSmith5780 said…
You stink... you made me cry! And I have had a really yucky day (thats for another day)!

I am so excited (and nervous) for you tomorrow! Can't wait to hear from you!!
On Monday, I went on the website that Mike had sent out on the IS Yahoo group and saw your name listed. Very official. I immediately sent an e-mail to my senator requesting her to attend with a brief bio of Sophie. I am really proud of you and Jen for pouring so much of your heart and time into this. You both represent us all very well. It inspires me to do more. Good luck tomorrow. I will be thinking about you.
Shanna Grimes said…
Good luck tomorrow (today where you are). You're in my prayers! I read the article about you on Jen's blog to my mom. It was neat to see your name and Trevy's name. You are famous! You go girl!! Hope you and J have a productive trip. Sending you virtual love and support XOXO.
Danielle said…
((((hugs to all of you)))))

...danielle
Anonymous said…
((( Trevor's mom and family )))) I know you will do a great job in DC and you are in my prayers. I will be in touch again soon.

Much love from the Dawg :@}

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...

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...

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...