On February 13th I brought my calm, smiling and, I thought, healthy baby to the emergency room to follow up on an ultrasound. Now the doctors have cut her open, stuck about a billion tubes in her, pumped her full of formula and returned to me a child I sometimes don’t even recognize.

It’s not just that she’s a little chubbier and a lot pinker. It’s not the 8-inch scar, the bald spot or the tubes. It’s way bigger than that. When people used to remark on Ramona’s “delicate”, “exotic” or “different” look I would feel a rush of pride as if somehow Andy and I had gone above and beyond in the creation of this beautiful girl. I now know her small mouth, wide set eyes and exceptionally long fingers are a result of her deletion syndrome. What makes her so striking is not something Andy and I gave her, it’s something we didn’t.

I was telling Andy that I felt the doctors had lost interest in Ramona once she was diagnosed with 22q, like she wasn’t fixable, or didn’t have a chance at a happy life. He pointed out that they had probably just moved their enthusiasm to other more critical patients once Ramona had stabilized. Makes perfect sense. That’s when I realized the ugly truth. It’s not the doctor’s who are wondering if Ramona’s worth fixing, it’s me. In my selfishness and pride I was quietly contemplating whether it’s “worth it” to pour every ounce of my energy into a child who will never be “normal” and may not be “smart” or “successful”.

This morning I overheard Andy whispering in Ramona’s ear, “We love you just like you are. We’re all missing something. Don’t worry about it baby.” What a great dad he is. And I realize now that he’s right. We’re all missing something. Just like every cell in Ramona’s body is missing some genetic information, we are all depleted. It’s part of our fallen nature. But we manage to find joy, overcome obstacles and face our limitations. Ramona will never be an olympic athlete, she will never have biological children and she’s unlikely to have some high-powered career. But my hope is to teach Ramona to find the things that she is gifted at, encourage her to not sweat any closed doors that may face her and accept her status as a child of God, incomplete on earth, but perfect in His sight.

Love, Jane.