Numbers.

I have never been a numbers person. Ever. I only teach regular third grade Math because that’s basically the extent of my mathematical knowledge… just ask my 10th grade Geometry teacher! 🙂 But, since E was born, our life has become a numbers game.

Oxygen saturations. Heartbeats. Respiratory rates. Days in the hospital. Appointment dates and times. Insurance. Prescription numbers. Mileage to appointments. Calorie intake. Ounces in each bottle. Weight. Inches. Growth charts. Genetics. Deletions. Duplications. Blood counts.

But the numbers I wasn’t prepared to face were the ones we received in a Neuropsychologist’s office relating to her cognitive ability. Our bright, shining, almost 2-year old girlie pie tested out at an average of 7 months old. Her expressive language was that of a 3 month old. Her average IQ was on the bottom of the bell curve. The bottom. 55.

IQ-Bell-Curve

Via IQ-Catch.com

I thought I was prepared to hear it. I’m an educator. I know development, and I had been saying all along that she presented as a 6-9 month old…  I knew it. But I had never seen it on paper. Yet there it was, along with the suggestion that we pick up the intensity and frequency of her therapies. She is so low that the recommended therapy time was 40 hours a week.

And I was crushed.

It took her 21 months of weekly therapies to get to a 7 months old level. Twenty one. Her peers (according to Babycenter) are running, learning to share, taking care of baby dolls, and starting to help around the house. E, however, is chewing on toys and sitting… and that is after twenty one months of hard work. All of those numbers are more painful than complex fractions. They scratch and tear, they ache.

The week following the appointment was a rough one. The numbers were constantly swirling in my head. With no reprieve. Every time I looked at E the picture of the bell curve flashed in my mind. She had worked so hard… all for what? A 55. A lot of joy was stolen that week, but I had unlocked the door and allowed it to happen.

Then one day E did something that completely cracked me up and I was laughing so hard that I was crying. She perked up and smiled the biggest smile I’ve ever seen from her. She crawled over and looked at me, with this knowing look on her face. She had made her Mama laugh and she thought that was the greatest thing ever.

unnamed

I mean, look at that face. She knows how funny she is. 

 

How ridiculous was I? The numbers that matter will never be able to be counted, charted, or printed on paper. Her countless smiles. The numerous people her story has reached and touched. Each note of the songs we listen to on repeat. The long list of negative effects from her syndromes that are NOT present in her, each one meaning another miracle. Every foot of space she has crawled through the house as she explores and chases after us. Each page of the stories we have read. Every one of her long, beautiful lashes. The incalculable prayers prayed for her. The limitless, abounding, absolutely vast love of her Heavenly Father.

We have many years of charted, difficult numbers ahead of us, I know. Every year of her schooling we will sit and read those numbers, hear what they are supposed to mean for her, and make decisions for her future accordingly. It will never get easier. However,  those integer-less, countless numbers are salve for my soul. They remind me to leave the paper on the table, and look at E for who she is: a miraculous beauty who will continue to defy odds, evens, and any other numbers in between. 🙂

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