Friday, July 27, 2012

Miracle of the Heart

My aunt Terry was in a car accident a few years ago.
Her car flipped and she broke her colar bone
but other than that she seemed to walk away from the accident, unscathed.
A few weeks later, she could not get out of bed.
They took her to the emergency room.
And then parts of her body started shutting down.
The doctors said her system had been shaken up by the accident
and caused her body to start attacking it's self.
She lost her ability to breath on her own and was given a tracheotomy.
She was in the ICU for several months.
When she was released the nurses told my uncle she was going to require lots of care.
She slowly improved.
My uncle worked hard to mend her.
Everyday something got better. Stronger.

When Bradley was in the NICU she called my mom and told her, to tell me, "Miracles happen!"

A few weeks later was her funeral.
She had passed after trying to clear her trach and suffocating.
It was her time to be with Heavenly Father again.
Whenever I feel lonely and sad I think of her laugh and know she is laughing up there right now!

I believe in miracles!
I always have!
And when Bradley was about 3 months old and started rolling,
 I thought he would have a full recovery and that we would be witnesses to a mighty miracle.
But I know that that is not what God wants me to learn with Bradley.

As time has gone on, and new conditions have come,
 I've realized a full recovery will not be the miracle Bradley will be part of.
Instead I think he will work a different kind of miracle.

The miracle God will work with Bradley is a change of heart.
Mostly mine.
And that maybe the mightiest miracle ever!

Yes, Aunt Terry, miracles do happen!
Even miracles of the heart.

Tuesday, July 24, 2012


I have been wrestling my demons today. 
My fears.
Problem is I don't know if I should fear it or not because I don't even know what Bradley has.
SUPER annoying!

I have tons of appointments right now.
It must be because the baby boy has turned one and things are progressing in a negative direction.
Appointments are very hard for me.
They are so sad.

They are also somewhat of a reality check.
The docs usually say something that makes me realize what I am dealing with.
Today it was the neurologist.
We were talking about Bradley having these oxygen problems now.
That his baseline need for oxygen has gone up.
His swallowing problems too.

And I asked if he would be able to see a regression
in Bradley's brain if he did another MRI and compared them.
He told my other children to be quiet and said,
"Having a syndrome means that there is regression!
He has a syndrome and so he WILL regress."

And I told him I have a friend with a son with a syndrome who is near typical now in his teens.
And I named that syndrome.
And he said sometimes children with that syndrome do become near typical.
But if Bradley is having these problems, we know he is not doing what her son did.
And Bradley is regressing.
And I almost cried.
But I held it together till I got out to the van.

Actually, I didn't cry until I got home.
And I stopped on the way home and got the kids lunch and took them to the water park.
And I ran with Bradley through the water until he fell asleep in my arms.
And I stopped and got them all snow cones on the way home too, because life is too short!

And I said a prayer this afternoon
and God again told me he would not heal Bradley because of Bradley's faith.
And every cell in my body understood how righteous Bradley is.
An amazing righteous being whose mortal life is slipping through my fingers.

Sunday, July 22, 2012

If thou faint in the day of adversity, thy strength is small

Proverbs 24:10

Yesterday I got a copy of the letter from the Physical Therapist
that was sent to the insurance to explain our need for a wheelchair for Bradley.
It is three pages long and talks about Bradley and all of his disabilities.
Everything he cannot do.

The letter ends by saying this;
"Bradley will require a means of mobility for the remainder of his life."

That head!
If I could hold it up for him, I WOULD!
I so desperately want him to use his trunk and control his sitting on his own.
But as much as we try, he still cannot.

He has given me so many burdens.
Things to worry about and fret over.

And still God has been with us.
Helping us.
Comforting us.
Showing me what to do.
Showing me what to feed Bradley.
Prompting me to go to the hospital.
Making me stronger.

This has been the first thing in my life I have really had NO controll over.
And I know, in the end, it doesn't matter if he holds up his head ever.
And that comfort comes from God and knowing the eternal picture.
And me turning my will over to Gods will.

And I will ease the burdens which are put upon your shoulders,
that even you cannot feel them upon your backs,
even while you are in bondage;
and this will I do that ye may stand as witnesses for me hereafter,
and that ye may know of a surety that I, the Lord God,
do visit my people in their afflictions.
Mosiah 24:14

Friday, July 20, 2012

The Boy Who Changed Everything

 So much has changed in this year.

Our hearts.

Our home.

Our children.

Our minds.

Our testimonies.

Tonight my heart is full.

Grateful to God who has given me so much.

I could have never changed without this boy.

He changed everything!

Part of me wants to believe he willingly came to this body; to these challenges.

Weither he willingly came or not, I will eternally be grateful to him.

I used to believe my children would be eternally grateful to me, who bore them.
But he turned that table.
And I feel like he bore me.

I guess that is part of parenthood.
Realizing they are teaching you, more than you are teaching them.
Grateful to God tonight for sending me my teacher and
the boy who changed everything.

Tuesday, July 17, 2012

Aspirating Again

Bradley was acting way better by Friday. I had given every med the pulmonologist had prescribed.

He had also suggested we stop feeding Bradley by mouth.
And I had.
But the weekend came.
And Tom helped me with Bradley while I made flowers for my exploding ETSY shop.
And on Monday's appointment the pulmonologist heard a wetness in his lungs.
And I called Tom and told him that he had proved my suspicions and that we now had more reason to believe Bradley was aspirating again.
And Tom promised he would stop feeding Bradley by mouth.

And this morning I decided to remove the nipples and rings from the spot where we keep the bottles so that we all were not tempted to feed him by mouth.
And I realized I only have three screw on caps for my bottles.
And I decided to go to the store to get some more
so that we all can refrain from using Bradley's mouth.
And the best ones are from Babies R Us. They are the tightest and never leak.
And so I decided to make the trip.
And when I got into the store, I felt like I was in hell.

Every aisle was covered with things Bradley cannot use.
Toys, rattles, spoons, nipples, bottles, bouncers, walkers!
And it made me sad to be there with everything mocking me.
Knowing that his babyhood is coming to an end and that I'm done having babies too.
And this is it.

And Charlotte wanted some over priced baby spoons and I caved and let her get them.
Even though I'm sure Charlotte will use them more than Bradley, I still wanted them.

All the hopes I had this year did not materialize.
Rates of development that make us non-consumers of baby products.
It's a weird feeling.

I am grateful I have had three very health and typical children.
I never realized how wonderful it was to have a typical baby, until I didn't.

Sunday, July 15, 2012


 How gentle God’s commands!
How kind his precepts are!
Come, cast your burdens on the Lord
And trust his constant care.
 Beneath his watchful eye,
His Saints securely dwell;
That hand which bears all nature up
Shall guard his children well.
 Why should this anxious load
Press down your weary mind?
Haste to your Heav’nly Father’s throne
And sweet refreshment find.
 His goodness stands approved,
Unchanged from day to day;
I’ll drop my burden at his feet
And bear a song away.

Bradley had his follow up at the pulmonologist this week.
The Pulmonologist heard some rattling in Bradley's lungs.
He prescribed a handful of meds.
He said he would treat Bradley acutely.
He said he was ordering a bronchoscope to see if Bradley's breathing stuff was right.
He just wants to check it out. Make sure all his stuff in his throat is right.
That there are no obstructions.
 I'm hoping it comes back normal and no further things are required.
And that Bradley eventually grows out of his need for oxygen.
I told the pulmonologist I did not want a trach.
And he said "You will want one if it helps your child breath."

 I came home in tears.
Worrying that this school year will start with the placement of a tracheostomy.
I'm hoping I'm wrong.
And I called my Mommy that night and cried on the phone with her.

Later this week I was at the DMV to get a new driver's licence. Mine was expiring.
I asked the lady for an application for a disabled placard, since Bradley is getting a wheelchair.
I told her about Bradley.
She pursed her lips and frowned a bit,
and turned her eyes down and said she was sorry.
I told her he is okay. I told her he has taught me a lot.
The usual things I tell people.
And she said that she had a stroke once and had a full recovery.
And she asked me if he will ever walk.
I told her no one knows, but we do have hope that one day he will.

And I came home and read the application
and read the seven things the DMV says makes the applicant worthy of a placard.
Bradley has six of the seven.
I think we will get it.

 Tom has a co-worker who's wife prays for Bradley all the time.
He asks Tom often how Bradley is doing.
And he always says his wife is STILL praying. 
He was raised Mormon and she was raised in another Christian sect.
And neither of them go to church anymore.
And she is always praying for Bradley.

Had Bradley not had these medical problems, there would be no reason for that woman to pray.
Bradley is a missionary of God.
He gets people on their knees,
praying to a God they have not seen.
Exercising their faith.
As disabled as he might seem, he has more power than any of my other children.

I am proud he is my son.
And I will always proudly push him.
Grateful he is a warrior, for his God and mine.

Monday, July 9, 2012

The Chair

I missed Grandma's funeral on Saturday because Bradley and I have had a horrible cold.
Actually the worst cold I have ever had.
And we stayed home in case Bradley's cold caused him other complications.
Tom and the three other kids packed and left Friday afternoon.
On the drive Tom said he and the kids had some deep conversations about death.
And Tom was able to bear his testimony to the kids about Heavenly Father's plan.
And Tom said Madeleine knew quite a bit about death and the life after and he was surprised.
I told him it is because I've had to have talks with her about it, because of Bradley.

My children have been dealing with the realities of death since Bradley's birth.
Death is so much closer and earlier in their lives, than it ever was for Tom and I.
I know there must be a reason they are experiencing these things in childhood.
There is something in each of their futures that this experience is preparing them for.

Today Bradley was fitted for his wheelchair.
The dealer came to the physical therapy appointment.
He measured Bradley and asked me questions.
We talked about headrests and side supports.
And g-tubes and oxygen tanks.
And the PT and the dealer were talking about things I don't understand yet.

And he said we would most likely get approved for a base for the chair
since we live in a two story home.
The chair we picked is mostly grey with accents in your choice of color.
We had the choice of blue, pink, green or orange accents.
I picked orange, which is Jacob's favorite color.
I'm sure it is Bradley's favorite color too and if he could talk I think he would tell us so!

The dealer was very careful not to overwhelm me with questions or hurt my feelings.
And when I asked he said he was sure Bradley needed a chair
 and he would do everything he could to get the insurance to cover it.
I've never shopped for a wheelchair before.
I hope everything goes really smoothly and
we get it in the three month time frame they are expecting.
Bradley is growing out of the infant car seat/stroller very quickly.
And I'm not sure how I'm going to go grocery shopping with it, but I know we will make it work.

Bradley not walking was one of my biggest fears when
I brought him home from the NICU last September.
And now I am facing that fear everyday.

Life makes you face your fears, doesn't it?
And even though I am surprised Heavenly Father sent me Bradley,
I really understand the wisdom in it.
He is making me grow.
He is making me face my fears.

I plan on squishing my fears.
And someday I will never be afraid of anything, ever again.

Saturday, July 7, 2012

Two Frogs

 Every morning we must make choices.

Sometimes the only choice we have is our attitude.

Even with all I'm going through I'm still choosing to be happy.

 I read this story when I was a kid in my Mom's book of inspirational stories.
There was something about this story that I really loved as a child.
I think I read it in a talk or two even.
And I still love it.
And it really applies to my life now.

Two Frogs

Two frogs fell into a deep cream bowl,
One was an optimistic soul;
But the other took the gloomy view,
"I shall drown," he cried, "and so will you."

So with a last despairing cry,
He closed his eyes and said, "Good-bye."
But the other frog, with a merry grin
Said, "I can't get out, but I won't give in!
I'll swim around till my strength is spent.
For having tried, I'll die content."
Bravely he swam until it would seem
His struggles began to churn the cream.

On the top of the butter at last he stopped
And out of the bowl he happily hopped.
What is the moral? It's easily found.
If you can't get out -- keep swimming around!

Author Unknown

Tuesday, July 3, 2012

Turning One

Tomorrow is the day I was planning on having Bradley a year ago.
I have always wanted a boy who was born on the 4th of July.
Reminds me of Steel Magnolias :0)
And it seemed like I was going to, because the 4th was two weeks after my original due date.
But God has a funny way of screwing up our plans sometimes.
Sometimes he has his own plan.
Shame on me for not understanding that before Bradley.

 I have had a terrible cold.
The kind of cold where when you lay down you cannot breath,
and so you breath through your mouth, which dries out your throat and starts a coughing fit.
So today, after I could not take laying down anymore, I cleaned out my closet.
It still had maternity clothes in it from last year.
I haven't worn any of them since the pregnancy, although I'm sure most of them would still fit.
And they were getting dusty along with the other smaller clothes I have not worn for 2 years.
The bar in my closet was also bending from having too many multiple sizes hanging on it.
And so I started purging.
And it felt good!
And I got to a shirt I had purchased when I was about 5 months pregnant with Bradley.
The type of shirt you buy with the intentions of wearing after the pregnancy too.
It was a bit more roomy and would have been the perfect shirt to nurse in.
And it made me emotional to see it.
Realizing my plans had never materialized and now I wanted nothing to do with the shirt.
I tore it off the hanger and shoved it in the bag
and told Tom that this was becoming more emotional than I had imagined.
I looked to the top shelf of the closet which has my book on breastfeeding,
my slings, my baby things that help with nursing and I wasn't sure what to do.
I grabbed them at first thinking I would throw them out, and then I suddenly didn't want to.
And for a moment I understood hoarders.

I talked with a close friend tonight about her life changes and some of the crap she is going through.
We both laughed when I said "Maybe we are at the age when crap starts happening to us."
Both of us admire each other for being able to handle what we have been dealt.
Although sometimes I worry I am not strong enough.

And I know in the end all will be made right.
That is what gets me through!
No matter what more happens to Bradley and I.
We will have it made up to us one day.
I know it!