What I Can't Talk About

a lump in my throat.

a shooting pain in my heart.

I feel the immediate squeeze in my jaw.

and the tears are right there,

just behind my eyes.

I bite the inside of my cheek to hold on

and then,

I have to change the subject

to you, to yours, to the weather,

to anything other than

my son.

Just sitting here in the quiet of morning,

alone with my thoughts,

I wonder if I can

if I dare

let this out.

I've guarded this with all that I can--

when asked about my son,

I hold back and say,
"I can't talk about it."

Because, if I even start to go "there"I know I will lose it,
and the person on the other end is going to be left standing there
feeling helpless to say whatever they can think of to comfort
a mother's heart that is torn and bereaved to the point
that there are no words that can give comfort.

And that would be a burden I don't want to place on any unsuspecting person.

I hold these feelings as sacred to me.

And while I know there are others who carry similar burdens--
I suspect there are others, anyway--
there isn't anyone in my circle of family or friends
who truly truly know how I feel.

It began last December when Dean had a seizure that took him to the ER.
He was in the hospital for 5 days...
MRI, CATscan, blood tests, spinal tap--
where was found a lesion on his brain.
The neurologist said if we'd noticed aggressive behavior increasing in Dean--
that was a 'yes'--
then he said it's because the lesion on Dean's brain was exactly on the part of the brain
that controlled aggression.

To counteract the seizures,
a drug called "Keppra" was prescribed
and a follow-up appointment was to be made
by the host home provider and agency that oversees Dean's needs.

That was December.
I asked about that appointment over and over and over and over and over and over and over--
given excuse after excuse after excuse after excuse
as to why it hadn't been made.

I was trying to be patient,
but in the meantime,
we couldn't have time with Dean because he'd lost control
while he was around us,
and it was too hard to do that.

He calls me everyday
and asks to come over.
He misses us.
And I was told to keep away from my son
because he is worse after seeing us--
with the promise that once his meds kicked in,
he'd be better.

In May,
while I was at Women's Conference--
the first day I was there in fact,
I got an awful phone call that said Dean had been removed
from his host home because of serious bad behavior--
the police had been called,
Dean had been handcuffed.
handcuffed.
My special needs son, who has the cognitive ability of a 3-8 year old,
handcuffed.

I was sick.
I sucked it up and tucked it inside,
deep inside my heart,
and went through the rest of the trip
half there.

I came home and had an emergency meeting with Dean's team.
He was there too,
but as soon as he saw me,
took a swing at me and had to be removed.
My heart broke for him.

This isn't my son.

I demanded help--
when is the neuro appointment?
You know, the one from December??

Turns out, the agency lost the referral months before
and no appointment had been made.

WHAT??

I went home and made phone calls.
To the State agency--
I needed help for Dean.
It was at the end of the day-- 4:57pm--
with a prayer in my heart that someone
ANYONE would answer the phone,
I was relieved that the actual Director took the call--
when he said later,
that he never answers the phone so close to the end of the day.

I could barely get out my name,
before the flood gates opened
and I sobbed to this stranger on the other end,
telling him what was going on with my son,
and asked for any kind of help.

He gave me names and numbers,
and support that I have been needing for months.
He gave me his personal cell phone and email
and told me to call him anytime at all.

I hung up, relieved, with a plan.
I was going to take control and demand accountability!
I contacted ARC and got an Adult Advocate assigned to Dean
to protect him and his rights.

There were more emails to lots of people--
each seeing that I copied the Director on them
as he told me to do.

Things with Dean got worse before they got better.
He ended up in the ER again,
in the psych unit--
escorted by police--
only to be held there for a few hours and released
with no treatment plan.
I sat in the waiting room--
unable to go to him because someone identified me as a
"trigger".
I cried when I had to leave the hospital
and he had no idea I was even there.

"It's the DRUGS! This is not my son!", I kept saying.

He was moved more than six times between May and July.
Six nights I didn't sleep.
Six nights and more mornings, I went to bed with tears and woke up the same.
Kent gave me a preisthood blessing, wherein I was told
that I have much work to do for Dean and
I will be given the strength to do it.

I fasted for him.
I fasted that he would get in to see the Neurologist.
A new nurse was assigned to Dean at the agency, Shannon.
She came in to get things done.

Finally, though, he got in.
Turns out, the Keppra has known side effects that induce aggression and violence.
Seriously.

Dean had another MRI scheduled.
He would need to be sedated for it.
The morning of, the nurses didn't put it in his chart (or whoever was supposed to, didn't)
so that appointment was cancelled AFTER he got there.

Another appointment was made weeks out from that one.
Shannon was on top of it.

Finally,
the MRI was done and we had to wait two weeks to get the results:
which were
that the lesion on Dean's brain had hemorraged to the point that
there is no brain matter left in that part of the right frontal lobe.
Which means he will continue to deteriorate in his abilities
to remember things, names, people.
Me.
That his language skills, already difficult to understand, will decline.
As well as his ability to understand language.
And his posture is affected.

I can't even talk about this.
I am looking at these words,
and I can't even say them outloud.

I have seen Dean since they took him off Keppra.
In fact, I saw him last Tuesday.
He looks homeless.
I don't know why his respite care provider doesn't make sure
his teeth are brushed,
his beard is trimmed,
he's wearing clothing that fit him...
I've complained.
I said it isn't OK with me that Dean looks unkept.
But his new HHP is committed to changing that,
and I am hopeful that he keeps his word.
Anyway, I got to look into my son's blue eyes.
He was sweet and hugged me and stood close by me
as we talked about him going to a special needs camp
in the mountains last week,
put on by the Lions Club.
His speech is slurred, his posture is weak,
he couldn't remember the kids' names--
Joseph and Bee were with me--
it is evident he is struggling.
But his smile was there.

He went and had a great time.
The Leader of the camp wrote me email and sent pictures
of Dean while he was there and said he did great.

I interviewed a new host home provider, Eric.
I met with the team again,
and requested a new case manager as the other one
clearly didn't care about Dean--he was better at excuses than action.
I was applauded by other team players afterward for that decision.
The new case manager is awesome.
I love her. I need her. Dean needs her and she is on top of everything!
At the meeting where Eric was present,
I told him and the rest of Dean's team that once Dean's meds have been
evaluated and changed and he's doing better,
I want him home.

He belongs to me.
I belong to him.
Just as I belong to my other children,
but even more so.
And if you have a special needs child,
you know what I mean by that.
Having a special needs child,
makes me a special needs mother.
I have needs regarding his care that exceed my abilities
at times.

I believe,
I have been blessed by God in heaven
to see Dean's last moments on this earth
and I am at his side in those moments.

His days are known.

"Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever."

I can't talk about this.
I say that to my family, to my friends, to anyone who asks.
I can't.
It is too real. Too hard. Too much to put at anyone else's feet.
Too much.
I don't think anyone really wants to hear it all.
And I certainly can't talk about it without my heart leaking through my eyes.


When I close my eyes at night,
my heart opens and reaches toward the heavens,
and my silent prayer is the same,
"Please watch over my Dean. Help me, Lord, to be strong."