Surviving A.D.E.M. From a Mom’s Point of View


     Over the Christmas 2014 holiday, mine and my family’s life was turned upside down by a mysterious disease that started out as a common cold with a runny nose that progressed into flulike symptoms, that progressed into pneumonia -like symptoms, that progressed into a massive sinus infection, that progressed into severe headaches that woke him from a deep sleep, all within about a week and a half.  He was eventually admitted to the hospital when white blood cells were found in his spinal fluid from a lumbar puncture taken the second time we went to the emergency room.   We were the unfortunate winners of the A.D.E.M. lottery, and my son quickly changed from a normal, 9-year-old boy, to a child who was quickly deteriorating and in a relentlessly severe amount of pain.  It was almost unbearable, for us, as his parents to watch him suffer his way through the roller coaster ride of ups and downs of the disease.

     I wrote the poem below, on our first visit to the emergency room, before we even knew what kind of journey we had ahead of us.  I wrote as I sat silently, watching my son suffer through headaches while an I.V. dripped fluids into his veins.  I am sharing this in hopes of helping other parents who are experiencing ADEM,  with their own child.  I will tell you, it will get better, but it will take time.  The only way we were able to survive this experience was through the countless prayers that were made in our son’s name, lifting him up, lifting his doctors up, lifting us up.  It is a walk that is so much harder if you try to do it alone.  

     We are all still trying to wrap our heads around what happened, but we are all getting stronger day by day.  My son spent nearly 3 weeks in the hospital, one week in an in-patient rehab center, and has now completed his second week of out-patient rehab for physical therapy, occupational therapy, and neuro feedback therapy.  He will likely be ready to go back to school within the next week or two, and his personality, physical abilities, and speech abilities are almost back to 100% the way he was before he got so sick.  It is truly amazing how far he has come, considering, about 3 and a half weeks ago, he could barely walk, was catheterized, spoke like a stroke victim, and could barely remember where he was half the time.  At one point, he did not even remember who I was, which was my most horrifying point in this experience.  He has almost completed a steroid treatment that began with a high dose given intravenously 2 times a day that tapered down to a liquid oral form that we will be giving him every other day for a few more weeks.  

A Mother’s Oath

It’s been a long haul.
The nights have been long,
The days even longer.
How much more can I take?

I don’t know how, but I’m still here.
I’m not going anywhere.
I wish I could absorb all your pain,
I’d do anything,
Just to see you smile again.

Close your eyes.
Rest, baby.
Rest for me.
I’ll still be here, holding on for you.
NEVER GIVE UP
This is what moms do.

Put on that face,
That fearless warrior face.
Look strong while
we’re caving inside.
Be positive, when all we want to do
is cry.

We are the warriors.
We wait patiently.
We serve our people,
strong or weak.
We overlook our own weakness.
We reach from above, we reach from within.
We care, relentlessly, fearlessly,shamelessly,fiercely
for our kin.

This is who we are.
We are moms.

Original poetry written by Marie Stephens ©2014

 

All royalties from the sale of this 8 x 10 inch cork print will go to Team Hannah! Hannah was our next door neighbor at the hospital who is fighting the battle of her life against cancer.   Click the link below to order.

 

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Moms Have Super Powers


I am your mother.

I have super powers,

powers beyond compare.

The power to make you laugh so hard you nearly pee your pants

from  just one twitchy stare.

I can light you up with just one glance,

my smile can make your day.

My hugs,

my squeezes,

they are what pleases

your heart…they melt your fears away.

 

You are my children,

extensions of me.

You have the power

to fill me with glee,

with madness,

with sadness,

with anger,

with joy,

with pride,

with fear,

with happiness,

my boys.

My boys fill me with power.

The power to love,

to live,

to give freely.

To be myself without fear

to feel accepted so deeply.

©Marie Stephens 2014 All rights reserved

 

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