Tag Archives: faith

Did We Ask God for a Child with Special Needs

Big Boy is a smart kid. He’s book smart and just smart-smart. He’s starting to ask questions and say things about James that can unmoor me in an instant.

This morning, from the backseat of the car, we were discussing what we should have for dinner. As our fridge is broken (Because we need one more thing to deal with right now. It was making a hideous grinding noise that we first heard upon opening the door from being out of town for the weekend. The crime scene fridge-side was gory in the extreme.), I told him that dinner would at least be bacon. Because we had a package of bacon that partially thawed when the freezer shut down, and now we needed to cook it.

Bacon for any meal is never a bad thing chez Fly, so we both happily pondered this for a moment. Then, Big Boy dropped the bomb.

“Mommy, did you ask God for James to be special?”

I stammered an incoherent response about how we asked God for all of our children and that we didn’t know James would be special in the way that he is and that Daddy and I love you all and weren’t we glad that we were having bacon for dinner and wasn’t having to clean out the freezer kind of fun?

And then Big Boy asked me, “Well, Mommy, did you ask for Baby Girl not to be special like James?”

And as I drove in silence, I thought about truth and lies and the things we tell ourselves to protect ourselves, and the things we tell the ones we love to protect them, and I didn’t want to lie to my son.

After that beat, I said, “Yes. We asked God for Baby Girl to be just the way she is. She’s special, but not special like James.”

From his backseat booster of wisdom, Big Boy said, “Well, God knew that James couldn’t play with me and I really needed somebody to play with, so he had to make Baby Girl like me.”

I asked him if someone had told him that, and he said no and asked me why I asked that. And I told him that it was just a mature thing to say. (And then I tried to explain maturity, which is kind of an abstract concept. I had to boil it down to “acting like a grown-up,” but that’s not wholly accurate. I wouldn’t say that explanation went as badly as the whole “God’s magic thing” on Easter, but it was close.)

What I didn’t say at the time, and I wish I had, is that I am so thankful that he and Baby Girl have each other, and that we all needed her, and that the sibling bond has been one of the great joys of my life, and I hope they are close for their entire lives. I should have said that I am renewed and delighted and filled with hope for the future when I watch them play, or when, last night, she reached out her arms to him and asked for a kiss.

But that’s all probably a bit heavy for a Tuesday afternoon car ride. There is bacon to eat, after all.

The Family Fly loves bacon.

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On grace.

I don’t talk about God or religion much here. It isn’t that I don’t think about them (or Him), but I’ve never been particularly comfortable talking about faith in the abstract or my faith, in particular. (Hey, I’m Presbyterian. We’re called the “frozen chosen” for a reason.) I’m not sure I understand what faith truly is. But what about grace?

Like no doubt many others when confronted with a major life struggle, I had those “Why me? Why my son? How could God let this happen to my perfect, perfect baby?” moments. I still do.

I had one of those moments on the way back from Thanksgiving when James had a seizure in the car.  This was the holidays, it was supposed to be happy, we were supposed to be thankful for our blessings.

But what do you do when one of your blessings has a seizure, when seconds before you were thankful he was peacefully napping? When you thought he had outgrown his seizures and that wasn’t part of your life anymore?

You cry, you wail, you gnash your teeth. Your husband pulls the car over, and he cries. This is a man built of people who are salt of the earth, warm and solid Midwesterners. He rarely cries–he gets things done. When he’s feeling feisty, he gets shit done. But that Thanksgiving weekend, you cry together, even though the seizure is over in a matter of seconds and your son just looks at you afterwards with utterly peaceful eyes.

And your older son asks you why the car is stopped, and why Daddy is crying (he doesn’t bother to ask why Mommy cries, because he knows it is simply an essential bodily function for her, like her soul has to pee every day), and you have to explain to your infinitely innocent five-year-old that his brother had a seizure. It’s a word this precocious child heard every day of his life for a year after his brother was born, and yet it is a word he has never uttered. To hear him speak it is to feel the devastation of your baby’s diagnosis all over again.

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