Skip to main content

she titled it pointless - I call it powerful

 

I hate to use the word lucky.  But fortunate seems just wrong too. And since evidently I’ve not downed enough of my morning mo-jo (Dunkin’ Dark Roast…thank you) I can’t think of anything better than saying…

 

I have the honor of living just a hop, skip and bridge away from another IS family.  I love them.  Even if we don’t get to see each other as often as I’d like.  We’ll have to try over the summer! 

 

Jacob is my other little boyfriend.  So cute.  So beautiful. 

 

I love Jacob’s mommy too.  (Hi, B!)  Especially the way she shares her thoughts.  Her heart. 

 

And a recent post was SO powerful.  To me.  That I had no choice but to share it with you…

 

“ If 4.5 million children were born in a year, maybe 1,500 of these children would develop Infantile Spasms (IS) in their first year of life. And maybe 1,200 of these children would have symptomatic IS in which an underlying condition would be identified, of which maybe 400 children would be diagnosed with a brain malformation. Only about 100 children with various forms of epilepsy including IS would have hemispherectomy surgery and of these children, 2 may die…keep reading” 

 

You need to click over and read the rest of this powerful post.  Jacob’s mommy ends her thoughts with a question.  I shared my response in her comments.  I hope you will too.   

Comments

Post a Comment

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.
1 comment
Read more

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