How Great Thou Art

 

Yesterday I had to drive to a specialty store to get some fabric for a bride.

The store is across the valley, and is near Bradley's lung doctor.

As I exited the freeway, tears came to my eyes, as did many memories to my mind.

All the appointments last summer trying to figure out why he was requiring oxygen.

Him nearly coding in the office twice.

 

 

 

And after we passed the pulmonologists office we passed Nevada Early Intervention.

Memories of my first and last time being there last summer.

The hours of evaluations.

The questions.
 

Does he reach for objects?

Does he sit up unassisted?

Does he laugh?

Does he cry?

Can you feed him by mouth?

 

And most of my answers were, "No." and "He used to."

 

And then their reply was,

"You need to keep trying! Don't give up!"

 

And I wanted to scream,

"I WILL NEVER GIVE UP ON MY BRADLEY!! 

 HE IS DYING IN MY ARMS!!

 HE IS NOT GETTING BETTER!

HE'S GETTING WORSE!"

 

And because he was undiagnosed, no one ever knew what to expect.

I was told over and over again that anything could happen.

There was no limit on what he "might" do.

But no one wanted to acknowledge that he "might" die too.

 

Those appointments were so painful for me.

 

 

Bradley's death certificate says cause of death is

chronic respiratory failure,

due to loss of developmental milestones,

due to undiagnosed genetic condition.

 

I still don't really understand how it happened or how we knew.

But his spirit left his body that night,
and all I could think about was how the doctors were right.

How I was right too.

How they had confirmed my instincts.

 

His death was very long and drawn out.

Almost a year of watching his brain die.

And now I really am feeling relief as I'm sure he is too.

 

I imagine he is doing all kinds of wonderful things now!

And I know he is painting in Heaven.
I've seen several of his masterpieces since he's been gone.

He was such a creative force in my life.

I'm certain he's an artist in Heaven.
An inspiration who could never use his legs.
I know he's finally standing at his easel creating masterpieces.
 

I feel like Heavenly Father did have mercy on us by taking Bradley when he did.
The suffering has ended for all of us.
And I love when he sends me his art.
He was always trying to teach me to look up.
And he still is.
 



Forever Changed

 

 Today marks six full weeks since Bradley returned to Heaven.

 

The baby wipes he was using are drying out.

And the grass is coming back on the top of his grave.

 

 

We also learned this week that Bradley's Medicaid

was canceled because he had exceeded care costs.

The letter stated that we can appeal the cancelation.

I guess I need to call them and let them know he is gone.

 

The trial we had with him was not financial.

He was always provided for, while he was here.

I'm grateful Heavenly Father took care of that.

Through our efforts and efforts we could not see,

Bradley was always taken care of finacially.

 

 

 

One of Bradley's therapists was at the funeral.

I caught her outside the relief society room after she had seen his body in the viewing.

It's the only time I've ever seen her with tears in her eyes.

She never cried in front of me while Bradley was under her care.

She was strong. Brave. Hopeful.

And we hugged and she told me she was sorry as she quickly wiped the tears away.

I told her I still was not giving up on Bradley.

That I knew I would see him walk someday.

She smiled and she said she knew that was true.

 

 

 

 

 Last night, as I was falling asleep, Tom was watching a show about a murdered boy.
And they interviewed the Mother and asked her about her son and what she felt with his loss.
 I was prepared to hear how angry she was.
But instead she had incredible faith.

She said she imagined he was in a meadow somewhere soaking up the sun.
Enjoying his time.
Free from the pain of his death.
Free from this world.

And they asked her how she was feeling having lost a son
and she said she has been forever changed.

I know exactly how she feels.
And I'm grateful that my son was not taken from me by a vicious murder.
I'm grateful it was not a sudden accident that ended his life.
 I had time to prepare.
I had picked where I wanted his body to go.
 I had talked about eternal life and the resurrection with his siblings.
And when he passed, I was able to let him go.

I think this trial has been a very good one for me, personally.
Forever changed because I know there is a God in heaven.
He has provided, so much, even in my loss.
I cannot deny that he has been here carrying me through the storm.
I have been forever changed too ♥

Returned With Honor

 Today we were with Charlotte's cousins.

My nephews.
They are that adorable kind of boys.
They remind me of my boys.

Big beautiful eyes.
Unbelievable eyelashes.

 

And as we were leaving a store, a friend I've not seen in a long time, greeted me.

She looked down at Charlotte, then next to her, my nephew.

This nephew is only older than Bradley by 4 months.

He does everything Bradley never did.

He talks. He walks. He's curious. He giggles. He runs.

Her eyes got very big and she said pointing at my nephew, "He's doing SO good!"

 

She thought it was Bradley.

And I told her he was my nephew with a chuckle.

And her heart sank as she said, "Where is Bradley?"

 

I hugged her and I told her Bradley was in Heaven.

She got tears in her eyes.

I guess she hadn't heard.

I thought everyone had. 

 

 

She got more tears in her eyes as she told me,

she knew we were the perfect family for Bradley to have come to.

I told her I was grateful I knew he was in Heaven with Jesus.

 

I told her about the respiratory failure.

I told her where we buried his body.

And I told her he had served his two year mission and had returned with honor.

 

 

 

I am so proud of him for so many reasons.

 

He never walked, talked, giggled, asked questions, or ran around a store.

But he effected people.

Everyone remembers him.

He was quiet but unique.

And he has left ripples.

All across a pool of people.

 

Tom said tonight at dinner,

 after I recounted the story,

that he is sure Bradley was and is a somebody in Heaven.

A very righteous disciple of Christ.

That he was not a fence sitter.

That he knew who he served

when he took the body he was given.

 

And his salvation was guaranteed through his sacrifice.

It's a lesson I've learned over and over.

"Sacrifice brings forth the blessings of Heaven";

especially for Bradley!

 

 



The Crown and The Conflict

There is a headstone by Bradley's grave that says,

"The Crown Without the Conflict."

The baby beneath the headstone, lived for one day.

I know that baby will wear a crown. 

 

But every time I see it, I think about how much conflict Bradley had.

How Bradley earned every bit of the crown that he will wear.

He suffered so much!

I am grateful I had him for more then one day.

I'm grateful his spirit filled our home.

I'm grateful he submitted his spirit to that broken body,

so that I could hold him in my arms.

 

 

I know with every particle of my body, that Bradley will wear a crown someday.

I know that he will be radiant when I see him again.

 

 

 

Right before we closed the casket,

I thought about pulling his body out and running away.

I wanted to hold him one more time.

But I touched his chest, and bent down to kiss him,

and I felt how cold he was, and I knew that it was only his body that was left.

 

This is the hard part.

The sad and treacherous, longing for him.

 

 

 

 

And tonight I realized there has to be a crown for me too.

I am enduring a conflict now.

All this time, I've been thinking about Bradley being saved.

But I think the lord will have mercy on me too.

This suffering.

This separation.

If I'm worthy, I will wear a crown someday.

He knows my sacrifice so personally.

There will be a crown for my conflict!!

I'm grateful that I learned that today.

Rock, Paper, Scissors

 

 The other night I was crying about missing Bradley.

How empty my arms are feeling.

How empty the pictures I'm taking are.

How empty our moments and memories are feeling.

 

And Jacob came and got in bed with me and asked if I was missing Bradley.

I told him, I was, as I wiped my tears on his shirt.

And Jacob said he was too.

He said he wished he could play Rock, Paper, Scissors with Bradley again.

I started laughing and told him I didn't know they had played that game together.

And Jacob explained that Bradley was always paper.

And if Jacob wanted to beat Bradley, he would be scissors.

And if Jacob wanted Bradley to win, he would be rock.

 

 

We are redecorating the house.

Trying to make the house peaceful.

Also doing jobs we have neglected for two years because of our stress and grief.

And the toys have been out of control and needing to go somewhere.

My children are out growing them too.

I had to move the girls back into the big bedroom, in order to move the toys into Jacob's room.

Bradley and Jacob went into the big bedroom when Bradley got the nurse.

Made sense that Bradley get the big room,

 since he had more medical equipment then the girls.

 

 

And as they have come to pick up the medical equipment,

I have realized the only personal possessions Bradley had were his clothes.

It's hard to even have toys when you are blind.

At one point Bradley had tons of toys for therapy,

but most had been taken by Charlotte and used for her dolls.
And Bradley did not mind.
 

Tonight I cleaned out the dresser we were using for him.

His life had been so hectic.

So progressively, regressive.

Everything, I saved to be done after he got here, never happened.

He never even had a dresser.

He was using an old buffet that was perfect for his medical supplies along with his clothes.

So he never got a chest of drawers like the other kids.
And Bradley did not complain.

 

Tonight I unloaded the buffet that wasn't his;

that he only used because of the medical supplies.

And I took the last things out of the drawers, which were his clothes.

His beautiful clothes that smell like him.

The t-shirts with funny words.

The clothes he wore in every picture I have of him.

The clothes which hold so many memories.

 

And I loaded them into a storage box with a tight fitting lid.

I'm hoping the tightness of the lid helps them to never lose their scent.

And when I was looking for the perfect box in the closet,

I came across hand-me-downs from Jacob,

 that Bradley was supposed to fit into someday.

 

Which is harder?

The clothes he actually wore?

Or the clothes I hoped he would one day wear?

 

I've lost a child.

I've lost a friend.

I've lost a purpose.

 

But it's a strange loss.

The regression was so cruel the last year,

I was not planning much for his future.

Planning for his future would nearly paralyzed me.

And now I'm just empty.

 I'm lacking.

But I've been lacking a while.

He was gone a long time ago, in so many ways.

 

I wish I could go back to this time,
before the 20+ seizure days.

 

 

Pray that I can have a dream about him soon.

One where I can see him crawl or walk or smile.

I miss my baby.

But I've been missing him for longer then 3.5 weeks.

It's been slow, progressive regression.

I'm crying tonight for everything lost.

Everything.

 

Mending A Smashed Toe and A Broken Heart

 

Whenever anyone is sick or hurt it takes me back
to that place that only Bradley has taken me.

Fear for life.

Precious breath which is given by God.

 Breath that can be taken from us at anytime.

Because he is in control and we are not.

I think this is a lesson I am going to revisit many times in my life.

 

 

We have received so many condolence cards and letters.

I've been surprised how many have come from doctors and therapists.

They really did and do care.

I just hated everything about the medical side of his life.

It's very hard for me to accept medical care, I guess.

I don't gravitate naturally to it.

I guess that is why I'm more comfortable birthing my babies at the foot of my bed.

But I've always fought against my natural preference, if I knew it would help my children.

 

 

 

Charlotte smashed her toe this week.
She squished it when a heavy barstool fell on our stone floor.

The impact popped a hole in the end of her toe,
spewing cartilage onto the stone.

It turned black instantly.

I started balling when I saw it.

I couldn't handle another one of my babies suffering.

I held her and rocked back and forth.

Crying and aching for both Charlotte and Bradley.

Then I realized she should probably go into the ER.

See if it needed stiches or had a broken bone or something.

We went to St. Rose,
 because Sunrise is the best,
but I couldn't bear the thought of going there.

 

They took an x-ray that was normal.

They gave us a Band-Aid and Neosporin.

And sent us home.

Told us to come back if it looked infected or if she ran a fever.

 

 



Ironically, she did get a fever the very next day.

And by 5pm she was throwing up.

I knew I had to take her to the best hospital if she had a possible infection.

So Tom and I and all the kids headed down to Sunrise.

The ride was so nostalgic and heartbreaking.

A weird mix of sad memories about my Bradley.

Memories of fear mixed with everything we have been through together.

 

We walked into the familiar waiting room

and every single nurse who has ever helped Bradley was working in triage that night.

We filled out paperwork for Charlotte and because she had a

fever associated with a wound they let her back very quickly.

When we got into triage they looked at all of my kids and said with curiosity in their eyes,

"Are these all the kids you have?'

 

I burst into tears and told them I was Bradley Brinkerhoff's mommy,

and that he had passed 2 weeks ago.

That he had been referred to hospice care by Dr. Nakamaura, 9 months ago.

And he had died of respiratory failure, like every doctor had said he would.

 

All of the nurses got very sad looks in their eyes and told me they were sorry.

It was obvious they didn't want me to cry.

They took us back to a familiar room.

They repeated the x-ray which was normal, again.

They said the site didn't look infected.

They said that it was too soon for that degree of infection to have developed.

They said it was probably a coincidence she had a fever and was throwing up.

 

And they let us go home.

And I was relieved nothing was wrong

 and they didn't have to poke another one of my babies.

 

 

When I got home I realized Heavenly Father

had given me the opportunity to find closure with that part of Bradley's life. 

He let me tell the nurses who had helped us so much in the Sunrise ER.

I had wondered, when we went on hospice 9 months ago,

if they would even notice when we stopped coming in. 

While it was painful to tell them, I'm glad they remembered him.

That they remembered him on their own and asked me.

It made me feel like he really

did effect hearts of the people in the hospital.

 

Grateful for that opportunity to tell them myself of his passing.

Grateful Charlotte is okay too.

I feel very taken care of.

 



The Butterfly

Tender feelings today, as I walk around my house and think about my son.

He was my everything for the past two years.

And now he's gone.

And my house is so quiet.

Pictures and flowers decorate my house from the funeral.

I wish I could hold and kiss him.

I wish I could smell his sweet little head one more time.

But there is a sweetness, knowing he is finally safe.

Knowing no one can hurt him.

No one will poke him with needles ever again.

No more medicines or seizures.

No more annoying nasal cannula.

No more gasping for air.

No more being tied to cords and machines.

 

 

That hard part of his existence is over.

And I know he is not gone.

He is still here.

He has just changed.

 

 

Like a butterfly, he has morphed into something more.

He is free from that horrible cocoon that held him so tight.

But pain fills my soul when I think about cuddling him.

It was too short.

I hate degenerative brain diseases.

 

 

On the morning of his funeral my Aunt Edris found me and presented me with a tiny box.

A box that had once belonged to my Grandma.

And she handed the box to me and told me, Grandma had asked her to give me this.
 Grandma had told her to give the black butterfly pin to Mary Gay,
17 years ago, before her death.

And Edris had misplaced the pin, but found it again one day, recently.

And she remembered when she saw it that it was intended for me.

 

And I opened the box and saw the black butterfly pin.

I had seen my Grandma Wanda wear it many times.

And now it was mine.

 

Seventeen years after her death, Grandma Wanda sent me the message

that Bradley was flying free from the pains of this world.

And that Bradley is not gone.

He has just changed.

 

 

Bradley the boy who changed everything about us,

is now free to change himself.

And he is now honorably released from his mission on earth.

I'm very grateful Grandma sent me that message on the morning of his funeral.

Proud of Bradley and his completed mission.

He is my butterfly.