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McGee family photo at sunset

We’re told that normal is good. And that to stray outside of normal is bad. We learn that at a young age and it becomes the baseline of what we hope for as parents. Normal kids and a normal family.

Well that’s not what Annie and I got almost 17 years ago when our son Louie was born. When he was born, he had to spend a week in the NICU with a blood abnormality that the doctors pegged as either ‘no big deal’ or a ‘long term issue.’ That was a pretty big range for us as new parents to cope with. After 6 months, we found out that it was in the ‘no big deal’ category. We then cruised along in normality through the birth of our daughter Carmella and countless nearly normal days. After five years of parenting through stitches, fevers, sleepless nights and a lot of great times – we thought we had things pretty well under control. Then out of left field, the news. Louie was diagnosed with Stargardt, a rare eye disease that steadily robs his central vision. No treatment, no cure, not normal.

There’s a lot said about the ‘new normal.’ I don’t buy it. There is only one normal and we had just lost our grip on it. We could now count on accommodations at home and school, special teachers, and a whole host of technology solutions just to get through each day.

But then, we started to notice opportunities. Ways in which Louie was reaching beyond what is ‘normal’ and becoming the person he was meant to be. When he was about 10, he told us that he thought of the hole in his central vision as sort of a Super Power. With it, he could look someone straight in the eye and although he couldn’t see them, he could instead see right through them. Perspective, literally through the eyes of a 10 year old. Kids will do that.

Through it all, one lesson that blindness teaches me almost every day is that even though we confront obstacles we all have the opportunity to reach beyond and be amazing. And after almost 17 years of parenting (still a rookie, making mistakes daily), I’ve let go of ‘normal’ and am blessed with a crazy wonderful life.

“If you’re always trying to be normal, you will never know how amazing you can be.” Maya Angelou

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