November 12, 2013

Auto-Pilot.

That's what I'm on these days.

My goal is to stay in the moment.

Not project to the darker days

that are surely ahead.

Wild thoughts tempt my emotions,

the pleading of my heart ringing in my ears:

"I'm not ready. Please. I'm not ready."

Quickly, I dismiss those thoughts--

banish them from my present. 

My presence.

I will live for today.

Work is good.

Staying busy is good for the soul.

I've cleaned out closets.

The fridge in the garage that has needed it

for so so so long.

I fight the urge to toss out everything that requires

more energy to hold onto,

to care for,

than I want to expend.

I fight the urge to want to control my world

in ways that are unhealthy.

Does anyone understand this?

A friend came by last night;

she said she "admires the way" I am handling my life.

Using words like "example" and "inspiration".

I told her I am completely clueless and totally winging this--

I can't see how I'd be an example to anyone.

There are scenes playing out in my head all day long--

from running far far away in any direction

as though I outrun the coming dread,

to curling up in a ball,

or wrapping my arms around my son so tight

that death cannot take him away

because of sheer willpower and mother-love.

Example?

of what?

a hot mess.

This place I'm in demands answers.

I feel them come in those fight-or-flight moments.

A calm warmth settles on my shoulders.

A blissful thought whispers and suddenly

I am me again.

I see things clearly

comforting

peacefully.

The world slows down.

I quiet my Self.

The wild fears that crowd my mind

leave without a fuss.

I mentally plan a funeral--

who will sing "I'll Walk With You"

and who will sing "I Know That My Redeemer Lives"...

Dean's favorite songs.

Who will tell Dean's story?

I have to get his Special Olympic medals out...

he has had some remarkable accomplishments in his life.

No college, no marriage or career...but still.

He's lived and been successful with what he came with!

I look over old photo albums and see his face with different eyes.

Does this even make sense?

How pre-mature are these feelings?

How ready do I need to be?

I feel guilty even having these thoughts.

I purposefully slow down.

I will not get out old photos again,

not while he's still here.

Will I regret that?

I will not think about a funeral for the next hour.

If I'm not, will someone else come help me when it's time?

I will think about spending time with Dean.

I will think about Thanksgiving and Christmas and Nana's homecoming.

Do I need to call a grief counsellor for me, for my children?

When do I do that? Is it too soon? I am grieving already, so maybe it's not too soon?

How are we going to get through this?

I pray for clarity.

I pray for peace.

I search my husband's eyes for answers--

he's lost both parents and a dear older brother.

He rarely speaks of how he dealt with those losses.

I need him to tell me how on earth I am going to do this

very hard thing.

But the words don't come.

I don't wanna know. really. I don't want to know. 

I know the "why" this is happening.

I understand that.

But. BUT.

Today, I will be grateful.

I will speak to my boy and listen to his voice and make plans to see him later.

And he will hold my nose and say, "I love you, Mom."

I will touch his nose with my finger, "I love you, Deano. Always."

We'll smile at each other with our knowing smiles and see into each other's eyes

the secret we both know...

that time is running out and the next chapter is a page away.

Dean, November 9th, 2013

It's November 9th, 2013.
IN Colorado Springs, it was unusually warm--
a light jacket or none at all was good in the afternoon sun.

We woke up this morning, grateful to be home
after a long night in the ER with Dean again.
We'd picked him up at 5:30-ish to go to dinner in town.
At first the plan was just to have him come over for dinner,
but because we live so far north of where he lives--
and that he was supposed to be staying in respite care this weekend
with a gal named Cecelia and her family,
I made a last minute decision to just pick up Joseph and Arianna
on my way home from work,
and head into town,
fetch Dean and eat wherever he chose.

He decided he wanted Del Taco.
I hate Del Taco.  (French fries with tacos?? ugh)
But. It was his night to chose so be it.
We ordered and took a seat.
Kent called just as our food arrived
and at first said he was too tired to meet us in town
so he'd just go home and scavenge up a meal there.
I understood his tiredness--
I've been tired for months now,
so I told him to do whatever he needed and we'd see him later.

Dean's HHP had texted me the day before to say that Dean
has been going to bed earlier and earlier recently.
Keeping that in mind,
I thought that once dinner was over,
we'd run him to C. so he could get into bed on his own time.
Well, I texted C. once we got our food
and she texted back to say that she and her family were at
a sit-down restaurant and it would be at least an hour
before they were ready for Dean.

OK, I thought, well, we'll eat and because it's Friday night,
it will probably take us at least a half hour or more to get to the east side of town.
"Things will work out."

Kent changed his mind shortly after the first phone call,
called back and said he was on his way to meet us.

#1 tender mercy.

Soon after Kent arrived,
Dean was finishing up his hamburger and turned to me,
looking very tired--
and said, "I'm ready to go."
Patting him on the shoulder I said,
"OK, buddy, as soon as we're finished eating, we'll leave."
He barely nodded his head,
then looking straight at me,
his eyes rolled back and he had a seizure,
slumping towards me.
I held onto him, got Kent's attention ( he was sitting on the other side and talking to the kids)
and he stood and helped me hold onto Dean so he wouldn't fall out of the chair.
He started to come around, but had another seizure and another and another....

I don't recall every detail after that--
I ran out of the restaurant to look at the street sign as I called 911--
the workers at the restaurant were of no help at all...
just a bunch of teenagers.

The dispatcher kept me on the phone--
helping me to describe what I was seeing with Dean
until the EMT's came.

I led them to Dean,
who was still passed out
and suddenly,
felt a tap on the shoulder--
I turned around to see a friend I know from church.
That was tender mercy #2--
Brenda wrapped her arms around me and I can't tell you what she said,
but I felt so loved and cared for in that moment.

Dean was loaded up in the ambulance
and headed to Memorial North for the second time in 3 weeks.
Kent took the kids home in his car
and I climbed into the Sub, alone,
following the ambulance.

I don't remember much of the drive.

I got to the waiting room, gave my name and Dean's name--
he was not yet in a room so I had to wait.
IN that time,
I texted Dara, whose in Seattle for the weekend
as part of her journey home from Alaska.
Told her to let the other kids know.
Then I texted my visiting teacher, Lynnel--
told her what was going on and asked for her prayers
and others' too.

It wasn't long before I was back in Treatment Room #6
with Dean--
they'd given him ADDAVAN for the seizures
so he was awake but drowsy and non-verbal.
I held his cold hand.
"I'm so sorry, buddy."

Kent arrived a few minutes after that.
The attending Dr let us know that there were blood tests being done
and such so it would be awhile.
I don't recall a single word between Kent and I.

Then suddenly,
Bishop appeared at the doorway.
Tender mercy #3.
I didn't expect him.
Hugs and tears all around.

He then told us that our beloved home teacher,
Patriarch Christianson and another brother from our ward, Brother Ellsworth
were in the waiting area, (tender mercy #4)
as they'd only allow one person at a time to come back.
I wanted Dean to have a priesthood blessing,
so I volunteered to leave the room so Kent and Bishop could
administer a blessing upon Dean.

Walking out to the waiting room,
I was so happy to see our sweet friend, Brother Christianson.
He is old enough to be my father. We love him.
He too, gave me a great hug and so did Brother Ellsworth.
They asked me about Dean and then asked me how I'm doing--
"I'm a hot mess." I replied.
Then they asked if I needed a blessing.
Yes. Yes I do.
Brother C. asked a nurse and soon we were given a small room to go into.

Now, I had no expectations of this blessing.
I just needed the peace that comes with such a gift.
But, in this instance,
28 years after the birth of my son, Dean,
I feel like the heavens were opened and I was gifted with the most precious knowledge
that could've been given to me.
I do not feel it proper to share this here at this time--
but suffice it to say,
I am Dean's Mom because my Heavenly Father loves me and trusts me to be--
a decision that was made long before this life.

The blessing did reveal that Dean's time here is limited.
I knew that. I've known that.
But to have it confirmed was also a gift.

I will leave the rest of the blessing private.

They finished, we all hugged and I returned to be at Dean's side.
 Bishop left moments after that too.

I'm gonna skip all the rest of the hospital stuff--
the docs basically increased Dean's seizure meds
and then sent us on our way.

We came home,
tucked Dean into bed,
then ourselves.
It was a long restless night for me
as I checked on him throughout the night.

This morning we made a nice breakfast
and spent the whole day with Dean.
He held my nose several times and told me
"I love you Mom."
Then he held Arianna's nose,
"I love you Bee."
And he held Joseph's nose,
" I love you, Joseph."
November 9th, 2013 was a good day.
We had to get some new meds for him,
then we went to lunch as a family, (Dean tipped the waiter $1)
then we walked around the little mall in town.
He picked out some new sneakers and a hoodie--(he paid $2 of his own money)
we went to the Dollar Store where he purchased a Christmas elf felt hat--(another $1)--
and we finally came home.
Dean likes paying for his own things. It makes him feel responsible and grown up.
I love that about him too.

We came home and decided we could all use a nap!

An hour later, we got up, had left over pizza
and soon after that, Dean said he was tired and going to bed.
It was just barely 6pm.

I tucked him in, turned off the light and shut the door.

If I have another November 9th with Dean,
I will be so dang happy! so blessed! so grateful!

I love him so much.
He is my boy.

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.

To Dean, With Love from Danielle

 Dean's birthday.  August was an emotional month for me.  Having seen the decline in Dean's health,
as I have shared previously, it is unclear how many more birthdays we'll have with our boy.

 There are fewer things that give Dean joy than balloons and clowns...

Dean's older sister knows this,

so she arranged for a clown to personally come to the house,

as a surprise for his birthday.

Her clown name is "STINKER BELLE"

and she is great!

She tuned right into Dean and as you can see,

he was delighted!

The balloon headpiece was an immediate hit!

Dean's language skills have declined,

so he was pretty quiet;

just lots of smiles.

And then Stinker Belle asked if she could give Dean a

paint tattoo of his favorite football team--

while she painted, she encouraged Dean to ask her

"clown questions"--

What do clowns eat?

Funny Bones.

Where do clowns sleep?

On a trapeze.

Bee got a turn too...

Joseph too.

 Along with being a sweet, gentle clown,

Stinker Belle is also a talented artist.

She even made Dean an honorary clown--

he couldn't have been more delighted

and immediately wanted to go to Walmart and buy some clown shoes.

What good is looking like a clown at home, right?

Gotta get out and meet the people!

So that's what we did...

I even posted our trip on facebook to let our friends know

that if they wanted to see Dean in action,

his debut performance was happening, STAT,

at our local Walmart!

We did see a few friends up there,

and Dean loved it when others noticed his happy face.

Small joys, this one. 

His simple happiness inspires me

to want less and to give more.

As Stinker Belle was leaving,

I gave her a hug and thanked her 

for being a blessing in our lives that day for Dean.

We both got a little choked up.

She replied that it was she who was blessed that day.

I had also invited my FB Friends to send Dean

a birthday card

and he was pretty happy to receive those--

it sure made him feel special.

SO thanks to all of you good-hearted friends for 

remembering him!

Danielle also made a beautiful video in honor of his birthday--

she said later that her first thought was to have it for a

certain day in the future,

but decided not to save it so Dean could enjoy it too;

he kept saying, 

"That's me. That's me."

Dean is our magical child...

his has cast a spell on us

so that we have never been the same.

Thank you Dani for loving so well.

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."

Celestial Child of Mine

Today is Dean's Birthday.
He's 24 today.
We won't see him today, but he'll spend the weekend with us and we'll celebrate then.
It's a time for reflection for me, when I think about this Celestial boy who holds my heart in the palm of his hand.
Raising a Celestial Child is not always a Celestial experience most days. It remains the single hardest thing my Heavenly Father has asked me to do on my Journey.
When Dean was born, I was 23 years old. He was my 3rd child in two years. I brought him home from the hospital on David Scott's 2nd birthday. We didn't realize Dean wasn't perfect for a couple more months. I was induced for his birth b/c I was supposedly overdue by the Doctor's records, but not by mine. Dean had a reaction to the pitocin--a known side affect--fetal asphyxiation. He didn't breathe for 10 minutes on his own at birth. IN fact, on his medical record is stated, "Stillborn but revived." So that lack of oxygen left him with cerebral palsy we would find out when he was 6 months old.
At first, I noticed he slept alot--but with two other children I counted that a blessing. I didn't know his brain had been traumatized and that was all he was capable of doing...sleeping. healing.
When I did take him to his well-baby appointments, the Dr. said because of the birth, Dean might be a little slower to develop and I should not compare him to the other children. Okay then.
By 4 months, Dean wasn't rolling over. He wasn't arching. Or grabbing. Or cooing. I made an appointment with a neurologist, Dr. Raun Melmud at Phoenix Children's Hospital. It took 6 weeks to get in. Once we were in tho, it only took Dr. Melmud 10 minutes to diagnose Dean.
Cerebral Palsy. I've shared before the immediate flood of emotions I felt and so I won't go into that again.
But Dean became the focus of my world. We were at Phoenix Children's Hospital and the St Joseph's Hospital 5 days in 7...his PT appt was 7am 3 days a week. I took the older kids with me to most appointments. The PT or OT would reward Dean and David Scott and Danielle with stickers for good behavior. I started putting those stickers in a journal for all of them...they got alot of stickers. Sometimes they wanted to wear the stickers on their clothes tho, so they did. Still, Dani & David Scott had to sit and be patient for hours and hours at the hospital...for 3 years.
On the flip side, I could take them anywhere in the Universe and receive compliments for how well-behaved they were.
When Dean finally started walking at nearly 5 years old, he was a sweet little angelic boy. Everywhere we went he drew people to his side with his bright blue eyes, blonde hair and huge smile. He was easier to take care of...no longer did we have to carry him everywhere or always have his stroller. He could walk with his walker and liked his independence.
As his hormones changed, so did he. He became unpredictable, impatient, demanding, violent, frustrated as often as he would be sweet, funny, cooperative and helpful. We just never knew from moment to moment what he would do.
We changed our behavior to prevent his outbursts. Sometimes it worked, and equally sometimes it didn't. He was sweet and attentive at school and church, but saved his temper for Home. He began having outbursts at school once in a blue moon and by the time he graduated HS, we knew something had to give. He was frankly, driving me crazy. I couldn't do enough to keep him busy and occupied--somedays it was more than frustrating. I didn't know what else to do. After a series of very violent outburst at home, one scared me, I PRAYED my guts out for help!
With what I believe was Divine Intervention, we found a program for Dean and he qualified to go to the TOP of the list...the waiting list that was 15 years long. I am not kidding. He went right straight to the Top. It was a host-home placement. We tried different homes before finding the right one...and we had to move to Fort Collins to find that one. He was there for 4 years until his care began to decline, and after a few more moves (which I shared here last year), he is in a host-home that is perfect for him.  We love his caregiver and feel his quality of life is as good as it could be.

At first, my mother heart was in agony over his absence. I could feel my heart aching. Tears. Lots and lots of tears. Why did Heavenly Father ask me to give 110% of my heart to this child and then not provide a way where I could take care of him for the rest of my life?--I wondered over and over. I cried everytime we took Dean home to his caregivers, so that I stopped being the one to take him home after a weekend visit with us. Or a week night dinner. Or after Church. I just couldn't leave him without an overwhelming flood of tears. So Mr W., or Dani took him home.
It's not as bad anymore. I can go, give him a hug goodbye and smile until I get back to the car. Then, I just "suck it up" and drive away. Leaving part of my Self there with him. I tell myself that it won't always be like this...that someday, when the other kids are grown, Dean can come home with me. That's what I want at least. Dean and I have a great time together when he's having a good day.
For now, my blessing is to be the mother to the rest of the crew they need me to be. I didn't realize how much the others had to sacrifice when Dean was at home. They sacrificed and had to make do with whatever was leftover of me after caring for Dean. A Special Needs child comes to a Family. And the entire Family is affected by that one child. From an eternal perspective, we are all in this experience together. We nicknamed Dean our "Golden Ticket" to the Celestial Kingdom...we've all said that how we treat Dean will determine our place in heaven. We take comfort in the knowledge that someday, we will know Dean as a perfected young man, without his limitations, and that will certainly be a Great day for all of us to gather 'round him and hear him express himself without using sign language or a speech impediment...and I imagine words will not be needed. What I didn't realize at the time was that while I was willing to live my whole life for Dean, Heavenly Father doesn't want me to. He isn't asking me to do that. I am the Mother to 7...and I am allowed to be the joyful mother to them all. That to me, is a grand gift indeed.
I love being Dean's mother and am entirely grateful he is still here with us. I love him so.

A Teacher's Grace

Over this past crazy weekend of moving,
we also had a visit from my special needs son, Dean.

We had planned on having him here months ago,
long before we knew it was going to be a crazy weekend.
We didn't dare cancel,
because, seriously, I sleep better when he's
within arm's reach.
I just do.
All is right in my world,
when Dean is visiting.

And he loves to be needed,
loves to help,
loves to be where the action is--
so this was a perfect weekend to have him visit us
when you know this about Dean.

We worked hard all day long on Saturday.
All. Day.
Packing and moving
packing and moving.
And he never once complained.
I wish I could say the same for the rest of us.
We're so much a bunch o' whiners.
I get so cranky that I consider calling
ARC to come n' get whatever they can fit into their truck
n' call it a day
cuz we own more stuff than is legal in some countries.
And the little yahoos whine so much
that to get them to help is akin
to bowling with broken fingers.

Anywho, we worked hard all day Saturday,
and come Sunday morning,
well, we didn't go to church.
Two reasons really:
Dean didn't bring his Sunday clothes,
and I couldn't find the box with my underwear in it.
I'm not kidding. And that's all I'm gonna say about that.

ANYWAY,
Sunday morning, I was looking at our family picture
where all of us are smiling and looking all radiant
after being sealed as an eternal family
in the Salt Lake temple right at 7 years ago,
I got all choked up n' stuff
like I do.
Dean came over to me and gave me a big hug.
I mean, a really big hug
where he didn't let go immediately,
because normally he's a hard one to get a good hug from
as it just stimulates him too much to bear.
But not this time,
he hugged me good and tight.
When we both let go a little,
I held his hands and said,
"I want you to know that I know you have been sent here
to teach me.  Thank you for being so patient with me.  I love you so much."
And then I wrapped my arms around him again.

Then, I pulled away to wipe the tears from my eyes,
and he started to walk away towards to back door,
when he did something unusual--
he turned back to me,
smiled
and slowly
took a bow.
The whole arms stretched open,
head down,
bending at the waist
like a
"it's-my-honor-to-teach-you"
bow.
It will ever remain the most gracious bow
I have ever seen.

And made my crazy weekend
awhole lot sweeter.

I love him.

It's Hard to Smile with Clenched Teeth

Mother's Day weekend was awesome.
AWESOME!
We took a little road trip to visit Dean
in northern Colorado.

I wish so much I'd had my camera in my hand
when his caregiver led us to him--
he was out in the pasture petting their horse
all by himself.
When he turned and saw us,
his face, indeed his whole countenance was so calm and happy.
I haven't seen him look that way in a very long time.
He hurried over to us all smiles and gave us all big hugs.
Then, very purposefully, he said,
"I'm staying here."
I understood exactly what he meant.
"Yes, you are."

He took all the kids on a tour of the grounds--
introducing them to "Lucky" the horse,
the pigs, the chickens,
the dog,
and back around a couple more times.

We just all hung out with his caregiving family,
and it felt so relaxed and genuine.
We asked if they'd be our caregivers too.

We took Dean into Fort Collins to his fav restaurant--
Red Robinnnnnn....YUMMMMMMMM.
And over to a park to hang out for a little bit.
Fort Collins has a lovely Spring--
they're lower in elevation than Colorado Springs,
so all of their trees are blooming and the grass is already green
everywhere you look.
Mr W and I talked about moving back up there someday
once the yahoos are out of school.
We prefer the school system here which is the major reason
we moved back down here
when we left Idaho.
Anyway, our Saturday afternoon with Dean was perfect.
I love that boy.

Clenched teeth.
Well, before we left to see Dean Saturday morning,
we went to check out a house in our area.
It's a house I've had my eye on since last Fall,
but it was outta our price range.
Then, there was a contract on it,
so I just forgot about it.
mostly.
Well, on Friday night, it popped back up on the MLS
and I emailed my realtor to get the details.
Not only was it back on the market,
but
it's priced 30k less than before!
She set up a showing for us Saturday morning.
We took the yahoos with us b/c we're on our way outta town
anyway, and they went nuts.
Loved the house.
It is pretty darn cute.
We talked about it,
then last night, Mr W and I prayed about it,
and have gone forward and put an offer on it.
That's why my stomach is trembly,
I can't sleep (it's a little before 4am)
and my teeth are clenched.

I hate buying a home.
It has got to be one of the most miserable experiences in life.
I'd rather have a root canal.
I'd rather have three root canals.

I'm self-talking/coaching all day long inside my head:
"it'll be okay."
"if it's meant to be, it'll work out."
"be patient in the process."
and on and on.
I get sick of listening to my self so much,
that I talk back--
"What if it's not okay?"
"Are you doing everything you can?"
"I feel sick to my stomach."
"The MONEY!"

Ugh. I'm pathetic.

I'm focused on other things--
in fact,
you could say I have many irons in the fire...
the yahoos are at the end of the school year--
which means concerts,
dance performances,
recitals,
plays,
ceremonies,
finals, etc.
We're talking about summer plans
with the house;
with family;
Dani and Mr. Idaho's summer internship in Houston
and their baby boy that'll be born there;
and
I'm pitching my home staging business to
an entire Keller Williams real estate team
this morning,
in exactly 5 and a half hours.
Power-point presentation even.
Daisie helped me make it, of course.
She likes it when she knows how to do something that I don't.
Whipper-snappers these days.
I need to go back to sleep,
but I can't for all the noise in between my ears!

I hope the presentation goes well.
Mainly, I hope I can smile with clenched teeth
and don't pass out or puke in a room full of strangers.
Cuz, ya know, noone wants to see that.

Cross your fingers and toes for me, please.

Snow Day, Kohls Addiction, Dean's Move, And Getting Along

Another Snow Day.
The yahoos' emotions vacillate between
relief and anxiety
because there are two built-in snow days
on the school calendar left,
and once those have been used up,
anymore snow days will have to be made-up
by adding school days to the calendar.


So while they're wrapped like burritos on the sofa,
watching the Disney Channel and Nickelodeon this morning
in their pj's,
all warm and lazy-like--
they don't wanna push their luck
and run outta snow days.


Because by the end of the school year,
it's near torture to have to go to school
when these Rocky Mountains finally thaw out
n' the warm sunshine is wasted by sitting inside.


***


Yesterday, I was off work so I did whatever I wanted...
kinda.
As a Momza, I never really do whatever I want,
being that I am a responsible parent and all that.
But
I did go and do
whatever I wanted within the "Mom Realm".
Went to one of my favorite places, Kohls.
They hold me hostage, it's true--
they're the only store that carries the line of dishes that I love so--
my Woodland Reds with the bears, canoes and pine trees

That's them right there.
Have you seen them at Kohl's?
I started with just the plates back in 2007--
when they were on clearance for .99 cents a piece.
I know, right?
But they're not on Clearance
in Colorado--
because we Coloradoans are all about the outdoors!
So I can only get them when they're On Sale--
which is why,
everytime I go to Kohl's
there is a cosmic force that pulls me to the housewares department,
specifically down the Woodland's row
where I must see for myself if there are new additions
to the collection
and if they're On Sale.
Confession here:
It was all I could do to walk away from the Woodland's Dining Utensils.
Yes, they even make silverware to go with--
but I had just bought some nice stuff last Fall,
and common sense told me not to buy it.
Even at 50% Off.
Common sense can be a thorn in the side sometimes,
yeah?
'Cause I so wish I'd gotten them--
nevermind that there's no common sense involved in that "wish".


So now you know why I am addicted to Kohl's.
At least partially.
Maybe they pump oxygen into the store
like Las Vegas does to their casinos?
I dunno.
****
Last night, at 8:22pm,
the phone rang and it was the best part of my whole day.
Dean's new caregiver, M. called to tell me that the move went very well
and Dean was a happy camper
in his new digs.
Seriously, I love this woman!
No other HHP has EVER called to say how Dean was doing
his first day, or second or any day after that.
It was a total act of compassion for M. to make the effort
for me.
It was a short call,
but oh my, it was a huge gift!
When I hung up,
my heart leaked out my eyeballs
pushed out by relief and gratitude.
No matter what else is going on,
in the back of my mind
is ALWAYS the concern for my special-needs Son.
And especially yesterday,
as I knew it was "Moving Day" for him.
With the weight of that concern removed,
I was able to exhale my worry away into a breath
of gratitude.
***


Yesterday at lunch,
Nana and I were talking about our family
and others that we know.
The topic of "happiness" came up alongside
"trials".
Nana observed,
"I think most people I know are just trying to get by, Mom."
We talked about that for a few minutes
just letting it soak in and appreciate it for what it is, ya know?


One of my most favorite American figures is Will Rogers--
he was just plain good.
One of my favorite quotes of his is:


“I never yet met a man that I dident like. When you meet people, no matter what opinion you might have formed about them beforehand, why, after you meet them and see their angle and their personality, why, you can see a lot of good in all of them."


Olive Garden bread sticks really bring out the philosopher in me.
Must be the seasoning, 
which I am fairly certain is made up of some addictive chemical 
that makes me crave it fortnightly.


Anyway,
I think Nana's right.
Most people I know are just trying to get along.


Last week was a rough one for me--
in particular, there was a day
a day
that I needed to pat myself on the back.
SO 
I took a pencil and paper
and wrote down
all I had accomplished that day,
in 5 minutes.
I had done alot
and I felt better just looking at it all
in black and white.


I don't know what made me think of that,
but it made a difference.
***


Okay, so I'm off to work.
Make it a good day!

Why Me? What Have I Done to Deserve This?

I went up to Loveland today.
Well, actually, I went further north to Wellington
because that's where a Prospective Host-Home Provider lives.
I'd gotten a call last week,
from Dean's case worker that there was a PHHP
who has offered to have Dean as a client.

After the two PHHP interviews this last week,
I just wasn't feeling super confident that we'd found
the right home for him,
but still,
because they're both in the Springs,
I fostered the belief that when it came time to make a decision,
I'd feel it in my heart and mind
that we'd know which to choose.

With the third offer,
I have a new choice in the mix.

First, the good things about the PHHP--
Dean knows their family already,
as two members of the family work at his day program.
He's stayed in their home before.
They're experienced--they've been doing this for 6 years.
They live out in the country
with chickens,
and a horse,
a pool and a hot tub,
they're an active family too--
and they're willing to make seeing Dean easier on us--
offering to meet us halfway between
their home and ours
and even driving Dean to see us.

We have never had that.
We've always been the ones to go and get him--
and so that right there,
makes the extra distance bearable.

The Mom is caring and responsible.
Her home was tidy and lovely.
She radiates goodness.
And she wants to provide a stable environment for my son.

Dean wouldn't have to alter any of his day programs--
his life would have little change.
But
he'll be further away from us.
And that makes me sad.

On the other hand,
we're to meet the other PHHP's down here tomorrow.
And the pros and cons of these two are the same:

The good thing:
they're here in the Springs.
Which means we'd get to see Dean more often.
Weekly.
The gamble is this:
they've never been HHPs before.
It's not even a "known" if they're going to like it.
One couple has never had children of their own yet.

The other is a smidge older than me,
have raised a housefull of kids,
are now empty-nesters,
altho the Mom of the household works
at another job,
so Dean's primary caregiver would be the Dad.

And I just don't know if he's realistically up for this.

But they've both prepared to take clients
and have said they'd love to host Dean.

But it's kinda like trying on shoes,
to some people,
as to whether or not they're going to like
being a HHP.

That's a gamble for us.
And I am so so not a gambler with Dean.

But I still feel calm that when a choice is made this week,
we'll make the best one for Dean and with Dean.
This time,
I'm going to give Dean a chance to choose for himself.
If you are inclined to pray,
I would surely appreciate your efforts in our behalf.
Thank you.

And here's a rambled thought I had on the way to Loveland today--
I think only my family would appreciate this,
but here goes:

When Dean was born,
I went to alot of Doctors with him
over the years.
At almost every initial consultation,
the question was asked:
"Was this a normal pregnancy?"
It was a normal pregnancy,
it felt normal, however stressed I was,
with two young children already,
a husband in school full-time and working,
and living far away from any family.
Still, I didn't have any pregnancy-related problems.

The only thing that was different in that pregnancy
was my indulgence for a Snickers bar
almost every day.

Snickers bars.
That was the only thing different
that I could think of.

When Dean was first diagnosed with cerebral palsy,
I begged with all the energy of my soul
for the tests to be wrong,
for a miraculous healing,
for my son to be made whole,
for forgiveness of whatever it was that
I had done
to have deserved such a tragedy.
My heart so heavy, I couldn't breathe,
my eyes welled over with tears,
I asked:
"Why  Lord? What have I done to deserve this journey?"

And for a long long time,
I felt like my son's handicap was a punishment
and in some very weird, immature way,
I blamed my selfish indulgence of Snickers
for his disabilities,
so willing was I to take responsibility.
However ludicrous it was,
I blamed myself.

That was a hard burden to bear
in my heart.
And it was unnecessary.
Eventually, I realized I had done nothing
wrong.

Dean's life is a gift to me.
He has taught me more about my self
and my Heavenly Father
and what is really important in this Life
than anything else could have in Dean's place.

I am honored to be his mother.
I am grateful to have received the blessing of raising
a special needs child.
My awareness and perspective of all phases of life
is deeper and has greater clarity
because of this journey with Dean.
He is my child-like teacher and his patience with me
is profound.
The question is the same these days as in the beginning:
"Lord, why me? What have I done to deserve this journey?"--
but it's from a totally different point in the path--
it's 25 years down the line
and my eyes, though full of tears,
are tears of gratitude.
Why me, Lord? What did I do to deserve so much love?
Thank you.
Thank you.
Thank you.
Sometimes, when we don't understand our trials as gifts,
we try to make sense of them
in our own limited and very mortal way.
As we come to understand our Heavenly Father's love for us,
we know that the blessing of the Atonement of Christ,
wasn't just for our sins, but for our sorrows and trials too.
That understanding alone is a blessing.