On being enough.


Lately, James has been having episodes daily for no apparent reason. We may be sitting watching some Mickey Mouse or pretending to go on vacations or cooking at his kitchen and then he’ll be staring at his hand. He’ll point to the one that is losing feeling or he’ll simply look up and I can tell something isn’t right because his eyes aren’t focusing together. Whatever the trigger, I’ll scoop him up ask him to lay his head down on my shoulder and rest. “It will pass soon if you just rest,” I’ll say.

When James was a baby I remember doing this and feeling so frustrated because he would squirm a lot. He wouldn’t or couldn’t understand that if he were to just hold still, to close his eyes he may be able to pass this moment without it getting worse. It seems easier now, even though he is heavier, that he follows this direction which inevitably leads to him falling asleep on me.

It’s always a fight in my head when this happens. Ideally it’s near a nap time so I can try and lay him down in his bed which works 50% of the time. Either he rolls on in or pops right back up with a drool-laced grin on his face wanting to go back to playing. But today I am just holding him because it’s too soon for a nap and I’m hoping this moment will just pass lightly.

I look to my youngest son who is obsessed with trains right now, “Cho choo-ing” to his heart’s content until he notices I am carrying James a little too long and he immediately drops his toy and runs over to me screaming “mama!” with his hands up in the air. “Oh Ben”, I say, “I can’t pick you up right now. How about a video on the IPad!”

Ben is going to be a master programmer for Apple by the time he turns 2. I haven’t the space in my brain or heart to feel guilty about his screen time. I watch him scroll past movies and press play on the ones he deems worthy. He looks up at me smiling happy to have his entertainment system. He begins to look around for that train he dropped before. He may have his IPad but he wants his “Choo Choo”, too.

These moments come and go in my regular routine. James may have one good day followed by 5 days in a row with episodes. Sometimes it’s more predictable but mostly they come without warning or care. I keep clinging to the idea that they are only temporary. That he won’t have episodes like this when he’s older. That it will be weeks or months between them. I know Ben won’t be 20 months forever either. My heart breaks and aches thinking of this. So today I’ll just sit with my son asleep on me, my youngest “Choo Choo-ing” and swiping away realizing that this is the best I can do and that it’s enough.