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The One Word People Kept Saying After My Daughter’s Diagnosis

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My daughter, Katie, was still so frail at 20 days old. She weighed only 3 pounds, wires lined her face and she slept most of the time. I had my concerns, but I still had so much hope for a normal life. When the neonatologist made his rounds, I said, “Katie is not taking a bottle like the other babies. I’m beginning to worry.” I fully expected him to say, “Don’t worry, your baby is perfectly healthy.” But the words that fell from his mouth shattered my world.

Cindy's daughter as a baby in the hospital

“I think your daughter has a neurological condition. She will likely go home on a feeding tube and oxygen. But you are a smart lady. You will be fine.”

He was so matter-of-fact, as if his words weren’t cutting through me like a knife. I couldn’t speak; I could barely breathe. I was in complete shock. During the following weeks, it was my mission to prove him wrong, as if his words determined the future. I would interrogate every nurse wanting to know his or her opinion. Some agreed with the doctor, others did not, but they all said, “She is going to be fine.” 

Those words again. What did fine mean? Back then it meant playing hide-and-seek, the pitter patter of tiny feet running through my house, Cheerios thrown by the handful to the floor — it meant things would be the way I always imagined they would be. His words destroyed that because I was not fine with oxygen or a feeding tube or whatever else came with the neurological condition he so willingly threw our way.

Cindy and her newborn daughter in the hospital

The unknown nearly drove me crazy. All the genetic testing results were fine. For at least eight months, we lived that “fine” rollercoaster. The words, “She is going to be fine” came at me like bullets from a gun. Everyone said it because they truly didn’t know what else to say. But guess what? Katie is fine, I am fine and my perfect little family is fine.

So to the neonatologist, I would say, “Thank you! Thank you for your honesty and for respecting me enough to tell me I was going to be fine. You didn’t know her prognosis for sure. You could’ve beaten around the bush and ordered more tests or told me to wait and see, but you simply said what had to be said.”

And to the “brand-spanking-new-first-time-mommy” me, I would define the word fine.

Today, fine means loving my daughter for exactly who she is. Fine means bad seizures, tube feedings, IEPs and fear. But it also means success with a new communication device, bright smiles and happy days.

You see, fine is knowing no matter what happens in life, I believe God has us in the palm of His hand. To me, fine means Katie is exactly who God wanted her to be, and I believe she’s a pure and sinless soul who brings people closer to Him.

In this world, our plan is not always the plan I believe God has for us. But I believe His fine is so much better, so much richer… His fine is perfect.

Cindy and her daughter

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Originally published: November 6, 2015
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