Blindness

 

As Bradley's one year appointment was wrapping up last month,

 the Pediatrician mentioned a syndrome that he suddenly thought of.

One that had mottling in the retina and progressive blindness.

He asked if the opthamologist had ever seen mottling.

I didn't recall.

He said, "Get an appointment. Have him check."

So I called and I got in a month later.

 

 

And yesterday was that appointment.

I have chased so many syndromes, that have resulted in nothing.

And as I was driving to the appointment, I was thinking the same thing would happen again.

No answers.

 

 

And he took us back.

And he saw Bradley's oxygen and tube from his stomach.

And I said I was having a hard time keeping his glasses from fogging up.

And the opthamologist didn't scold me like I thought he would for not keeping on the glasses.

Instead he waved some of his toys in front of Bradley's face and saw what I have been seeing.

NOTHING!

 

 

And he asked the same questions he always does.

And I told him Bradley doesn't look at much. But that he responds to sounds.

And I told him I was really there to talk about mottling in the retina.

And I told him the name of the syndrome.

And the opthamologist turned away from me and faced his computer to try and look up the syndrome.

The opthamoligist confessed he had read about this syndrome only once.

He said he has never seen a child with it.

He said if Bradley had this,

he would probably be the only patient with this syndrome,
he would ever see in his career.

 

 

He could not find the syndrome on the database

he normal refers to and he remarked again on how rare it is.

So he used plain old google and he looked at the pictures of retinas referenced to with this syndrome.

He flipped back in Bradley's chart, to previous visits

and showed me that he had noted mottling before.

But he wanted to look again.

So we dilated Bradley's eyes.

 

 

And the exam commenced.

And he saw even more mottling this time.

A lot more.

More pronounced.

And he noted that Bradley didn't mind the exam light shining in his dilated eyes.

And he turned up the light and shone it directly in one of Bradley eyes and Bradley didn't even blink!

 

And he said that is a sign of VERY poor vision.

And I said, "Like blindness?"

And he said "YES!"
And I said that Bradley's optometrist has diagnosed Bradley with cortical blindness.

And he said he didn't think it was cortical. That it was a structural thing.

Not from damage. But from poor formation.

And he reminded me of Bradley's poor foveal depression

that he had seen in the NICU when Bradley was tiny.

The poor foveal depression, Bradley still has.

 

 

 

And I said "So you do think he's blind?"

And he was quiet.

And I said, "You have got to tell the geneticist this! I need a paper saying that!"
And he said he would send us one.

 

 

This news is not surprising to me at ALL!

It actually explains A LOT!

And I am HAPPY about it.

 

Because all his developmental delay has, up to this point, been blamed on his IQ.

And I've never thought Bradley was unintelligent.

In fact, I've thought the opposite!

AND to blame EVERYTHING on his tiny brain is very hard on me.

Because brains either fix, OR they do not!

 

It's horrible to have health problems.

But to think your child has a slow brain is hard too.

And maybe he still does, which explains the huge lapse in development now.

 

I do not worry about the things in this life that Bradley will "miss seeing".

WHO CARES!!

At this point, I'm grateful he is still alive!!!

If you've been following this story at all, I think you'll understand that.

 



The Unexpected Check

 

I do not know the future. No one does.

But with Bradley's conditions, I've got to live life to the fullest, RIGHT NOW!

And today I got an unexpected refund check in the mail.

And I told the kids I would take them somewhere.

And Jacob wanted to go to Build-A-Bear.

 



 

Mind you, two years ago, as I packed a bag of stuffed animals for the Goodwill,

I vowed I would never buy over-priced stuffed animals again.

 

But tonight, I didn't care about the money.

I needed to take Bradley!

 



 

And Bradley picked out his very first Build-A-Bear tonight.

 



 

And the kids helped him stuff it.

 



 

And love it.

 



 

And brush it.

 



 

 

 

 

 And dress it.
 



 

 



 

And we made memories that can never EVER be taken from us!

 



Memories I would have paid a million dollars for!

 

 

I know that in the eternities, the things that we will do together,

will be way better than this silly trip for over-priced stuffed animals!

 

 

But I think it is interesting that I was given a way to do this little trip tonight.

And I'm constantly being helped along this road I am treading.

I have a constant, strong, loving, all knowing arm around me.

And I'm being told how to do this,

because I don't know how to do this!!

BUT I KNOW I HAVE TO MAKE THE MEMORIES!!

Even if I cry all the way home.

 

Grateful for that check today.

Grateful for the help.

Grateful for the memories.

 

 



Bright Eyes

 

If you ask my Dad, he will tell you how much I truly HATE roller coasters.

I used to cry and cry when we'd go to Disneyland because I knew that Space Mountain was coming.

I'm a wimp sometimes.

And being a Mother, has only heightened my fear of all things fast and high.

I'm not a fan.

 



And this roller coaster never stops.

It seems to go on and on.

 

 

Last Saturday night at 2am, Bradley's pulse ox machine started alarming.

I uncovered him and noticed he was shaking horribly.

I touched his skin, which was icy.

I picked him up and pulled him into bed with me.

I covered him up and started rubbing his cold legs, trying to warm them.

He started making noises that I make when I am cold.
Shivering lips.
Shaking.

And suddenly his numbers plummeted.

He was in the 60s.

And I turned up his oxygen and turned on the lights and started packing my hospital bag.

I went down to change the laundry and suddenly I heard Tom calling my name.

"MARY! COME LOOK AT BRADLEY!!"

I ran up the stairs, and peered over Tom's shoulder and noticed Bradley's eyes and lip twitching.

I dialed 911.

They had to transfer me to Henderson.

It took FOREVER to get someone on the line

and when she finally was there, he had stopped doing it and was in the 90s

I told her not to send an ambulance, that we would go to the hospital on our own.

And it was gone.

And he was breathing normally again.

And I laid down on the bed and realized how tired I was. I had only slept an hour. 

And I told Tom we would go in the morning.

 



 

At 9am Tom's Mom came to be with the big kids.

And Tom and I took that drive down to Sunrise again.

When we got there it was quiet and they let us right back to get him on their oxygen and off our tank.

And he had a fever and they gave him more Tylenol.

And they started trying to get blood, which they never got.

And they took an x-ray.

And we waited for a flight nurse to come try to get the blood.

And she came and even she could not get the blood.

And after her second try the doctor came in and said he had pneumonia.

And I said "WHAT!?!?"

 





 

And she said she compared the x-rays from the last stay and he had infiltrates.

And I told her the pulmo had just suctioned his lungs in a scope two weeks ago.

And I told her, no one was sick. No one had congestion.

And I told her he hadn't eaten by mouth for 6 weeks!

And then I remembered the GI had said something about aspirating reflux in the swallow study

and I realized he said we could feed him slower if we had problems controlling that.

And I called the GI when she left and told him I thought we were indeed having problems

controlling the reflux aspiration and that I would take the pump back.  

And the pulmonolgist said that the cultures

of the secretions from his bronchoscope show food aspiration.

And that he thinks Bradley is aspirating reflux too.

And so I got the pump back yesterday.

And I'm feeding him VERY slowly all day long,

so that his tummy is never full and he never has the chance to reflux.
And he's on antibiotics and steroids for the pneumonia.
 



 

And today his eyes are the brightest I have EVER seen them!

They are the most beautiful eyes I have ever seen.

And he sat on my lap and tried to pull away from me all day.

And he's been pulling off his cannula today too.

 

 

My hopes have been renewed today.

I have hope that he WILL DO the things in this life
that I intended for him to do when I decided to create him.

 

Thank you God, for today.

It was SO sweet.

 

Those high scary parts are well worth the calm sweet parts,

full of his beautiful bright eyes.

 

Good Days and Bad Days

Some days are so amazingly good.

He's alert.

He holds up his head.

He responds to therapy.

He holds himself in positions.

And some are like today.

Floppy.

In an effort to get out of the house and do something with the older kids,
we have taken up swimming at the indoor pool.

So nice!

Air conditioned!
You don't need sunblock!

Nice ledge for the toddler to swim on.

I can park the stroller by the pool when Bradley gets tired and watch him.

But we get looks.

Lots of looks from strangers, who I'm sure are wondering why in the heck I have a baby on oxygen.

And I justify it by thinking; "It's therapy."

But also THIS is Bradley's life and IF he is going to have one,

we have to LET him LIVE it to the fullest he can.

Disabilities and all.

And I got a handicapped placard!!! YAY!

I've been unloading and loading that stroller for almost a year now, and I'm tired. Whew!

And today amidst the swimming, Bradley kept having seizures. Some tiny. One big.

And it scares me, but we are at a point where there is nothing that can be done.
 I guess we could try other anti-seizure meds with the risk of them not working,

 and it could possibly mess things up for him, and then where would we be?
The hospital.

So we just deal. This is our normal.

And with the congestion finally gone
(because of the holding of the mouth feeding)

I have upped his therapies.

And he is getting a second session each week now.

Cranial Sacral Stimulation.

I understand, some think it's hokey; but I am at the point where I will try anything!!

And this week when we got to our second appointment,
there was a little girl being carried in by her Mother.
I have seen her before. She's the prettiest girl. About the age of Maddy.
Long blond hair and blue eyes. Always dressed beautifully too.
And her mother drives a Mercedes Benz.
And she put her on the chair next to me and then she went back out to the car
and came back with the girl's walker and leg braces.
And I could tell by the look in the girl's eye's, that she was having a hard day
and she couldn't use her equipment.
I could also tell by how her Momma was acting.
They were both having a hard day.

And when Bradley has a bad day, I can hardly move.
He paralyzes me.
I long for the end of hard days.

Sometimes I wish he could be relieved of this body.

The poor baby.

But I know what that really means, and I would miss him terribly.

And so I just continue on wondering how long this will go on.

On Wednesday, Tom came and showed me the obituary of a girl we had been in institute with.
She had been in a wheelchair and had sisters close to her age.
And I remember her, although I'm not sure we ever talked.
And we read her obituary and realized she was two days older than Tom.
And she had had a rare disease that had affected her brain
and this was eventually what ended her life.
And I have been thinking about her all week.
Remembering how she was. That she would have bad days too.

I've been thinking about how her Mom feels.
How she feels.
How glorious to be relieved of that body!
And 34 years of this? I don't know if I can do that!
34 years is a LONG time!

And I'm thinking about how glorious the resurrection will be for her and Bradley.
To finally use their legs in their fully intended, functioning use.
And how they will be unrecognizable to those of us who didn't see past their bad days.

I know Bradley will look different than he does now.
What a day that will be!
That WILL  BE an good day.
No.
It will be a fabulous one!!



Heaven's Breath

Last year, at this time, I was stroking my babies head who lay in an incubator, being intubated.

He was fighting to live.

And I helplessly sat by his side.

And Tom and I would take turns at his bedside.

Each of us stroking his hair. Each of our eyes filled with tears.

And I could do nothing for him, but be near.

And it was a confusing time for both Tom and I.

We talk about it now and both remember being very unsure of what was really happening to Bradley.

And the nurses and doctors kept saying our baby was sick.

And the word 'sick' shocked us.

He had tubes in all sorts of places and they were using words I had never heard before.

 And it is kinda of a sad anniversary, but one that marks the change of so many things.

Yesterday we returned to Sunrise to have the pulmonologist look at his throat and the muscles inside.

To see if his need for O2 was related to sagging muscles.

And the pulmonolgist said his larynx looks great.

That he can see no reason, structurally, why Bradley cannot respirate on his own.

And I asked why he needed oxygen then.

And the pulmonologist said it maybe because of something in his brain.

I have heard that answer too many times to count!

I'm very grateful his body has a lot of good parts!

And I wish there was a way I could guarantee a fix for his brain.

And that we understood WHY it is malfunctioning.

How do I fix his brain to tell his body to breath?

There is no therapy for this!

And it is consistent with what the neurologist is telling us.

His breaths are from heaven right now.

And God is in total control of his life.

AND I still feel VERY helpless!

AND I HAVE TO HAVE GODS HELP THROUGH THIS TIME.

THERE IS NO OTHER WAY.

There is no artificial brain they can give him.

And an artificial airway will do him no good.

I'm still not sure how I feel about this news.

But I'm grateful for the breath God grants us still.


Companions

Today was Bradley's third swallow study.

When I got there, a very helpful employee filled out the admitting paperwork for us.

She printed off his labels and orders and set me in the waiting room to wait for the x-ray tech.

Bradley was still asleep.

Looking so peaceful and content.

And I scanned over the paperwork, thinking about how many times we've waited for procedures.

Hoping all would go well.

How many times Bradley and I have left the house early, fasting.

Driven down to the hospital or diagnostic center.

And waited.

How I'm still waiting.

And waiting.

For a diagnosis. A test result.

What a trial this has been.

And I got to a part of the paper work that said "Spouse/Next of Kin/ Companion"
And underneath it was my name, indicating I was that person. 

And I looked into his stroller and thought about our relationship.

Being companions.

I feel eternally bound to Bradley.

That he did come to be my helper as much as I am his.
More than just a Mother and Son.

My Buddy in this life, who goes through the trenches with me.

Feeling pains together.

Growing together.

Understanding everything about each other.
My companion.

And they called us back and the four swallows Bradley did for them were not aspirated.

But when they moved to the upper GI, they saw that his reflux was.

And that makes sense, because I feel like he aspirates after he has been eating for a bit.

And I left a little flustered. Knowing that liquids make him sick.

And I was exhausted this afternoon and I laid down for a nap.

And I had a dream about my childhood home.

I saw it exactly as it was.

I walked outside to the yard and walked along the chicken coops.

And I heard the trees and felt the warm dessert winds.
I knew my Mother was there.

I never saw her, but I knew she was there.

And I felt safe again.

And not scared.

And I felt rest.

And I woke up and gathered Bradley in my arms and I kissed him.

And I realized I am HIS Mommy.

And he feels that same peace with me, even if he cannot see me.

I make him feel safe and not scared.

Tonight I am grateful to God for our realtionships with eachother.

That I can be a Mother, and a companion to Bradley.
I am very lucky I get to go through crap with him.
And I hope he drags me to heaven behind him.

I'm sure he is already going.