Skip to main content

and I didn’t even notice

 

 

I never thought that would happen.

 

 

That I’d miss it.

 

 

That it would roll right by without melancholy mommy feelings and tears and the whole tide of emotions that typically washes over me when a day like that passes.

 

 

But here it is.  October 18th.

 

 

And October 9th…the day they took half my child’s brain to rescue him from the Seizure Monster…a day I never thought I’d forget…passed right by and I didn’t even give it a nod.  It slipped right by without me noticing. 

 

 

I probably wouldn’t have at all had Jonathan not mentioned it to me.  And when he did, I was truly astounded.  Then I started to wonder what exactly that means?  Because it feels weird knowing that I forgot.  It feels wrong somehow.  Like I should wear black today instead.  And try to conjure up all those emotions I usually battle through this month.  But maybe it’s a good sign?  Maybe it means my heart is healing up a little bit.  Maybe I’m growing?  Or maybe I’m too busy living in the now to cry about the yesterdays?  The now is pretty busy!  Maybe my emotions took a vay-kay to somewhere sunny and warm this year?  Maybe it’s a fluke?

 

 

Guess I’ll find out next year.

 

 

But today, he’s sick with a tummy bug.  And asking me to cuddle up and watch Disney Jr. with him.  No time for tears today even if I wanted to!

 

 

…danielle

Comments

Anonymous said…
Your emotions went on a sunny vacation without you? How rude! I wonder what all of this means, perhaps that he's done more amazing things with half a brain then you could ever imagine.

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.

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...