Thursday, April 28, 2011

Warning: SMA parenting not for the faint of heart

Today was the first time I've changed Lucy's mic-key button outside of a hospital setting.  I know, I know - she's had it since 5 months of age, how have I gotten away with it this long?  Well, I didn't feel like doing it at home and having Lucy's food start shooting out of her ear at her next feeding because I placed it wrong somehow, and I hate being the one responsible for inflicting any kind of discomfort on my baby.

Yes, I give her a breathing treatment every day, which she's not a huge fan of.  I do oral therapy on her, and when teeth are coming through it's all kinds of un-fun.  This is a step in a different direction.  More medical.  Less Mama.  More nurse.  And while I am fully aware that as a parent of a child with SMA it comes with the territory, I was willing to hand off that chore for as long as the good nurses at American Families would let me.

Those nurses sneakily make it look like it's routine, everyday business.  I got a training session there, where they kindly walked me through it as Lucy whimpered below me.  I don't remember it being as stubborn then as it was today. 

I got the old one out no sweat, but getting the new one in was a different situation entirely.  It would not go in.  I took a breath and pushed harder.  Still nothing.  Gave a little spin.  Nope.  By now, Lucy is crying silently and breaking out in red splotchies all over her face.  I felt like someone who should be on trial for torturing their child.  Praying, I continued to push until I felt it give and slide right in, like it had been trying to get in there all along and I was the one holding it back.

I felt like puking.  Not because I was off-put by the sight of the hole in Lucy's stomach, but because I had hurt her.  Mamas are supposed to make the pain go away, not be the cause of it.  In a world full of unfairness, I suppose this is pretty far down on the ladder of injustices, but it's just not fair that because of SMA, I have to do things that make Lucy cry.  And not just in a "no-I-don't-want-to-eat-my-vegetables" cry, but a "why-are-you-doing-this-it's-hurting-me!" cry. 

Boo to SMA.  I want to make *it* cry.

And now I have to watch for ear-food.

Oh, and just so you know - 10 minutes later Lucy was laughing at Daddy (the good guy), and has seemingly forgiven me.


Victoria Strong said...

You are such an incredible writer Barb. I'm guilty of never doing this un-fun job -- Bill get's this one. And I don't know if I have ever articulated just why I don't want to do it, but your words have made it so clear. Thank you for writing this.