Monthly Archives: June 2014

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 Pride

Those of you that follow us on Facebook know that I promised you a happy post. I told you we were having some good days. And yes, that was true. Unfortunately, we’ve been struggling a lot more recently with James’ health, his GI system in particular, and this overtook us before I could properly revel in the good days. I fully appreciate how unfair this is.

One of the most difficult things about parenting a child with special needs is seeing the good times when they are in front of you. There is an undercurrent of sadness and anxiety in parenting him that I’m not sure will ever go away, and so when things are good, sometimes it is hard to recognize that. In this instance, we saw the good time, but the bad thing swept in and I was surprised. Again. You’d think I’d be used to this ebb-and-flow of joy and sadness after the past (almost) four years, but I’m not. I may never be used to the surprising and unexpected new challenges that crop up when we least expect it. 

But, let’s go back to the good days. James started sitting up by himself (generally in the bed or on his mat at naptime), and this is a big deal. A tremendous deal. It’s been a long time since he’s passed any sort of milestone, and we’ve even seen some regression this year as we’ve dealt with his health problems.

So, imagine my delighted shock to walk into his room and see him sitting up in the bed, looking at me like butter wouldn’t melt in his mouth. 

I asked Mr. Fly whether he’d sat him up, and he said no. Still confused about what was happening, I laid him back down on his back and told him to go to sleep. Just as I was walking out of the room, however, he did it again. He sat up. By himself. And he looked at me again as if he knew all the universe’s secrets and was giving one of them to me right then, pressing a sweet into the palm of my hand. 

I cried, shouted to Mr. Fly to run and see this, and of course we videoed this for posterity. There were more happy tears at school when he repeated the same behavior. It is thrilling and unusual to see James able to control his body, and we are all so proud of him.

Pride, however, is not a simple feeling. My mother used to say of me as a child, as I often insisted on wearing some uncomfortable headband or pair of shoes, that “pride knows no pain.” Perhaps that’s true, but as a parent, pride feels exactly like pain. It is both sharp and aching, sudden and deep. It is a cliche of working with special needs children or parenting them that the joys are all the sweeter for the sadness and struggle that comes before them. I guess that’s true. The pride is sweet, all the sweeter for the high price we pay to feel it. But the pain is there too. 

I haven’t seen James sit up in a week or two. I don’t know if he is still doing it, or if he’s decided that it is no longer interesting. This happens sometimes, where he will master a skill and then drop it, as if he simply couldn’t be bothered to spend his energy on this anymore. We hope that if we can make some progress with his stomach issues, he will feel better and come back to himself a bit. 

My pride knows pain, but I will surely cheer again the next time I see him sit up. 

Thanks to all of you for your support and sweet thoughts over these last few difficult weeks. 

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