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| 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.”
