IMG_4627love you

I don’t care what the baby books say about rocking your child to sleep.

Sometimes you can just chuck that baby advice right out the window.

I’m going to rock my son to sleep anyhow.

I hold him close, while he stares up at me.

In the moonlit room where the windows face the old maple tree, the branches reach towards the sky, like arms reaching toward heaven in prayer.

Sometimes when you’re hurting, it seems the whole world goes on, sleeping soundly in their beds while you wonder how you can go on living.

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We got the diagnosis in August. You were just 9 months old.

Leigh’s disease, the doctor said.

You didn’t even know you were sick as you squirmed in my arms.

No cure. Life expectancy 2-3 years.

You smile up at me and my heart rips open.

You don’t even know.

That’s when I decide to put away the baby book in the back of the closet.

I skip the advice on sleep training.

Let me rock this baby while I can, while I still have time.

It becomes my evening ritual, like praying the hours, I rock you while the evening fades to stillness and black, where prayers and tears mingle.

I rock you knowing there is only so much time.

I hold you while my heart breaks.

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Because if I this is all I get, then let it me absorb every molecule of you, every scent, every breath, every touch of baby skin and lock of curly hair while I still have you in my arms.

The truth is, I’m not trying to get you to sleep, but trying to fill my heart up with every part of you.

For the sick and the healthy, we’re only given so much time. We don’t even know.

The things that matter in life seem so clear when the pain cuts deep, when suffering is the road we’re called to, when the cross seems too heavy to bear.

The rocking is for me as much as you. I can trace your every feature as your head rests in the crook of my elbow and my arms encircle you.

This is what I know: Time spent on love is never time wasted.

The question isn’t whether we always did things right, but that we loved well.

So I forget the advice of the baby sages, the ones who train newborns to sleep through the night, the experts who tell you not to rock your child.

Ask any parent who’s raised their child whether they remember the sleepless nights as much as the sweetness of holding their baby.

The answers are so clear when we look back. We will not remember the work we did, the tasks we accomplished, the way we followed all the rules.

What we remember are the moments we loved each other well.

Because there’s only so much time.

Only so much time until I meet you in the light of heaven.

Until I rock you again.

Sara

2 comments on “The baby advice I ignored because my son was dying”

  1. Sara, this spoke to me for my daughter is Stacy Callahan and we all go to Emmanuel. When she had her Landon down in Indy, they have a special private nursery where they kept him. It was decorated like a nursery in your home. They dressed him in a sleeper wrapped him in blankets and laid him in a bassinet. Any of us could access this room by a pin pad at any time. In this room was a rocker, and I would go in there pick up my first grandson and rock him, and sing to him, and talk to him. I tried to memorize every little thing about him, I tried to cram a lifetime of hugs and kisses and love into a couple of days. I don’t know your pain of knowing your time with your precious child is short, I can’t imagine….but as I read your words I was transported back 5 years when I was holding him for what I knew would be the last time and I couldn’t understand the depth of my pain and how helpless I was in the face of my daughters pain. It helps so much to know others know and we prayed for you as you walked your road. Thanks for your vulnerability.

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