Tuesday, June 28, 2016

Anticipatory Grief

Miles, 16 Months Old
When doctors placed Miles on hospice in January 2016, this term began getting tossed around a lot. Anticipatory Grief. I had already named it Pre-Grief. I still think mine is cuter. I think sometimes when they make something sound more formal, they think it feels less painful. They place children on hospice that they don’t think will live another 6 months. It was a very hard choice but we knew we needed additional resources at home for him like visits from nurses and access to medications.

“You are experiencing anticipatory grief,” the social worker says to me. “Oh you mean pre-grief? I know all about that darlin.” I’m always trying to lighten the mood in these meetings. “I live in a constant state of limbo. Happy and sad. I never quite know what to feel at any moment. Some days it feels like I’m dying.” They deal with death everyday but I’ve noticed hospice workers don’t attach a lot of emotion to it or ask about your emotion. It’s matter of fact. You get the sad eyes but that’s where the emotion ends. They are of course incredible people but I haven’t met one that’s lost a child. It’s a small population.

Pre-Grief sounds like you get a nice little cushion period to prepare for something horrible. But it’s different than that. I’ve tried to identify it a lot over the last 6 months. This is all I’ve come up with:

You are never fully in a moment. You want to absorb every playful, perfect moment with your child but you are always reminded that it could be the last.

Some days it’s hard to be near your child. This is the hardest to describe to someone. When I hold Miles, I can be overcome with emotion. A piece of my soul in my hands, looking up at me and holding my cheek. And he could be taken away. The insurmountable love can be too much to bear. Love really does hurt.

You stay up all night; mind racing, searching for answers. And all day you just want to sleep and get through.

You numb your mind with TV because you can live in a world for a moment that isn’t…this world.

Your husband and you try to write a will if anything happens to you but there is no one to take your kids. No one that could possible handle this life and no one you would burden to ask.

You beg God to take you first. You know it’s selfish but you can’t outlive your child. You just can’t.

People ask how life is and you wonder if they noticed that you drifted away like a leaf in the wind awhile ago. They are just talking to a shell.

You forget conversations. You either word vomited too much or stayed closed off. People get mad and take it personally. You realize just how alone you are in all this.

Most days you thank God for your life and then silently day dream about how it would be if this had all turned out very different.

You lose friends by the flocks. It’s like hydrogen peroxide in your gaping wounds. You had no idea you could feel that much pain. But the few that remain are solid gold.

Your insurance drops coverage on your son. You rack up impossible amounts of medical debt. You put it in a pile and go back to sleep.

Your kids become very good at mimicking your crying. “Mommy is sad again,” as they sniffle softly and look at you with the deepest concern you have felt all year.

Your skin becomes so thick yet your heart is like paper mache.

You stop getting invited to barbeques, movie nights and parties. You convince yourself that they would have invited if they could have.

Your son has nights where he is barely hanging on. You are doing CPR off and on for hours. Your husband and nurse are frantically trying to save him until you are all completely exhausted. You finally sedate him with Morphine and Ativan. Your husband and you look at each other with no words, but the same thoughts are in your mind. What on earth is happening? Your nurse can barely breathe. It all happens again the next night.

You don’t fight the doctors, therapists and insurance reps anymore. You used to go in guns blazing and now you go in accepting defeat.

You know you are depressed to some level. But it’s not a situation that’s going away. You are forever changed.

You still try to serve others. Getting excited for your friends’ lives; feeling their joy and pain. You throw birthday parties and baby showers and try so hard to walk the walk. Some days you pull it off.

You read stories of other mothers that have lost children. “Why are you doing that to yourself?” friends say. Because this is your reality now.

You hang on…no, you cling tightly to the hope that this will all just get better one day and your child will be ok.

You ask your husband before bed one night, “Do you think I will ever hold Miles with no machines? Where I can squeeze him and walk with him and not worry?” He pauses for awhile. “No I don’t,” he responds with such sadness.

In your lowest of lows, you are acutely aware that this desperate, deep, heart splitting pain isn’t even a thousand of the pain you would feel if your baby died.

For a moment each day, you hold your children in your arms and they giggle and laugh and look at you like they couldn’t love another human being more. You have made their life perfectly loved. For a moment it all melts away and you forget all suffering in the world and you are present for just a moment. You are just a mom, holding her kids and God reminds you, “I’ve got you.”




  1. Your writing has moved me and I am sure that I'm not the only one. The quote snippets have a way of relating to more than just having a child with a disability, you are reaching at pure struggle that many suffer in this beautiful world. When you said that you thank god for your life and then can wonder how it would all be,if it turned out different...that moved me specifically. Allison, I'm sure you hear it often, but you must realize it's true: you are amazing! From following God, being a wife, mother to miles and Weston, the miracle you are growing now, and finding the time to write this piece.... I hope you continue to write, it's beautiful on so many levels.
    Much love to you �� And the family.

  2. Sad, my heart emoji came up as question marks inside of diamonds. <3 this heart will work better. :-)

  3. Hi--I'm a friend of Sharon Himsl's. I've been following Miracles for Miles since your sweet baby boy was born. We have a granddaughter in a similar situation. She was born 11 1/2 months ago, and has never left the NICU (or PICU) at Sacred Heart Children's Hospital in Spokane. It's been so painful for the family, as there are 3 other kids and the family itself lives 2 hours away from the hospital. Siloam (our granddaughter) was born with Down Syndrome and many other issues as a result. She has suffered continuously in her short life. Whenever we hold her, she is draped with wires and tubes, and is connected to machines and monitors.

    We always thought she would be able to leave the hospital one day, but we now have serious doubts that it will ever happen. She's already had seven surgeries, and she keeps getting infections. Even if she does survive, we don't know about the quality of life. She hasn't had the chance to learn to hold her head up. We doubt she will ever walk or talk.

    So anyway, now my daughter will be entering into some ethical conversations and so I suppose we're going through the same thing as you are at this point--anticipatory grief. Or perhaps God will simply take Siloam, and lift those considerations off of our shoulders. She has been doing especially poorly lately.