These words have stuck in my mind since meeting yesterday with the neurologist who diagnosed Tori.
The sentence was spoken with the same gentleness she used on diagnosis day, and it came after we discussed the impending arrival of the twins.
I remarked that I couldn’t wait to see them achieve milestones that Tori never did, though those moments might be emotional because she never did.
And that’s when she gently said those words: “She was abnormal from birth, you just didn’t know it.”
I told Brennan that evening what she had said we pondered her words. We were new parents, and there are ranges for each milestone, so we weren’t worried until Krabbe had set in and something was clearly wrong.
But, in hindsight, the neurologist is correct.
Tori never had great head control. She never truly laughed a rich, full belly laugh. Tori never slept well. She hated tummy time. She never ate enough (and threw up much of what she did) and was tiny. Tori only rolled over one time at five months old, right before Krabbe overtook her brain.
It makes us wonder what else was abnormal.
As the boys grow, learn, and develop, I know our joy will be even greater as we watch in wonder at their accomplishments and milestones. We will watch in awe as they learn and develop. It will not make us feel sad for Tori, but rather overjoyed for them because they are HEALTHY. They are Krabbe-free. And they are going to LIVE and grow.
And we can’t wait. ❤️


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