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When You Miss Your Child Even When You're Next to Her

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“You think you know, but you have no idea what it’s like to miss her.”

Someone said that to me. They were talking about what it feels like to be away from their granddaughter. I have never been away from my daughter really, but that feeling? The feeling of hopelessness in the wake of someone’s absence? I know that feeling very well.

These words were said to me because they were trying to convey the level of their discontent. I held my tongue, and I tried to appreciate the comment for what it was: an expression of how awful they had felt without this person with them. But the comment struck me deep in my heart and left me feeling defensive and angry.

No. I have never been away from my daughter, Ellie, but to say I have never had reason to miss her to a heartbreaking degree is not true. Memories of a hospital room full of beeping machines and IV pumps fill my mind, reminding me of the many times she has been in a drug-induced unconsciousness, making the idea of holding her in my arms a distant and coveted dream. I missed her then.

I recall her playing in a hospital gown in the pediatric surgical waiting room while we awaited the arrival of the people who would inevitably take her away from us; my conscious little girl leaving me to be replaced with a shell of her former self while she recovered from her open-heart surgery. I missed her then.

I flash back to the look on the doctor’s face as he delicately tried to deliver potentially devastating news. The look that said, “We don’t know why this is happening, but you need to prepare yourself for the possibility that she may not come out of this.” I was trying to figure out what he was saying to me when it suddenly occurred to me that what was happening to her was not routine. I was not supposed to see her eyes open and reveal a vacant emptiness that terrified me to my core. There was no Ellie behind those eyes, just a vast, empty space where my little girl had once been. I held her tiny hand in mine and felt so far away from her, I wasn’t sure she could find her way back to me. I missed her then.

It’s easy to forget these moments if you are not her father or me. It is easy to see her as she is now and let these nightmares from the past fade away into oblivion. I wish for that sometimes. I wish I could un-know the terror, the sadness, the desperation. I pray Ellie doesn’t remember any of it. But all the wishing and prayer in the world cannot undo what has been done. I will always remember it and be eternally grateful for the good days we are living and say my prayers every night that there will be many more good days to come. I will remember for everyone who forgets and try to be patient when careless things are said and know that the reminders aren’t as powerful for them.

I will remember those days and feel the familiar ache of my arms… And miss her.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: February 2, 2016
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