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Heather Gray

Flawed...but loved anyway.

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Screaming Inside My Head

In October 2011 we took our daughter to the emergency room for what we thought was a concussion.  The doctor ordered a CT scan.

"It's probably nothing."

"It's just a precaution."

It turned out not to be nothing.  There was a mass in my daughter's brain.  A large one.

Surgery went well.  My barely-nine-year-old sweetheart delighted hospital staff as she recovered.  She was learning to walk again (with a walker), talk, feed herself, brush her teeth, and more - and she took joy in each new accomplishment.  Then we got the news that not all the mass had been removed.  There would have to be a second surgery.

I was angry.  It was an anger born of stress, exhaustion, and love.

I didn't want her to have to go through another surgery.  She was strong, though, and bouncing back so quickly.  She was full of energetic enthusiasm.  She didn't exactly want another surgery, but she wasn't really afraid.

At least not openly.

She had bad dreams.  Vivid nightmares where she would scream and beg me to save her stuffed monkey.  "They're trying to take him away!  They want to drill in his head!"  She was terrified and trying to protect her best friend.  The only way I could soothe her back into slumber was to promise I would stand guard and protect him.

In the two or three days leading up to the second surgery, my daughter became lethargic, less communicative, and just generally not herself.  Something was wrong, but nobody knew what.  The day of surgery came, and she spiked a fever.  The surgeon decided to change the plan and put in an EVD to relieve cerebral pressure, pegging that as the cause of the changes.

My daughter didn't wake up from the anesthesia.  Days went by.  Nearly three weeks after her first surgery we discovered that she had an infection in her brain.  By then the infection had already caused multiple strokes.  What we thought was a problem coming out of anesthesia was nothing of the sort.

She had a bad reaction to the first antibiotic they put her on.  Then the second.  Then the third.  There are only a few antibiotics that can be used for brain infections.  Not many can pass the blood-brain barrier. 

We spent Christmas in the hospital that year.  She turned another corner and started recovering again.  There was talk that we would be heading to rehab in January.  The stroke damage was severe, but she was able to follow commands and was gaining her strength back, doing well in therapy.  We were on the right track.

Around about that time, they discovered she had a freakishly rare immunodeficiency.  Nobody ever thought to check on this because she'd been 100% healthy for the first nine years of her life.  It was a fluke that the test was even run.  Children with this type of immunodeficiency don't live to see their first birthday without serious medical intervention, let alone live nine healthy years.  Because nobody knew she had an immunodeficiency, blood she'd received during transfusions had not been irradiated.  This came back to haunt us in the form of a horrific case of GVHD.

As we were getting ready for rehab, the neurosurgeon wanted one last MRI before giving the "all clear".   There was a spot on the MRI.  In our world, spots meant infection.  They went back in.  It turned out to be a blood clot, not infection.  But then…she contracted another infection in her brain following that surgery.  And she had more reactions to the antibiotics.  There were more strokes.

What I'm telling you here is only a fraction of what my baby girl endured.

I've left a lot out.

After five grueling months in the hospital, we brought our daughter home.  She was comatose and not expected to ever regain consciousness.  We cared for her at home as we had when she was in the hospital – with everything we had.  She got the best of all of us.  We took care of her as a family, talked to her, made sure she was wherever the activity was in our home, and loved her with everything we had.

We lost her less than a month later.

Life has never been the same since.

Last week I took my son in for a regular checkup.  The doctor became concerned about something he deemed neurological and ordered a CT scan.

I screamed inside my head.

The panic was instantaneous, the terror palpable.

I had to explain it to my son.

"It's probably nothing."

"It's just a precaution."

What else could I say?  I didn't want my boy to be afraid.

In my head, though, I was screaming.

I managed to contain the screams because I had a job to do.  I'm a Child of God and a Mom.  Those are my most important roles in life right now.  Even though my panic outweighed my trust there in that doctor's office, I take both of those titles seriously.

"It's probably nothing."

"It's just a precaution."

This time that proved to be true.  Sometimes, when the house is quiet, I can still hear the screaming inside my head.  It's going to take a little while for the echo to fade.  It'll be okay, though.  We'll get through this.

 

I am able to do all things through Him who strengthens me.

Philippians 4:13

(HCSB)

 

**This is not intended to be a complete, clinical, or critical accounting of my daughter's care.  It is simply a small peek into the emotional recollection of a mother who'd just learned her son needed a CT scan.

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When I read this it takes me back and my fear rises, so I can only try to imagine what moments/days like these are like for you. May your heart heal quickly through your love of family and Christ.

Oh my gosh, how terrifying for you all. I can't even imagine, I really, literally can not, and likely never will know what you have gone through. Bless your hearts, all of you. You have my continued prayers.

Heather your strength and Faith are awesome. Love and prayers.x

Heather, Bless you.



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