“She was abnormal from birth, you just didn’t know it.”

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. ❤️

4 thoughts on ““She was abnormal from birth, you just didn’t know it.”

  1. Thank God that the boys do not have that gene and that you and Brennan will be able to watch the boys reach so many different accomplishments. And Tori will always live in our hearts. God Bless.

    Liked by 1 person

  2. You are exactly right. You will marvel at everything they do. And you will take nothing for granted. It will be wonderful! That is part of your Tori’s legacy.

    Liked by 1 person

  3. Lesa, U am sure that the doctor saying that to you was a shock. I am sure that you never gave that a thought while Tori was doing “baby things” pre-Krabbe. Having gotten to know you through all your posts, messages & our short visit at Disney World with your family & mine I am sure that thinking about what she said was quite a shock because it was mind boggling to me as an “outsider”. I am so happy that you are being blessed with the twins & that from the start you dong have to sit on pins & needles re: another Krabbe diagnosis. God has blessed you & Brendan greatly. Prayers for the rest of your preganacy & an easy birth/recovery.

    Like

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