Diamond Making

I was an actress in high school.

When you get on the stage, in front of the audience, your body shakes like crazy.

But if you channel that energy, into stage presence, you can captivate the audience.

I was quite a good actress. I still am.

I was in a play the spring before Bradley was conceived.

And I'm told I have amazing stage presence. That people notice me, even when I have lesser rolls.

I have honed this skill.

I know how to channel my energies.

I learned it in high school.

This year was FULL of stress for me.

I've had lots to worry about, and stress over, and to be nervous about.

But as in high school when the pressure has been put on me,

I've used that pressure for something good.

I've pushed that pressure out of me in another way.

IT HAS felt like diamond making.

There have been some pretty tough moments.

Moments where I felt like I was splitting in two.

BUT

 I'm still here; and so is Bradley.

And I'm starting to feel like a diamond.

The hard things CAN become great things :)

Typical

Today was physical therapy.

The big kids were out of school for staff development.

I could have left them with someone, but I figured

it was the perfect day for them to go and see what Bradley does.

After all, it is pediatric physical therapy, and there are toys and things for kids to do everywhere.

While we were waiting for Bradley's session, 

two, three year old girls came in, from outside, by themselves.

They looked similar in age and they were for sure sisters.

About ten minutes later (yes, TEN!) their Mother came in

and the reason why she was so slow soon became very apparent.

She had a boy with her who was in a walker.

He was holding onto it and barely walking in the typical fashion.

VERY SLOWLY she opened the door and followed him in.

The minute he saw the toys, he let go of his walker and crawled over to them.

I asked if they were triplets and the Mother said "Yes!"

He was so cute.

He was a pure spirit.

I could feel it.

I have met SO MANY pure spirits these last four months!

The office has a window into the room in which they do occupational therapy.

Do you know what OT is?

I didn't before I had Bradley!

OT is therapy to teach kids the correct way to play.

Theoretically Bradley could do OT now because he is not reaching for toys.

And their OT room has swings that hang from the ceiling.

It looks pretty fun!

 

Jacob stood on a chair and peered into the OT room wishing he could ride on the swings.
Another little boy came next to Jacob and said "That's our OT room."
Jacob had no clue what the kid was talking about and so he said
 "Yep, that's where kids who don't do things the right way go to work on it."
My heart skipped a beat.
But the child who should have been offended asked Jacob to play with him.
Their exchange was so innocent and lovely.

 And I think we have finally found the right therapist for Bradley.

Her and Bradley click.

Today she told me that Bradley has a plan, and that she is here to make sure he lives that plan.

I loved that she called Bradley's life a "plan".

The longer I live with all of this, the more I understand that this IS, indeed, the plan.

And we talked about the helmet that he's getting.

She told me that sometimes typical kids are recommended for helmets,

that really don't need them,

 and so their parents see little improvement,

and so there is a group of people who do not think helmets work.

But she thinks that his head is mishappen enough that we will see a difference.

She also thinks that when Bradley's head is more even it will help him to hold it up easier.

It's so heavy on the one side.

And she said that if he COULD hold up his head we could simply

sit him up and the flat spot would go away.

But he cannot hold it up. And so he NEEDS this helmet to keep him off his flat spot.

He is not typical.
And I have KNOWN he was not typical from the time I first saw him.

But I'm learning that I want to be more like Bradley.

Bradley is lifting me out of my typical life.

I feel that lift when I look at him.

When I study his non-typical ways.

And all of these pure spirits that, I would have otherwise never met, are having that effect on me.

They ARE the pure in heart.

And they do see God.

And I am lucky that I get to be with them.

Six Months Ago Today....

Six months ago today, 

I was laying in my bed fretting about the tiny baby I had had earlier that morning.

I had lost lots of blood after he was born.

I had passed out shortly after his birth.

And I was to lay flat on my back for 12 hours.

I was showing signs of anemia and Tom had made me cereal and scrambled eggs.

My mom had gotten here a few hours after noon.

When she got here, I was worried and dizzy and scared.

And Tom came up the stairs with Bradley and the bottle he had been eating and told me that he was a strong child and that he thought he just needed to gain weight.

And my Mom looked at him and told me the same.

And I got on Facebook and announced how tiny he was and EVERYONE told me that he was tiny but that they knew someone who had been tiny at birth and now they were 6'5" and 350lbs.

And I wasn't really worried about his size.

I was worried because he had come SO late and looked so emaciated.

And my Mothers intuition told me there was something wrong with his tiny body.

And now we know that calcium does more than just grow bones.

We know that calcium aids all muscle function and that when the body severely lacks calcium

EVERYTHING SHUTS DOWN!

We've learned a lot these last six months and I'm anxious to learn even more in the next.

Valiant

This child has changed my life.

Look at his eyes in these pictures.

Look how deep his soul is.

And he is so strong to have made it through everything he has.

His eye contact has changed, and my feeling is, that there was some damage done in the hospital.

And it's no one's fault.

He is missing a gland in his thyroid that regulates his calcium.

 And the lack of calcium almost killed him.

And the damage that was done was what God wanted to be done.

And now I'm dealing with that.

And I'm starting to feel at peace with it.

I'm starting to understand what a valiant spirit I was given!

And it is NOT sad!

IT IS GLORIOUS!

And that is worth every bit of inconvenience I HAVE AND WILL experience with his care.

I have always felt God's LOVE around Bradley.

ALWAYS!

I thought it would end when he got out of the hospital.

But IT DID NOT!

And Bradley brought that into my home.

 

ARE YOU JEALOUS?

YOU SHOULD BE!

Frisbee by the Pond

Today, after church, Jacob told us that he remembered being with Bradley in heaven.

He told us that him and Bradley were playing Frisbee by a pond.

I told Jacob to tell us more.

And Jacob said he couldn't because he only remembered half of it.

It IS like they have know each other FOREVER.

Jacob cannot leave for school without hugging and kissing Bradley.

One day he came back, frantically knocking on the door

and crying because he had forgotten to say goodbye to Bradley.

And Bradley ALWAYS smiles when Jacob is near.

 Tonight Tom and I have been talking about the possibility of Bradley having brain damage.

We have been talking about that first week when Bradley was unconscious and in the PICU.

AT THE TIME

we did not fully grasp what was going on.

I remember Tom telling me one night that they were just treating Bradley

because they HAVE to treat children who are admitted.

WE DID NOT GET IT.

I remember when the surgeon came and told us that Bradley could die

and him apologizing for being so direct.

That was a crazy night.

And the next day we asked Bradley's nurse if he was still sedated because he was not awake.

He was not moving or crying or anything.

And the nurse said he was not on anything that would make him calm.

She said that was "just him".

And the nurse, the next day, had been his nurse the night he had the emergency surgery.

And she came in and gave me a big hug and told me that she had gone home to her husband

and son and cried and hugged them very tight that night.

She had left at shift change before the surgery and thought that perhaps her patient wouldn't make it.

HE WAS IN THE PEDIATRIC INTENSIVE CARE UNIT!

HE WAS UNCONSCIOUS FOR A WEEK!

And although no one ever said the word, it was like he was in a coma.

One week later, after we had taken him to the hospital, I was in church.

I was listening to one of my most favorite hymns being sung by a good friend.

Come, Thou Fount

Bradley was still in the hospital; things unsure with him. Still unconscious.

I missed him and wondered why we were going through this and

 knew that THIS trial was tuning me to sing Gods praise.

As she finished my cell phone buzzed with a text message.

It was my parents, who had stopped to see Bradley on their way out of town.

My Dad said that he was awake and that I needed to come see him.

I hurried down to the hospital and held him.

He was finally there with me again.

I hadn't seen the whites of his eyes for a week.

And Tom and I are starting to see that he's not developing like our other babies.

And we are starting to see that he has jerky, uncontrolled muscle and eye movements.

And we are starting to see that there is possibility of brain damage.

And I think, I'm starting to see it because I'm ready to,

but also because he should be growing out of these things and he is not.

AND I KNOW THAT I WAS FOREORDAINED TO DEAL WITH THIS.

As hard as this is

THIS IS and was WHAT WE WERE MEANT TO DEAL WITH.

I never imagined this. But this is it.

And I believe that Jacob and Bradley did play Frisbee by the pond in Heaven.

And that Bradley and Jacob knew that Bradley was going to have these challenges and so they were enjoying their time together up there in Heaven before they came and got their bodies.

And a few minutes after Jacob told us that, I heard him talking to Bradley about it.

And I heard him ask Bradley if he remembered it.

And I saw Bradley smile.



What Dreams May Come

I had a dream last week and I've been thinking about it ever since.

In the dream I was at another ward member's home.

She was holding a scout activity and teaching different crafts.

I was looking around at all the boys and the different things that they were doing.

My attention was caught by a 14 year old boy who was very attractive.

He had black hair and the cutest face.

I kinda had a crush on him.

I noticed his young arms and how strong and toned they were.

He was learning how to feather sculpt and was quite good at it.

I asked him to make me a feather.

He smiled and I was taken back by his good looks.
He reminded me of Tom, when we were younger.

It was time for me to leave so I left pushing Bradley in his stroller.

We walked out into the cold dark air and I suddenly felt VERY scared.

I was alone in a really bad neighborhood.

I was far from home and I didn't know how I would ever get back on foot.

I kept thinking about that boy and wishing he'd come and rescue me.

I got to a bus stop that was full of people and I looked down at

Bradley and he was out of his belt and flopped over.

I straightened him up, and buckled him back in.

I asked the people if this bus went to Henderson.

They didn't know.

I tried to call Tom and my cell phone would not work!

I felt so alone, so cold, so scared.

AND I could not stop thinking about that boy and wishing that he would come save me.

I woke up and realized, that boy was Bradley.

My eyes sting today from crying.

I have been fretting all day.

My boy won't hold up his head.

He's six months old in a week.

When I went to get Jacob from school, I opened Bradley's door

and he was flopped over in his car seat.

His head almost touching his toes.

It's like he has no strength or something sometimes.

It is a regular occurrence.

I don't know what it means when you cannot hold up your head.

I know that physical therapy weekly has not helped much.

And the exercises that they show us how to do, we practice constantly, with little improvement.

I'm so worried that Bradley is NEVER going to hold it up.

I'm so worried that there is something more that we don't understand with him yet.

We have put off seeing the neurologist at the advice of the pediatrician.

But I'm starting to think that we do need to go see her.

I'M SO SCARED!

AND I DON'T KNOW IF IT'S BETTER TO LIVE IN A NAIVE BLISS OR NOT.

I just want him to be the normal young man I'm dreaming of.

The young man I imagined when I heard he was a boy.

That is what every Mother wants.

AND I don't know if he will be THAT in THIS lifetime.

But I know that God wanted me to see who he really is and so he gave me that dream.

And I cannot wait to see Bradley like that.

 In this life or the next.

I have hope for that day.

heelsticks - OK

I'm currently doing everything, I never thought, I would ever do.

When Bradley passed the swallow study I was so excited to give him liquids!

I came home, sat on the couch with him, mixed a 4oz bottle and put it right into his mouth.

To my surprise he didn't suck on it like I thought he would.

He actually pooped out after only 1oz.

I told him that this was the moment we had been waiting for; LIQUIDS!

But he didn't listen.

He was very fussy that day and didn't eat much.

By that afternoon I remembered what someone had said at some point.

Babies with fundoplications like Bradley, eat BETTER while being vented.

So I sat under my rubber band string, opened him up and TONS OF GAS escaped.

And then he chugged down a whole 4oz bottle!

He was HUNGRY and he hadn't burped so he couldn't suck!

I decided to hang rubber bands from more places in the ceiling

so that I could feed him sitting anywhere.

I still have the rubber bands up and use them daily.

 When we are out, it is easier to give him a bottle in his car seat so that I can hang the tubbie on there.

It's a hassle!

And he doesn't get held as much as my other babies did

BUT HE HAS TO EAT!

We cuddle later. 

He had to have his blood drawn today.

He has to have it done every month otherwise he will revert back to this boy:

I remember when I thought this picture looked healthy.

Perspective.

But anyway, the phlebotomist we got today was a jerk!

She wouldn't listen to anything I was saying about his sites being blown.

She used tourniquets on his every limb.

I was about to get up and kick her a** and

then I felt a sense of reason wash over me as I told her firmly,

"YOU ARE HURTING HIM!"

"This doesn't hurt" she quipped back!

I said LOUDLY, over his cries, "YES-IT-DOES!"

She finally stopped and got a lancet to do a heel prick.

By this point Bradley had lost it!

He was screaming bloody murder because he did not trust the woman.

She had touched him too much.

Reminded him too much of times before.

My big kids were in the waiting room with Tom.

They peeked around the corner into the space where we were.

 Seeing their faces calmed me down.

They were all stair stepped and perfect looking.

And I looked down into my arms and saw my last little piece to my perfection and I knew that

ALL OF THIS CRAP

was going to be okay in the end!

As she filled the last vial and squeezed one more drop from Bradley's foot,

I thought about our Savior and him bleeding from every pore and how much pain HE felt.

And how his Father felt looking at Jesus and then looking back at US and knowing it would be OK!

What a marvelous plan it is.

How much our Father in Heaven loves us!

I think that was a great moment for me.

I saw a glimpse of eternity.

And I would have never seen that without Bradley!

NEVER

Prints in His Hands

   

My patriarchal blessing talks about me becoming a Mother.

It talks about the weight of the calling of being blessed to be a Mother.

And it says that if I hold fast to the gospel principles I will reap the full benefits of that blessing.

There have been Sundays I've thought about ditching church.

Especially with Bradley's health history.

And all of the children and their germs at church.

But I KNOW that my job of being a Mother will go smoother if I take my kids to church.

And so today I took them. Bradley and all of them.

Sacrament was wonderful.

The speakers spoke about the new year and commitment to our new goals.

Then in Sunday school the teacher introduced the section of scriptures we are studying this year.

The Book of Mormon.

Most non-Mormons think the Book of Mormon was written by Joe Smith and so it is about him.

But it is NOT!

It is about our Savior Jesus Christ and his life and ministry on the American Continent.

The teacher asked us to tell our favorite part of the Book of Mormon that testifies of Christ.

He went around the room.

Each person giving their faves.

My heart was racing as I knew my most favorite part of

the Book of Mormon and I felt inspired to share it.

When he got to me, I got emotional and so I could not say what I had wanted.

But THIS is my favorite part:

3 Nephi 11

13 And it came to pass that the ^aLord spake unto them saying:

14 Arise and come forth unto me, that ye may ^athrust your hands into my side, and also that ye may ^bfeel the prints of the nails in my hands and in my feet, that ye may know that I am the ^cGod of Israel, and the God of the whole ^dearth, and have been slain for the sins of the world.

15 And it came to pass that the multitude went forth, and thrust their hands into his side, and ^adid feel the prints of the nails in his hands and in his feet; and this they did do, going forth one by one until they had all gone forth, and did see with their eyes and did feel with their hands, and did know of a surety and did bear record, that it was he, of whom it was written by the prophets, that should come.

I really hope that someday when I see the Savior again

 he will invite me to do the same and come touch his hands and his side.

And I hope that in that moment I remember with a perfect memory what he did for me on the cross.

What he did for my children.

For all of mankind.

That we too may become perfect again.

That our short comings, our imperfections will be made up; and be no longer.

And that Bradley will GET the perfect body that I so badly want for him.

That our time that we didn't have together will be made up to him and I; somehow.

I'm excited for that day.

And I imagine it often.

And I didn't get to say that; but that is what I know will happen.

Progression

I've been dreaming about holding Bradley on my hip.

I look down and to my left and he is there staring up at me with his beautiful long lashes.

I'm longing for the day when he finally has enough body control to do it.

Last night I thought I'd try to get him to do it.

I spread his legs and wrapped them around my side as I supported his back.

I looked down at him like I do in the dream.

And he let out the loudest yelp you have ever heard.

It's not time yet.

He STILL has had SO MUCH PROGRESSION!

Everyday he gets better.

Looks better.

But I feel like I'm watching a REALLY slow movie.

I'm just impatient.

The docs all think, that for him, he's doing great.

And as his Mother that first qualifying statement really bugs me!

I want him so badly to be like my other babies.

But the truth is he's not my other babies.

"This is a world in which we are to prove ourselves. The lifetime of man is a day of trial, wherein we may prove to God, in our darkness, in our weakness, and where the enemy reigns, that we are our Father’s friends, and that we receive light from him and are worthy to be leaders of our children—to become lords of lords, and kings of kings—to have perfect dominion over that portion of our families that will be crowned in the celestial kingdom with glory, immortality, and eternal lives."
Brigham Young

A few weeks ago we were sitting in the foyer at church.

A friend of mine who had her baby 4 days after Bradley, came walking in.

She was holding her boy on her hip.

I shot a look at Tom.

After she passed I told Tom that Bradley wasn't a hip baby yet!

Tom said her baby didn't spend time in the NICU or unconscious either.

We are judged according to ourselves.

SO GLAD FOR THAT!

The judgement will not be a comparison.

We will not be judged against our peers.

What a merciful Father we have.

And as Bradley's Mother, I judge him according to his whole existence.

 (others do not)

And that is how we will be judged by our Father.

He will take into account our WHOLE existence.

He will understand where we've come from, and what we've been through.

And only he can do that!

Because he's the only one who has really known us from the beginning.