top of page

Having a hard time today.

Kennedy reached out for Greg's phone day before yesterday--at the time tears came to my eyes and I exclaimed "praise God, it's the first time ever she's reached towards light!". Two days later I'm back to my skeptical self. I really do not think I have seen any concrete evidence of her sight beyond her responding to bright light by squinting, crying or looking away. And that varies--sometimes she doesn't respond at all.

Although I AM happy for the mothers that say their kids with ONH/SOD were born blind and then didn't start tracking until 6 months or 9 months or even 10 months and now they have functional vision/vision in one eye/even horrible vision--I now know I will never be That Mom. Kennedy is now over 14 months, and I have yet to see her track anything once. I always thought--from the beginning, on that fateful day January 3, 2017--that we would prove the doctor wrong. And Kennedy would see, and I would be That Mom.

"That Mom" that feels relieved because despite everything else, her baby will--and does--see. I cry every. single. day. thinking about what Kennedy is missing, what she will miss, and the utterly difficult situations she will face in her life. Even just existing has to be hard, when you have no idea if or when something is going to hit you in the head as soon as you move.

I've noticed she's started to lead any movement she makes with both hands in front of her, or with one hand on her forehead facing foreward. When she's sitting in the middle of the floor with nothing around her and feeling for something--anything--with her hands out and face looking expectantly for something to come into contact to no avail, it breaks my fucking heart.




It literally hurts so bad I feel like I'm dying inside.

And I feel like I can't go on.

But I do because she needs me. And I need her. And I need the rest of this world to wake the fuck up and realize that we--TOGETHER--need to take care of each other and thank fucking God for all of the gifts that we have.

Especially sight.

bottom of page