(I started this post a month or so ago and saved it as a draft…I feel it is still an informative post so I finished it, though I changed some of the wording to fit our current situation.)
We realized a month ago that we hadn’t heard Tori sneeze in months.
Sneezing. Something we all do without trying.
We can’t remember when it last happened, but it definitely hadn’t happened in months.
That was our experience with Krabbe – Tori lost abilities suddenly and we didn’t realize they were gone for quite awhile.
When she went to Heaven, she could no longer smile, laugh, cough, swallow, move, sneeze, yawn, or even breathe well without supplemental oxygen.
She couldn’t process images quickly (though she could still see).
She never crawled, walked, or talked (except babbling pre-Krabbe).
She couldn’t squeeze our hands or grip things.
She couldn’t even cry.
She wasn’t able to express herself any longer, and that broke our hearts.
As the brain continued to deteriorate she lost these abilities mentioned above and there are likely some we still haven’t yet realized that she lost.
Tori didn’t just lose these abilities – she lost her life to Krabbe.
Krabbe is horrific and watching your baby live through it – and die because of it – is something we wouldn’t wish on anyone.
Take a moment and write to your state legislators at this link to encourage them to screen for Krabbe at birth: http://www.huntershope.org/site/PageServer?pagename=unbs_takeaction
This is why we continue to fight. Our calling is clear and we won’t stop fighting until every child has a chance at life.