Saturday, September 29, 2012

Come What May and Love It

To watch my child struggle with his health is one of the hardest things I have ever had to do.
It is so unlike anything I imagined for any of my children.
 To say "at least we have our health", does not apply to us anymore.
I am struggling with one of the hardest challenges perceived by others.
I think about it constantly. How can I make Bradley better?
It consumes my every thought.
There is a sick feeling in the bottom of my stomach, when I imagine being him.
It seems so unfair to have these challenges at birth!!
And to have pneumonia month after month after month?
Oh, that makes me ache for him!
And when I am in the depths of my despair;
when my brain can hardly handle the thought of everything I have to do to keep him alive;
I feel pure love from our Heavenly Father.
Urging me onward and upward.
Like a pillar of light around Bradley and me.
Letting me know, it is going to be okay, no matter what!
I have this reassurance at least three times a day.
Pure love and light.
A blessed assurance.
And that is how I keep going.
"The Lord compensates the faithful for every loss.
That which is taken away from those who love the Lord will be added unto them in His own way.
While it may not come at the time we desire,
the faithful will know that every tear today
will eventually be returned a hundredfold with tears of rejoicing and gratitude."
-Joseph B. Wirthlin


Tuesday, September 25, 2012

Learning to Let Go

I am the mother of some of the sweetest spirits! 
I feel so blessed every day to have them.
One night, while we were in Utah, my brother, John was telling me mission stories.
There is one story I cannot stop thinking about.
My brother's companion had baptized a new member in a font in Uruguay.
 The font had some bacteria in it. And he had a cut on his foot.
Later, when a red line started coming up his leg, he suddenly fell very ill.
John said that he was running a high fever, convulsing
and telling John that he didn't want to die in Uruguay.
John called his mission president.
They were in an area that was six hours, from a hospital, in a fast car.
The mission president asked John to go get his companion some antibiotics from the pharmacy.
Pharmacy's in Uruguay offer all medications over the counter.
So in the dark streets of Uruguay, in the middle of the night, my brother ran, on foot to the pharmacy.
When he got there the pharmacist told John
he needed an amount of antibiotics that could only be given by injection
and asked John if he could do that.
John said he had given shots to a horse before.
The pharmacist said it would be the same kind of thing.
So John took the medicine back home and gave his companion the shot.
He put his companion in the shower to cool his fever.
Last week his companion contacted John and
said he was home and thanked him again for saving his life.
I'm sure the boy's Mother is glad he came home.
I'm sure that missionary had more work to do,
and so God put him with a companion who could give him an injection.
When we arrived at my Mom's house last week,
I laid Bradley on the floor and went to unload the car.
It had been a long day on the road and I thought Bradley would like rolling around.
And suddenly I heard my Mother yelling that Bradley had thrown up.
She was alarmed by the color of his spit up, but when I saw it, I realized it was just his tube food.
I told my Mom that he was okay.
But that he shouldn't be throwing up because he aspirates when he does.
The next night Bradley had a high fever and was very fussy.
He needed oxygen too.
The next night, he had a fever again and was needing even more oxygen.
I called the pulmonologist and told him what had happened.
I told him I wasn't going to take Bradley to the
small town hospital and risk them life-flighting us again. 
He understood.
He called a prescription to our pharmacy in Utah that was an antibiotic for aspiration pneumonia.
Bradley was better that next day after taking it.
So it seems we do have a problem with aspiration pneumonia.
Poor Bradley.
I wish his lungs could catch a break!!

And today I saw the GI who said we are going to first try slower continuous feeds.
Feeding Bradley 24 hours a day instead of 18.
Bradley has also lost weight, which is not okay.
So the GI wants him to get down even more food.
I think we will figure this out someday.
The GI said if he still gets pneumonia, we will put in a g-j tube.
The g-j tube bypasses the stomach and goes directly into the jejunum.
It has to be placed in a procedure.
If it gets pulled out, it has to be placed in a procedure again.
And when it needs to be changed, it is again placed using endoscopy.
So it's a bit more complicated, but if it would get him off the oxygen, I will do it!!


You know that there really is one who is in controll.
He can give and take as he pleases.
Hopefully we all can enjoy the things he gives and let go of the things he takes away.
That is the tricky part of life.
Learning to let go.
As hard as it is, I know that it is possible.
Learning to let go.

Tuesday, September 18, 2012

Perfectly Placed

Today we saw a geneticist in Salt Lake City.
We are seeking a second opinion, not because we think the first was wrong.
We want to have another set of eyes look at Bradley and see if they see anything they understand.
I took these pictures of Bradley when he was only 4 days old and I left them with the geneticist.
These four pictures represent a very innocent time for us.
A time when I thought he was very small, but possibly very typical.
He really is a beautiful boy!
And they asked what we were hoping to accomplish with seeing the genetics team in SLC.
And I told them I really want to know if anything else is expected to happen with Bradley.
I don't need a cure.
But I would like a diagnosis. A prognosis maybe.
 We hashed over everything that has happened to Bradley.
All the sadness.
All the pain.
These are pictures from before anything scary happened.
Beautiful boy.
 Beautiful soul.
And the geneticist in Salt Lake couldn't think of any syndrome
 that sounded like anything Bradley is exhibiting.
He said he would see us in a year if we wanted to come back.
He told us he'd take an x-ray of one of Bradley's hands.
He told us to follow up with Morris when she is better and said he was sad to learn she is sick.
And he said he is sure Bradley's health problems are related to something in his genes.
He said we could do genome sequencing.
He said everyone has genes out of place, when they are sequenced.
He said it would be hard to pin it to one that was out of sequence unless we had another child,
who had the same health problems,
 and we sequenced his genes along with Bradley's and compared them.
I thanked him and we went to have the x-ray of Bradley's left hand.
And as the x-ray tech took the picture of his tiny bones,
my heart sang with delight to see such a beautiful hand on the screen.
I asked if that was the cutest hand she had ever seen.
She chuckled and said it was.
And tonight I looked at all of my babies sleeping
and I feel so blessed to have each one of them in my life.
I really am a lucky woman.
Even if the doctors never understand why Bradley is they way he is, I DO!
He is in our family for a reason, that is so far from his diagnosis or prognosis.
We don't really need it.
I am grateful he was placed so perfectly in our family.
That he was entrusted to Me and Tom and Madeleine and Jacob and Charlotte.
That we all get him so we can learn to be better people.
More patient. More loving.
And especially more patient!

Thursday, September 13, 2012

Special Love

I've been thrust into this special needs world, that I never anticipated being apart of.
And before I was in it, I didn't get it.
I've been surprised how much my heart aches for Bradley.
How this love has overcome me; I'm not sure.
Except he's the only one who is always just out of my reach.
Not doing what I want, whenever I want him to.
I am so subject to him.
Making my heart yearn.

I honestly love all of my kids to the same degree.
But the love Bradley and I share, is so different than ANY love I have EVER had.
Not romantic. Not parental.
Special love.
Coming close to death was a sanctify experience for me.

Bradley's O2 needs have gone down!!
Tonight my head is finally feeling relief. 
He is not requiring help to breath during the day!
 I thought my sweet boy was going to die last month.
That there was no earthly future for him.
I am so grateful to still have him!
 God has really hit me hard with this kid.
Up to this point, I have never had to yield to ANYONE like this.
This love squeezes my heart so incredibly hard.
I am feeling the sun on my face again.
I am starting to have hope again.
My thoughts are thinking of his future again.
I think, I may actually get to raise him here.
Bradley, stay with Momma.
Stay close.
Please stay.
I've been pleading whispers in his ear for a year now.
I'm glad he got to stay.

Sunday, September 9, 2012

Umbrella of Faith

Wednesday is the one year anniversary for Bradley coming home from the hospital.
These last two months, have been full of memories,
of a time last year, that was SOoooOOOooo incredibly hard!
It was a storm in my life for sure.
And I had an umbrella the entire time.
And that umbrella was my faith.
Someone recently asked if I'd speak in a youth fireside, about Bradley and faith.
And I've been thinking about where my faith has come from.
Part of me would like to attribute it to my parents.
They are normal people with faith themselves.
They took me to church, the whole time I was a kid.
And they were never abusive about shoving the gospel down my throat.
They were imperfect and normal people who tried to do their best.
And they DID do a great job with their kids.
All of us six kids still have faith in a God we have never seen.
In a world where faith is being attacked and people need evidence of things before they believe,
I would like to say that I believe, because I do.
I believe in EVERYTHING The Church of Jesus Christ of Latter Day Saints claims.
I know Joseph Smith was a true prophet of God. The Book of Mormon. The Priesthood.
And I've been thinking about how I KNOW this.
And I've been thinking about the time Bradley was in Intensive Care.
Near death.
Unsure of why his body was shutting down. I WAS SURE, he was sealed to me forever.
I FELT the spirit confirm that over and over again.
And I knew we would see eachother again.
Because Tom and I had been sealed in the Temple.
Those memories of us looking at each other across the altar,
gave me so much comfort as the surgeon told us our son had a
VERY HIGH chance of bleeding to death and dying.
The spirit witnessed that we WOULD be together FOREVER, no matter what!
I read my patriartical blessing everyday that Bradley was in the hospital and
I understood that it's foresight was coming to fruition.
How would that patriarch have known that I would have trials with my child's mortality?
He couldn't have.
He was blessed by the spirit to know that.
I am not perfect. I'm very imperfect.
But I try.
I go to church.
I have faith in things I have never seen.
And I have been blessed with the spirit of comfort in my darkest hours.
None of us know the storms that lie ahead.
All we can do is work to get our umbreallas ready.
And I promise you, if you have your umbrella of faith, you will be able to weather ANY storm.

Sunday, September 2, 2012

Blind and Believing

This is the only photo I have from Bradley's Birth.
Can you tell I was supposed to lay on my back?
I was so frightened when I saw him, I could not sit down.
I was pacing so much, I started to hemorrhage and I fainted.
And after that my midwife scolded me and told me I was not to get up for 12 hours.
Tom took Bradley downstairs and fed him a bottle.
And Tom recounts that Bradley and him had eye contact for quite sometime.
And Tom understood Bradley was a strong little fella.
And Tom brought him to me later and had to tell me what a strong spirit Bradley had.

If we really believe the things we have been taught,
then we know it is not so bad that Bradley might be blind during his life.
We believe that everyone, including Bradley was there,
when all the beautiful things on this earth were made.
And Bradley HAS seen the Grand Canyon, the Pacific Ocean and Yosemite.
He has seen all the beautiful things that Heavenly Father made him.
He was there!
And now, behold, I say unto you, that these are the generations of the heaven and of the earth,
when they were created,  in the day that I, the Lord God, made the heaven and the earth,

And every plant of the field before it was in the earth, and every herb of the field before it grew.
 For I, the Lord God, created all things, of which I have spoken,
spiritually before they were naturally upon the face of the earth.
 For I, the Lord God, had not caused it to rain upon the face of the earth.
And I, the Lord God, had created all the children of men;
and not yet a man to till the ground;
 for in heaven created I them;
and there was not yet flesh upon the earth,
neither in the water, neither in the air;
 But I, the Lord God, spake,
and there went up a mist from the earth,
and watered the whole face of the ground.

And I, the Lord God, formed man from the dust of the ground,
and breathed into his nostrils the breath of life; and man became a living soul,
the first flesh upon the earth, the first man also; nevertheless, all things were before created;
but spiritually were they created and made according to my word.
Moses 3:4-7

And my feeling is Bradley did see my face at one time.
I remember lying in bed those first two weeks and we made eye contact while he nursed.
And I feel like it has been a progressive loss.
And that is okay.
We lose things sometimes in this life.
And that is why the resurrection will be so glorious!
The soul shall be restored to the body, and the body to the soul;
yea, and every limb and joint shall be restored to its body;
yea, even a hair of the head shall not be lost;
 but all things shall be restored to their proper and perfect frame.
Alma 40:23

And to quote my mamma; this is just more of his earth stuff!
The only thing that matters is his eternal stuff!!
And I KNOW his eternal stuff has already been worked out!