Mediocre

 The symbol of the new year is a baby.

Because of the new-ness of life.

The potential.

I've had lots of new-ness this year!

New Baby.

Sick Baby.

New way to feed that baby.

New Doctors.

New schedule.

New everything!

This new baby has changed my life.
I knew, before I conceived him; that he would change my life.

Ironic.

We ARE foreordained for some of the things that we deal with in this life.

I understood that more as this year unfolded.

Yesterday my Sister and I had a lengthy phone conversation.

(142 minutes to be exact)

She had her sixth on Thanksgiving; a girl.

We were talking about all of our kids and school and

about Bradley and how his Docs think he's going to have a low IQ.

One of her children struggles with dyslexia.

She told me it's okay to be mediocre.

She said that her six mediocre children would do more combined than one excellent child would.

(LOL! & true)

 It's not so bad to be mediocre.

  I like to NOT be too extreme.

I like to stay somewhere in the middle.

And I wondered how I would ever make it to the celestial kingdom with that attitude...

 THEN IT CAME TO ME...

(something that I've been taught my whole life)

THROUGH THE ATONEMENT!

The grace of the atonement will raise me out of my mediocrities to the perfect being I imagine.

His grace is sufficient for all men.

So it's okay to try your best; and even if in the end you are still somewhere in the middle.

His grace is sufficient.

Attempt

I'm attempting to make fudge this year.

I'm not having any luck.

If it sets up; it's grainy and crumbly.

If it's smooth; it never sets up.

We had to eat out tonight because the kitchen is a disaster.

I will try again in the morning.

As I was cleaning the kitchen tonight and wiping down every surface,

I got to the spot on the counter where I keep all of Bradley's medications.

And I thought to myself:

"I cannot believe I have a bowl on my counter full of prescriptions for my 5 month old baby"

THIS YEAR HAS BLIND-SIDED ME.

And there are moments where I'm still processing what has happened.

And I feel like at any moment I'm going to wake up from this dream.

But I never do.



And right after that Tom came in and told me he thought Bradley's Mickey button was clogged.

We went upstairs laid Bradley on the bed and took his button out.

The whole time I was shifting my weight back and forth and telling Tom "I can't do it!"

And after we pulled it out

(it took some force because of the pressure)

we saw that it was in fact clogged with a wad of string.

We both said "Ewww"

I rinsed it under hot water, put it back in and it was working again.

This year has been an attempt to make me more than what I WAS.

There have been several times that I've felt like giving up or running away.

But somehow I've made it through.

And hopefully I will finally make some good fudge that is creamy and melts in your mouth and firm.

And it will be SO perfect I will forget about all the mess I made trying to perfect it.

And I think that is what God is doing with me in my life right now too.

And someday I'm going to be so perfect I will forget about the mess I am currently in.



"How did he get sick Mom?"

Last night at dinner the kids had questions about Bradley.

Jacob wanted to know how Bradley got sick.

We have talked about it a lot with them but

I think their brains are finally starting to process the whole thing.

And I think I am actually starting to wake and come out of it too.

I'm amazed I have come through this and still made good decisions for Bradley.

And I told the kids about Bradley's hypo parathyroid.

And I told them that that is why he stopped sucking.

And I told them about the flaps in your throat that cover your airway and your food way.

And I told them Bradley's brain was not telling his flaps to close at the right time.

And I told them that the Doctors think that Bradley

may have troubles learning when he goes to school.

And Jacob said:

"Mom, it is okay. I will help him learn things. I will teach him Mom."

My heart swelled with pride as I thought about what a good brother Jacob is.

He loves Bradley so much.

And I wonder all the time why God sent Jacob a brother like Bradley.

What God wants Jacob to learn from this.

How it will effect Jacob later.

I worry about all my kids dealing with this.

With what has happened and what will happen.

But I KNOW that families are forever.

And we will always have each other.

And God wants us to be together in this life and learn from one another.

And Tom keeps telling me that they will be okay.

That all of them have the capacity to deal with this.

I DID get the special spirits promised to me.

Not only is Bradley special, 

They are ALL special! 

And I am so lucky.

Keep Your Head Up

 We have another child in our ward who has had a feeding tube and a fundoplication like Bradley.

He has cerebral palsy.

 He got stuck in the birth canal and was born with an oxygen level of 30.

The doctors told his mother he would either die or be a vegetable.

He's 12 now.

He's in speech, physical and occupational therapy.

Two years ago he finally got out of his chair.

He can walk now.

His mom says he's a miracle.

His mother and I have recently become closer.

We talk about our boys all the time.

Last night was the ward Christmas party.

We were talking in the corner of the gym and she asked to hold Bradley.

As she held him his head flopped like it does.

She remarked how much holding Bradley reminded her of holding her boy when he was a baby.

Her words stung my heart.

Bradley is 5 months old and he STILL cannot hold up his head.

We go to physical therapy weekly for it.

We practice constantly and he's SLOWLY having improvement.

But nothing like my other babies.

My heart tells me that there IS a neurological reason why

he was not born with the ability to swallow correctly

and now why he cannot hold up his head.

AND THE BRAIN CAN HEAL; HIS HAS ALREADY.

This morning after we had loaded in the car for church,

 Tom turned the key and the car would not start.

The battery was dead.

Tom and I laughed as we pushed the car out of the garage to jump it with the truck.

LIFE IS FULL OF CHALLENGES!

This is part of mortality.

This really is a lone a dreary world that we were sent to.

AND WORK AND TOIL IS PART OF IT TOO.

When we finally got to church we sang Christmas hymns.

One of my most favorite hymns is Away In A Manger.

Today the words spoke to me:

I love thee, Lord Jesus, look down from the sky

And stay by my cradle till morning is nigh.

Be near me lord Jesus; I ask thee to stay

Close by me forever, and love me I pray.

Bless all the dear children in thy tender care,

And fit us for heaven to live with thee there.

This life can be really sad sometimes, can't it?

And we are so lucky to have the love and comfort of our

dear Savior to see us through our sad times.

And as I lay my babe under the Christmas tree this year,

like I do every year I have a baby,

I AGAIN feel my Savior's love.

I know his Heavenly Father and his Savior REALLY DO love him.

And they love me.

And they love you too.

And that no matter what our challenges are, they will be with us to help us through.

Dr. Fiore

This is Bradley Herrick Brinkerhoff.

And he wouldn't be alive today if it wasn't for this man:

 We went to see Dr. Fiore yesterday.

He's my favorite of all of Bradley's doctors.
I like his personality and could see us being friends in real life.


I got to share the exciting news that Bradley can swallow liquids now!

Dr. Fiore was surprised.

Everything with Bradley's g-tube is fine. No infections. No granulation tissue.

And I told Dr. Fiore how tired I am of going to Doctors appointments.

I told him that I'd call him if I had a problem but otherwise
I really didn't want to see anymore doctors for a while.

I told him I've had 3-4 appointments a week since Bradley was released in September.

Dr. Fiore understood and said that we could come see him in six months

and that he trusted me to call him if we had a problem.

I really wanted to squeeze the man and tell him how much I LOVE HIM for saving Bradley's life!

But it seems awkward.

We scheduled the next appointment for June 21st 2012.

That is one day short of one year from Bradley's original due date.

I told Dr. Fiore the next time I'd see him, Bradley would be close to a year old.

He smiled and said, "Happy Birthday!"

How could I ever thank this man for what he has done?

I've told him thank you and it seems so unequal to the service rendered.

The fact that I can have this memory is because of his work:

Dr. Fiore got about $4,000.00 for what he did that night at Sunrise Hospital.

Doesn't seem like enough, does it?

The Christmas Letter - 2011

Christmas 2011

Dear Friends and Family,

It is with love and gratitude that I’m writing this letter this year. We have so much to be grateful for!

This year has been a year of challenges and growth for our family.

In July we welcomed another son who was very tiny. We named him Bradley Herrick Brinkerhoff. He was 4lbs 8oz and 18 inches long. Within two weeks he was admitted to the children’s hospital for failure to thrive. When he was in the hospital they discovered that he was missing his parathyroid gland, which regulates the body’s use of calcium. He also was aspirating liquids into his lungs, which was giving him pneumonia. He was given a surgically inserted feeding tube in his stomach wall to make it easier to feed him. He came home 5 ½ weeks later at 6lbs 4oz. In November he passed a swallow study that observed he was no longer aspirating liquids! He has physical therapy weekly and follow-ups with all his specialists including a geneticist who will be looking at his genes for abnormal connections. It’s possible that he may have a syndrome of some sort but it takes 6-8 months to be seen by the geneticist and so we are patiently biding out time. We love him and we feel that his special spirit has entered our home to teach us more about this life and eternity. He nearly died in the hospital and we know his tiny life is a miracle we were meant to witness.

Madeleine is in the second grade this year. She has received straight A’s so far and we are all impressed with her abilities. She chose to be baptized in October. Tom was able to baptize her and we are so proud of her for being such a great example to everyone around her. Her sweet spirit radiates from her face and when she is home she is a huge help to me!

Jacob started Kindergarten! He’s slowly learning his high frequency words. He’s quite the popular kid and everyone knows his name. He has a personality that everyone loves. He always has something funny to say and keeps us all entertained. We just love having him in our family!

Charlotte turns three in January. Where did the time go? She loves being a big sister and spends most of her day alone with Bradley and I. Grandma has been a big help in caring for Charlotte when Bradley and I have appointments. She loves to sing and dance. She loves taking care of her baby dolls  and reading books.

Tom and I continue to toil along as parents and providers. Most nights we are exhausted from everything there is to do. But we know that God sanctifies our work. I have an online business of handmade fabric flowers that is having lots of success; and I am so grateful for the help it is providing.

We hope that this letter finds you all well! Hopefully this year you too have seen the hand of our Savior Jesus Christ in your life.

Love,
Tom, Mary, Madeleine, Jacob, Charlotte and Bradley Brinkerhoff

The Fairytale

When Tom and I were engaged, I imagined our children.

Our future.

I didn't imagine Bradley's challenges though.

And for awhile I've been sad and felt like the fairytale had ended.

 

But this morning it dawned on me:

THE FAIRYTALE HAS NOT ENDED!

EVERY Fairytale has it CHALLENGES.

Sometimes it's a dragon, or a witch, or a villain.

The happily-ever-after isn't until AFTER the challenge is overcome.

You cannot have a fairytale if there is nothing to triumph over.

It has NOT ended!

I'm currently slaying the dragon.

AND I'M STILL GOING TO HAVE MY HAPPILY-EVER-AFTER!

Roll With It

Some people are born with challenges.

I used to believe that people who had medical problems were making a lot of it up.

That medical problems were caused by poor diet and lifestyle.

I know; I was a jerk!

And someone has

SURE PUT ME IN MY PLACE!

Yesterday was Bradley's circumcision.

It was a surgery because of the way his penis was attached to his scrotum.

He could have formula until 1am and then only pedilyte until  4am. The surgery was at 7:30am.

When we got there, we had a list of questions to answer.

All of which were not the simple "NOs" I used to give.

I had to list his meds, the dosage, and frequency.

I had to go through the history of EVERYTHING he has been through.

It took about an hour.

At a certain point the nurse had questions about his development.

She said he was in the age group of 4-6 months and asked which of his milestones he had meet.

He's only met a few; maybe half the list.

She marked the ones he had met and then said "he's doing just fine"

as I saw her type DEVELOPMENTALLY DELAYED.

We waited for two hours for them to be done.

I worried about him the entire time.

And when the urologist came to get us and bring us back she said

"Everything went well except that it took us just as long to get an IV as it did the procedure.

I finally got him with my loop."

I don't  know what a "loop" is and I don't know if I want to know.

But I take comfort in knowing that he had gas until he got the spinal.

When I finally saw him he was swollen and screaming.

He had tiny pokes all over his hands and feet and he no longer

was wearing the gown they had us put on him in pre-op.

And he's home now and he's double diapered.

The diaper that touches his skin has a hole in it to protect the dressing.

That diaper catches the poop.

The diaper outside the holy diaper catches his urine.

 I have made about 15 holy diapers already.

And he's used them all because of the antibiotics he's on.

And with everything I'm going through and have gone through,

 I have always been prepared.

And truth be told I have ALWAYS loved using syringes!

And it makes me a little crazy when I find Charlotte's dolls with syringes and tubes around them.

And when I hear her say words like "medication"

Three year olds should not know words like that!

But I am reassured by the knowledge that this is meant to be.

Bradley is Charlotte's brother and she will learn to roll with all of this.

 This is what God wants for Bradley AND our family.

Giving and Recieving

And above all things have fervent charity among yourselves:
for charity shall cover the multitude of sins.
1 Peter 4:8

Last night, as a family, we walked around Target looking at Christmas things and dreaming.

There was a large group of teenage girls giggling and talking excitedly
as we passed them by the dollar section.

Tom mumbled to himself, “Wo! Watch out!”

I laughed.

When we got to the back of the store, another group of girls was gathered around a cart with two adults discussing if a 12 year old girl would like some clothes they had picked.
I could tell they were doing a service project.
They were shopping for Christmas for someone;
some family in need.
My heart was warm as I imagined a twelve year old girl
gazing at the beautiful clothes on Christmas morning.

Right after Bradley was released from the NICU we had an appointment across the valley
and so we stopped to fill the tank at the station.
As I slid my card in I realized I had forgotten my PIN.
It had been 7 weeks since I had been shopping FOR ANYTHING!
We had survived on the dinners and service of others.

Service warms the soul.
It sanctifies us.
It makes us more holy.
It makes us more like God.

This year I have been the receiver of SO much service!
Some from long time friends and family;
Some from people I have NEVER and WILL NEVER meet.

Our burdens have been lifted by others.

And I wish that I could repay EACH person who has given,
because I have a work ethic that makes me want to.
But I know that it is impossible.
EVEN if I KNEW THEM ALL,
and gave back value for value what was given,
I could never give them the warmth that I’VE felt, as I received;
WHICH IS WORTH WAY MORE THAN THE MONITARY VALUE!

GODS  HANDS ARE OTHERS HANDS.

I’ve seen, through this trial, that he IS aware of me and my tiny family, and our tiny struggles.

 
I have so much to be grateful for.

And there have been times that I've been upset
with him for giving me this trial.

And STILL God has never forsaken me!

He really does love his children.

Great Parents

 I'm kinda in the mood to complain a little.

Today Bradley had Physical Therapy.

When he was finished stretching with the therapist she said "I can tell you guys are great parents"

I was almost in shock.

I'm sure I gave her a very puzzled stare.

When we got out to the car, I tearfully told Tom that

I had NEVER heard one person at Sunrise tell us that.

The nurses were constantly telling me how much I had SCREWED

up Bradley by having him at home and at 44 weeks.

CONSTANTLY!

And after we were released I really wanted to get a survey in the mail so I could complain about their nurses not being able to keep their opinions to themselves.

BUT I NEVER GOT A SURVEY!
I don't think Sunrise really cares about patient satisfaction.

 But I am grateful that Sunrise DID save his life.

And I'm grateful I get to hang the six stockings this year like I had planned last.

I know that if we had lost him my tears would have watered the

decorations more than they already did this year.

The Endocrinologist is shedding more light on Bradley's Hypo parathyroid.

He said we need to think of it like a birth defect that Bradley doesn't have a parathyroid gland.

He said it can never come back, he just doesn't have one, just like a person who's born without limbs.

Tom looked it up later.

The parathyroid gland is as big as a GRAIN OF RICE!

THAT'S TINY!

What are the chances?

And we can easily control this problem with high doses of oral calcium supplements.

Endo says he will never grow out of this.

Endo said in his practice of 6,000 kids he has 6 or 7 patients who were missing their parathyroid gland, at birth, like Bradley.

Endo also said Bradley is gaining weight, but not growing much in length.

We talked about growth hormones at the age of two.

SCARES ME A LITTLE!

But really, what hasn't been scary about Bradley.

Next week he has his circumcision.

Yep, it's a surgery, at the hospital, where he needs anaesthesia.

He has a urologist too, because nothing is simple for our Bradley.

HOPE THAT WASN'T TOO MUCH COMPLAINING FOR YOU!

But sometimes I just got to vent too!

Repeat the Swallow Study

Monday was a very monumental day for our Bradley.

He passed a swallow study.

He can swallow liquids again without aspiration!

It's a joy to feed him normally again.

While we were waiting to go into the procedure there was another baby boy there.
 He looked to be two months old. I saw his feeding tube sticking out of his blanket.

I smiled at the Dad, who looked tired and stressed and said, "We have a g-tube too!"

The father instantly perked up.

"REALLY?" he replied.

I told him it would get easier when he got the mickey button.

The baby had only had his tubie for 3 weeks and was still venting 24/7.

The dad asked why we had a g-tube.

I said because he aspirates liquids.

The father looked at me with a blank stare.

The mother came back from registering for their procedure.

She seemed interested in the conversation.

Their baby looked gaunt and very small.

VERY much like Bradley had looked in the NICU.

I told the mom Bradley's story.

She looked at me blankly.

She asked if Bradley was having trouble gaining weight.

It seemed like an odd question to me but I responded,

"Before they figured out that he was aspirating; he did not gain weight."

She still had a blank stare like she didn't know what I was talking about.
I thought they had a g-tube too and so she would know.
But she didn't act like she did.

Their names were called and they went into the procedure.
The walls were thin and I didn't mean to overhear but I did.
Their baby was aspirating too. He was a silet aspirator.
He hadn't been gaining weight and his Doctor had ordered a feeding tube because he wouldn't eat with his mouth while he was in the hospital.
But NO ONE had done a swallow study on him.
And because he wasn't gaining with the supplements through the tube,
his doc had ordered a swallow study.

THAT'S WHY SHE DIDN'T UNDERSTAND A WORD I WAS SAYING.
They had a similar situation they were just finding it out in a different order than we were.


When they were finished they came out.
The mom was as white as a ghost and looked like the air had been knocked out of her.
I felt a twinge of her pain.
Reminded me so much of the time I had found out about my boy.


IT IS SO SCARY TO HAVE A CHILD THAT ASPIRATES!
Every time they cough you worry they are regressing.
And then to hear that it is neurological is not easy either.

A HUGE WEIGHT HAS BEEN LIFTED OFF MY SHOULDERS.


 I will never EVER forget where we were.
This has been the biggest challenge of my life.
And I'm so grateful it was so short lived.


I'm going go give Bradley a bottle now and savory every moment of it!