Sunday, April 19, 2009

the post where I talk about toenails and poop

Today, my Lord humbled me.

You see, I had such grand plans of organizing and clearing out the clutter. Prepping for a May garage sale and motherhood got in the way. I was a bit irritated that I heard my name over and over and over again. And usually not for any good reason.

So I was snappy. And my kids were not pleased. Adam even said, "Mom if I were acting like you are, you'd send me to my room." So I grounded myself for a bit. Tucked myself in my room, with a cup of tea and I just prayed. Prayers for strength and wisdom to handle my life better than I was doing.

After my tea was done, I thanked Adam for setting me straight and being a good witness to me. And that humbled me greatly....

But God wasn't done with me yet....



Some of my readers have children much like my Jonathan and Micaela, who have fragile x. Often times, our lives don't look like they make any sense to an outsider. My normal is usually WAY DIFFERENT than most people figure. When people hear that I have a son that's 20, they usually say "Oh, is he off at college?" Oh, how I wish he was....That sadness, that stinging grief of having a child with a severe disability never truly goes away. It can get duller in time, but sometimes, it's so fresh, it's like Day One again.

I had that feeling just today. And as it swept over me, sitting on the edge of my tub, I just surrendered to it and cried. You see, I was cutting Jonathan's toenails. I was doing something that I do every few weeks. It's my normal. But today, as I was listening to him babble on and on and on, I thought, "If he were typical, there's no way I'd be doing this." It was unbidden and it came out of nowhere, and it floored me. When I started sobbing, Jonathan merely hugged me. This is not a child who initiates hugs very often. I was so grateful for it.

Ny normal would freak a lot people out, I know that. But it's all I know. And it's all he knows. At least once a month, Jonathan has bathroom issues and I end up having to clean him up. You wanna talk about humbling? When someone is truly at your mercy, it humbles you. It also exhausts you. It leaves you feeling like you'll never know any other normal but this.

But then I look at how far that kid has come. Sure, he still has wiping issues, but when he was potty training, he would SCREAM in horror when he had to poop. He would go a week without pooping. You know what that does to a body? Not good. I share this with my readers now, because some of you are here. Some of you might be here someday and I want you to know you're not alone.

I remember thinking he'd never walk. He took his first INDEPENDENT steps at age 2.5 years. And he was HUGE to carry everywhere.
I used to pray that he would talk. Now I just pray for the silence.
I used to think, "He'll never eat real food." when he would howl if he didn't have saltine crackers, (which he still loves), but now I just wish he'd STOP eating.

Fragile X is a journey. It's a marathon. I have to remind myself to pace myself.
But then again, I have God to humble me and remind me when I need it most.

I love my kids. With their quirks. Their challenges.
I am so blessed......and humbled.

3 comments:

Linda said...

Beautiful....just beautiful.

FXSmom said...

It must have been the week for it. I was wiping Matty and a little haunted about how un little boy he is starting to look down there. I thought about my other "normal" son and how most parents never see their kids puberty changes up close and personal. It oddly was a hope that I would never have to. But now I know that in 7 years when Matty is 20...I'll sit in the exact same spot with toenails and poop. Sometimes the hard reality just sneaks up doesn't it.

Stacey said...

I so understand, although maybe not in the same way, but I do grieve with you. Suzanne, you are such a precious woman. God created you for a time such as this. Thank you for sharing the real pain and the real you. I am praying for you through my tears . . .