My Beloved Boy

It's Monday night a million days ago since I last wrote about faith and God's ever-reaching arm.

My faith is being tested.
Not that I can abandon it,
but I'm swimming in deep water here
and these past 72 hours have found me at times gasping for air,
looking
begging
for God's arm to reach down
from His heavenly spheres
into my small life and remove this
desperate pain from my heart.
Once again, I am in my own Gethsemane Garden.

Last Friday,
instead of going to Time Out for Women in Denver
I chose to take Dean to our ward's
Trunk R Treat.
You will never meet a boy who loves
Halloween more than my boy.
He longs to be more than he is,
more than his disabilities allow him to be--
Halloween provides those moments for him.
In years past,
he has been an alligator, a doctor, a Phantom of the Opera,
and on and on...
he loves dressing up.

So I gave my tickets up to someone else
for Dean's sake.

We arrived at the Church just before the event started--
meeting his respite care provider, Tom for the first time.
After I parked the car,
I was searching in my purse for a notepad and pen
so that I could get Tom's number
to call him when it was time to leave.
We'd already said we'd drive Dean to his house afterwards.
I finally found a pen
and as I walked around the back of the Suburban over to Tom's car,
I passed Dean as he made his way to the sidewalk,
I patted Dean on the back and said,
"Hey, Buddy." and kept walking towards Tom.

I heard a thump behind me
and looked to see Dean sprawled out on the pavement,
face first.
I ran to his side,
he was unconscious.
I kneeled down next to his face
and saw a fast stream of blood
pouring out of his nose and mouth
and gutteral sounds from his throat.

I lost it.
I yelled for someone to call 911.
And yelled again for a someone to get a doctor--
we have alot of doctors in our ward
and I wanted one right. now.

We rolled Dean over,
still unconscious, blood covering his face,
his brand-new Clown costume shirt,
and I cradled his head in my lap.
Cars were pulling into the church parking lot,
but were diverted around us,
by I don't know who,
and finally a dentist and a doctor came over to check out Dean.

He started to come around,
only to have a seizure and pass out again.
I was beside myself.
Apologizing over and over to Dean--
I hate seeing him hurt more than I can even say.

The EMT's got there pretty quick--
I was trying to explain to them that Dean has cerebral palsy,
that his cognitive age is between 3 and 8 years old--
that he doesn't register pain like we do.
One EMT asked Dean if his face hurt,
to which Dean uttered "un-unh" (no)...
as they loaded him on a backboard,
he said outloud,
"I love Halloween." and then had another seizure and passed out.

The EMT's loaded him into the ambulance,
and as I got into the Sub with Kent,
I finally asked about Bee--
was she OK? Who was with her?
Someone said they'd taken her into the Church because she was cold
and upset.
Bishop said his family would take care of her for the night and not to worry.

I felt guilty not being able to comfort her after she had most certainly witnessed at least
the beginning of this mess.

Still, we had to get going and follow the ambulance to the hospital.

We got there before it did...I don't know which way they had to take? but we sat in the waiting room
for a few moments before the clerk called us to go to the ER room where Dean was waiting.
I walked in to see Dean still strapped to the backboard and a neck compression brace on...
he was trembling, so I asked the nurse to bring us some warming blankets.
He didn't know why he was there, or what had happened.

Pulling a rolling chair over, I sat next to him and talked to him,
trying so hard to control the tears.
I HATE that this happened to him.
WHY?  Why would this happen to him on the one day he has been looking forward to all year??

It didn't make sense 72 hours ago and it still doesn't make sense today.

His nose is bloodied and bruised.
His front teeth are loose, one is jaggedly broken.
His lips torn up, bloodied and swollen.

Why??  Such a little joy in his life, this holiday, and this.

For the next five hours,
through the stupid waiting games of the ER,
and staff shift changes,
Dean went in and out of consciousness.
Never complaining.
Never demanding a thing.
Completely helpless.
And I cried and prayed for the outreached arms I longed for...
long for.
I texted the older kids right away;
Danielle called Dara in Alaska and told her.
They both called while we were in the ER.
Dara told me she'd sent flowers to me that morning--
she didn't know why, but felt "impressed" to do something nice for me.
(I rec'd them on Saturday afternoon...a tender mercy? yes.)
Danielle put our names on the Houston temple prayer roll.

Our Bishop and his wife and the Relief Society President all came to the hospital
 for a little while out of concern of course and to comfort us.
They don't know my amazing Dean.
I shared how much we love him
and how very brave he is...
while he laid there bloodied and bruised.
I told them what a privilege it is to be his mother.
Trying really hard not to cry.

The ER doc came in and said the test results showed
--he was severely dehydrated (thus the passing out at church),
--he has another cyst/tumor on his brain
--no broken or fractured bones in his face or mouth.

Our visitors left and we were getting ready to go,
as the nurse removed Dean's IV,
he had another seizure so then they had to give him a shot
of addavan,
and watch him again for an hour.
Finally ready to go,
two of the nurses shared personal feelings with me,
of how meeting Dean had blessed them and they sent us away
with hugs and prayers for a quick recovery.

We brought him home with us.
There was no way I was going to let anyone else take care of him
in this condition. No way.
We got home close to midnight,
and tucked him into bed with pain meds.
Just as I got into bed,
we heard a loud thump--
ran to his room
and found he'd fallen out of bed...
he was sweaty from head to toe--
I think he'd had another seizure,
as that is one of the things that happens.

Gave him a drink of water,
tucked him in again--
and watched him go back to sleep.

I didn't sleep that night.
I rested.
I cried.
I prayed and begged for understanding.
But I didn't want to go to sleep.

Dean spent the rest of the weekend with us.
He slept almost all of Saturday.
Waking up just for some food and drink and potty.
Never complaining.

Sunday he came around a little in the morning,
and asked to go to church.
We sent Bee but didn't go ourselves.
Kent had to work (ugh!) and Joseph stayed home to help me.

Dean took several naps off and on again,
waking up for soft foods and lots of water and juice.

He sat next to me on the sofa,
holding my hand
and my nose (his sign of affection since a baby)
and saying to me over and over,
"I love you, Mom."
"I love you, Mom."
"I love you, Mom."

This morning, he was feeling a little better;
Asking if he could go to his day program (he couldn't),
and he had a dental appt which his HHP was going to meet up with us
and take him to, since I am an emotional trigger.
Dean sensed something was up,
and got anxious, even taking a swing at me in the kitchen.
While it was disturbing, I knew it wasn't about me.
He's scared. Heck, I'd be scared too.
I went upstairs and took a shower while Kent (who stayed home from work to help)
watched over Dean until it was time to go.
We met up with the HHP,
gave hugs and promises of meeting up again this week.

Watching Dean climb into the HHP's truck sucked.
As they pulled away.
my emotions got the best of me and I just sobbed..
for Dean. for me.
I sat in the car and just bawled.
Kent hugged me,
said he doesn't understand what the point of this whole ugly mess
is for any of us.

How is it that the child that needs me most,
cannot live with me??
I want nothing more than to be Dean's caregiver.
Why is it that he cannot live with me and be happy?
I don't understand it.

I just don't.
I want that part of his brain to be healed so that we can
be together.
I am my best self when he is home.
I love this special young man with my whole heart.
I hate missing days with him.

I love cooking for him.
Cleaning him up for the day.
Putting conditioner in his hair.
Trimming his nails.
Teaching him how to cook eggs and toast
n' seeing his big smile lights up my life!

I would gladly do this for him every day for the rest of my life.

His days are not long. I know this. And I am mourning already.

I am in Gethsemane again
and my voice is raised to my Heavenly Father
and His Son--
heal my beloved son and me.