But the guilt that comes with it…

It’s a damp, dreary day out. It’s supposed to rain at some point, and damp dreary rainy days equal worse pain days for me.

And, for N, as I’ve noticed over the last few years. On rainy, damp days, N doesn’t want to do anything but cuddle on the couch and watch movies. He’ll try to play a bit, but he’ll bring his toys to the couch instead of staying on the floor.

This morning, he walked slowly over to me and climbed up on my lap. I asked him what was wrong, and he told me “it’s my knees. They hurt me. I need pants” (he was just in a shirt and boxers, as he didn’t want to put them back on after going to the bathroom earlier).

Then he wouldn’t let me touch them without whimpering. He wouldn’t straighten his legs out for me.

I’ve noticed that his mobility in the knees and legs is strained. As in, if he’s wearing a pull-up and I need to change him, trying to lift and bend his legs is hard to do. He whimpers, and they feel locked. I ask him if he’s struggling, and he says no. But, he’s so young that its hard to tell if he is struggling or legitimately cannot move his legs like that.

His appointment is in September, and as he’s not considered “high priority” so I can’t really get an appointment sooner, but I’m still gonna try for a cancelation appointment, which means we to in when they have a cancelation. That’s always hard though because usually they don’t know until last minute and we’re an hour and 45 mins away.

The guilt in moments like when he climbed up on my lap and told me he was hurting consume me. I feel so guilty and powerless. I don’t want my baby boy to hurt. I don’t want him to have any issues. I don’t want him to find day to day things that involve mobility a struggle. I don’t want him to suffer in pain. But the reality of it is…he might. He is. Sometimes, anyway. It could get better, it could stay the same, or it could get worse. I don’t know, and I won’t until it happens. But the guilt…the knowing he’s hurting because I’ve been there, I am there…it hurts my heart.

And I know, it could worse and truly I am thankful that its not worse. I don’t mean to whine when so many people have to watch their children suffer in worse ways.

But alas, I think we can all truthfully say we don’t want our children suffering at all in any way, and it pains us more than anything to witness it and be unable to do anything about it.


  1. Tina

    🙁 Poor N, and poor you having to deal with pain yourself and watching his. I don’t know what else to say other than I hope the weather improves so you both hurt less, and I’m sorry you’re both sore. 🙁


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