Holiday

 

I'm turning 31 tomorrow.

 I'm a Halloween baby.

My Mom's birthday falls on Thanksgiving some years too.

I LOVE having my birthday on a holiday.

It is so much fun!!

 

So when Charlotte was due on Christmas eve, I thought forsure she would come Christmas day.

But as you know, that did not happen.

She came 15 days after her due date and was born on January 9th.

 

So when Bradley was due on June 22nd,

 I thought it was totally possible he could come on the 4th of July.

 

But he didn't!

Instead he came on the 20th of July. 

See how my plans never really materalized?

He reminds me daily, I am not the one in control.

 

 

This morning, Charlotte kissed and hugged the kids goodbye and had a sad look on her face.

When I asked her what was wrong she said

she didn't want the kids to go because she would have no one to play with :(

 

That is an obiviously sad part about being disabled.

Play is confined.

Perhaps I should adopt another child for Charlotte.

 

And yesterday the Salesman from the vest place called me

and told me all of the wonderful things that would happen with the vest's usage.

He told me Bradley would feel so good, he would hold up his head and be able to walk.

I remember a promise like that from the helmet doctor.

I'm only into this 16 months and I'm starting to feel tired of the promises.

Skeptical a little even. 

 

 

And being sixteen months old means he's wearing a lot of clothes that Jacob played in.

And a lot of his clothes have holes, and stains from markers and food from Jacob.

When I first pulled these clothes out, the memories of Jacob and how typical he was

was overwhelming for me.

 

 

 But the more I wash the hand me downs, the more the stains are fading.

And holes in the clothes can be mended too.

And Bradley always looks prestine, because he never makes messes.

And that is definitely a silver lining.

 

 

And even though I didn't get that typical boy born on the 4th of July,
I still got a pretty neat kid.

One I would never have imagined in my life.

One who is sweet and innocent.

One who reminds me of my Heavenly Father everytime I look at him.

And I can let go of what I thought I wanted.

I just have to do it.

VIP & a GJ

 

Two weeks ago, we had dinner at Tom's brother's house.

And they have a big man cave of a shed in the back yard.

And we were out there after dinner. Roasting marshmallows in the fire pit. Talking.

Bradley had just had his phenobarbital.

And he was still eating like he always does.

And he spit up a little.

I used to be annoyed when my kids would spit up. So messy, right?
But when Bradley spits up it scares the hell out of me.

Not because he chokes or anything.

But usually because it is followed by pneumonia.

 

 

He had just finished a round of antibiotics 5 days earlier.

Antibiotics to kill bacterias in his lungs causing pneumonia.

AND THEN he threw up.

So 5 days later, he was running a fever.

And I took him into the pulmonologist.

And I told him he had thrown up.

And the pulmonologist put him back on another 10 days of antibiotics.

And this time he ordered an x-ray.

 

 

And Tom took him down to Sunrise to have it done.

And Tom said his whole right lung looked white.

 

 

And I called the GI and told him to please schedule the placement of the GJ now.

That I was tired of Bradley having pneumonia.

That Bradley has been on oxygen since May and I'm tired.

And I will do anything to have him stop getting sick.

 

 

And the GI said it would be a few weeks till he was better

and I told the GI he's not going to get better unless he gets the GJ.

And the GI agreed.

And the next day the nurse called and scheduled it in 10 days.

 

 

And today, as a formality, I took Bradley out to the pulmonolgist to have him look at the x-ray

and tell us if he thinks Bradley does in fact have aspiration pneumonia.

And the pulmo took my disc and left the room when I saw him.

And a few minutes later he came back with a nurse

and told me to leave the kids with the nurse and come into his office.

 I walked down the hall into his office. I have never been in there before.

He had leather couches and a big mahogany desk.

Nice artwork on the walls and papers and stacks of books everywhere.

He motioned to me to come behind his desk and look on his computer.

And the upper right lobe of Bradley's lung was empty, but the bottom was VERY white.

And he said that normally you can see the heart through the lungs,

but that you couldn't see it at all in this image.

And so I said "Are you sure he has pneumonia then?"

And he said he was.

 

 

 And we went back to the exam room

and suddenly Maddy called to tell me she was home from school
and he told me to answer it.

And I made sure she was alright and I told her I'd be home soon.

And I hung up and the Dr said I had very good kids, as he was looking at Bradley and Charlotte.

I asked if he thought the secretions from the bronchscope looked like aspiration.

He said they did.

And he said,
for a kid who wasn't eating anything by mouth,
and who wasn't sick,

Bradley had a lot of junk in his lungs.

And I reminded him about the swallow study and he said it didn't matter.

And I told him I would go through with the GJ placement then.

And he said he would.

 

 

He said he would order a vibrating vest for Bradley to wear to help him clear his lungs.

He said they would come to my house to measure and fit Bradley for the vest.

That it was specialty made for kids who had pneumonia.

 

And I asked him how much longer Bradley could not eat by mouth.

And I asked if it would be for the rest of his life.

And he told me no.

That he should grow out of this someday. Eventually.

And I told him that I was getting pressure from speech therapy to feed Bradley by mouth.

And he said "He's got to get better first. For now, he is NPO."

Which means nothing per orem or oral.

 

And he bent over into Bradley's stroller and patted Bradley on the chest

and said that Bradley was a VIP.  

And Bradley smiled and shook his head back and forth.

 

 

And the placement is next Friday.

We have to have it placed by x-ray, under sedation, in the hospital, 

so that they are sure they get it into the jejunum.

 

I want so badly for this to work and solve our oxygen problem.
I'm hoping it does.

 

 



Live Again

 

I've been thinking a lot about loss lately.

I have had so many people tell me they do not know how I feel.

I would tell you, you do.

It is exactly as you imagine.

Hell.

 

 

There are so many times that my mind thinks about the way things could have been.

Wondering what life would be like, if Bradley had been typical.

Food he would be eating.

Chairs he would be sitting in.

Toys he would be playing with.

Messes he would be making.

Syblings he would play with.

Things he would tell me.

 

 

 I do not pretend to understand what Mothers of children who have passed know.

I've been there.

I am there.

I am dealing with loss in my life right now.

And though Bradley's body and spirit are still here with me,

there is a hole of what he could have been all around us.

And the loss I feel is real, and deep, and could almost swallow me up sometimes.

 

 

And that is why Elder Shayne M. Bowens talk spoke so sweetly to me during conference.

You can read his entire talk here.

These words have been so helpful to me!!

 

I have learned that the bitter,

almost unbearable pain can become sweet

as you turn to your Father in Heaven and

 plead for His comfort that comes through His plan;

His Son, Jesus Christ; and His Comforter, who is the Holy Ghost.

 

I testify that because of Him, even our Savior, Jesus Christ,

those feelings of sorrow, loneliness, and despair will one day be swallowed up in a fulness of joy.

I testify that we can depend on Him and when He said:

“I will not leave you comfortless: I will come to you.

Yet a little while, and the world seeth me no more; but ye see me: because I live, ye shall live also."

And because the Savior lives, Bradley and I will live also.

We will have it ALL returned to us one day!!!

Anything Is Possible

 

I had one of my hard days today.

I'm not sure what made today, specifically hard.

I've been going over today in my mind trying to figure it out.

But nothing big or out of the ordinary happened.

Yet the waves of sadness came rolling in.

 

 

 Bradley's PT has strep throat.

So PT was canceled this morning, after I had already gotten up,

gotten ready and was about to walk out the door.

Glad they caught me before I had left the house.

So I walked the kids to school instead.

Charlotte was excited to go. So were Maddy and Jacob.

It's something we have not been able to do, because of the heat and Bradley and our schedule.

But today we were able to.

And it was nice to feel like a normal Mommy again.

 

 

 And after we got the older kids to the school,

I was enjoying my normal-mommy-ness so much,
 I offered to take Charlotte and Bradley to the park.

Of course Charlotte was ecstatic.

Bradley didn't say much.

 

 

When we got to the park, it was empty.

I guess 8:50am is not a normal time mommies take kids to the park.

I remember being a normal Mommy and I used to go at 10am.

 

 

So we walked around a bit.

Charlotte rode with Bradley in his stroller, nearly squishing him.

And eventually people started coming to the park. Finally!! 

 

 

Then I was caught off guard by several people who asked me what is wrong with my baby.

I do not think it is impolite of people to ask.

I understand what they are asking.

They see tubes.

They see a tiny child.

It's curious.

But their questions, just got to me today.

Like salt on a wound.

I was already walking around the park filled with memories of what

 I thought my life was going to be like at this point.

Saddened by the fact that Bradley still cannot sit in the baby swings.

Terrified of the future.

Glad he is atleast here with us still.

Hoping this isn't my last trip to the park with him.

And then those questions!!

But I held it together.

Told them that he gets food and liquids in his lungs when he eats.

So he has a tube to feed him, and oxygen to help his lungs recover.

 

 

 

And one lady probed deeper and asked if he would grow out of it someday.

And I told her, anything is possible.

And she liked that answer.

It gave her hope.

I think we all are searching for hope.

And that is what is so appealing about Bradley for strangers.

It is apparent he continues on even with trials.

There is hope all around him.

 

 

He is a miracle.

MY tiny miracle.

And now I do know that anything is possible.

 We can only go up from here, right?

 

 

I still believe in hope.

Help to Raise a Family

 

Yesterday we went to Winco to get some food storage stuff.

We have not been food storage shopping since before

Bradley was born and my grocery bill was showing it.

Convenience foods are expensive and so bad for our bodies,

but you do what you gotta do,

and I've not really had time to cook between appointments, hospital stays, and bolus feeding Bradley.

And so in an effort to lower the grocery bill, I'm going back to good ole' cooking from scratch!!

I think I'm ready for it again.

 I have missed good food.

 

As we were nearing the end of our adventure,

(and it is an adventure to be in a busy store on a

Saturday with three walking kids and one in a stroller with tubes hanging off,

whilst packing a boat-load of cans in your shopping cart)

I caught notice of the sweetest old couple who was pushing a middle aged disabled child.

She looked like she could have a syndrome of some sort.

Definitely disabled and in a wheel chair.

And her Momma's arms were incredibly fit and toned for her age.

They all looked very happy.

Not nearly as stressed as us.

Old Dad was pushing the cart full of groceries.

The disabled girl sat happily in her chair.

Big lips and thin hair.

Small head too.

And something about her reminded me of my sweet boy.

So innocent! So happy!

 

 

For the remainder of the shopping adventure,

 we kept passing them in the aisles and I could not help but look.

I kept trying to figure out if I could tell what she had.

She could have had Downs Syndrome, but I wasn't sure.

Maybe Microcephaly, although not severe.

Maybe just low on the charts for head size, like Bradley.

 

Tom caught my eyes and gave me a 'stop staring' look and I realized I was being a bit rude.

And I wondered why they were not looking at my special child,

although right now he still just looks like a baby with lots of tubes.

And as we were leaving, she caught glimpse of me, and waved to me.
And I felt like I have known her for a very long time.

 

And I've been thinking about her all night.

And I've been thinking about us and our future, if Bradley lives a long time.

And I keep thinking about his baby blessing and a line from it,

 when my Mother, who was sitting next to me, shot me a look of shock.

Tom said that Bradley would grow up and help to raise a family.

 

At the time I had hopes that he would raise a family of his own someday.

But I'm not so sure of that now.

 

At this point I'm envisioning Bradley being middle aged and disabled,

and Tom and I helping him the remainder of his life.

And when my daughters have babies and I go to stay with them,

I think I will be bringing along Uncle Bradley.

And all the kids and their kids will know Uncle Bradley and will help him too.

And that is how Bradley will help to raise a family.

He will be raising all of us around him.

 

 

I am grateful for my glimpse of the future last night.

Grateful God is helping to prepare my mind.



The Fire

 

There are so many beautiful facets in my life right now.

A child who has taught me to love MY life.

 

 

An expanding crafting business.

My ability to keep up with and understand doctors who are crazy.
My ability to manage all aspects of Bradley's care.

To balance my schedule with appointments and therapies.

 

 

Four children who are all in different places, going in different directions.

I joke that when we get to the store Charlotte and Jacob split in different directions.

 

 

But literally and figuratively they all do their own things.

And I love watching that!

 

 

Tom and I have decided that he's going to quit his second job

because of the money I'm making with my flowers.

 

 I know that this gift/job/ability to make money has come from God.

He has given me so much!

 

 

 

When Bradley came to our family, I WAS SO flippin' SCARED!

But slowly, I have gained a confidence that I have never, ever had before.

Something that I had seen in others who were more secure with themselves,

but nothing I ever possessed.

I have it now.

I am secure with who I am.

When your child nearly dies, you don't care much about anything else around you.

You no longer care about what others think, when you are at risk of losing everything.

You are so raw. So exposed.

It changed me.

 

 

 When this life is over for me, and I see Bradley in all of his glory,

I will thank him for coming to he body that he struggles in daily.

I have done so much to keep him alive.

But he has ignited my spirit and has fostered talents in me that I never imagined for myself.

 

 

 

I am lucky.

 

 

The fire is fading.

And diamonds are being left.

IF I had known, what I know now, back when the doctors started telling me he was special,
I would have never prayed and asked Heavenly Father to change it.

There is no growth without the challenge. Without the fire.
I'm grateful, I've been burned.
I'm stronger.
More like the diamond God intended to make when he created me.
 



Cindy's Daughter with CF

 

Sometimes, at night, I unhook Bradley from all of his tubes and pull him into bed with me.

The other night we fell asleep cuddling this way.

And at about 4am I was awakened by a blood curdling scream.

My heart skipped a beat as I jumped to me feet and turned on the lamp.

Bradley was shrieking at the top of his lungs.

Half asleep still, he had giant tears on his cheeks.

I held him and told him Mommy was here.

He calmed and quietly cooed and regained his normal composure.

I realized he must have had a nightmare.

About what, I don't know.

But I'm sure there are nightmares in some of his memories.

Times when tubes and wires came from all parts of his body.

And needles were pushed into his spine to obtain fluids for testing.

I'm sure he has nightmares.

And he was awake for a bit and acted like he wanted to know I was there with him for sure.

He kept rolling towards me, almost pushing me off the bed.

 

 

 And I and thought about the scary nights he spent at the hospital.

I know he was tiny, but I'm sure he remembers it.

And I thought about my sister who had meningitis and a spinal tap at three months

and how she used to cry in the middle of the night too.

  

Yesterday we saw the pulmonologist.

He is still hearing a rattling in Bradley's right lung, which is consistent with aspiration.

We just finished a round of clindamycin. He told us to keep up the albuterol and the budesonide.

He told me to continue chest PT in hopes of loosening the junk in his lungs.

I showed him what I was doing and he said I wasn't doing it hard enough.

He said he'd send in the nurse who was also an RT

and she would show me the correct percussive frequency.

When we were done, Cynthia came in and she showed me how to tap Bradley.

And she gave me a few tips.

And we started talking about her daughter who
had cystic fibrosis and who she had cared for for 38 years. 

 The first time I had met Cynthia, she was putting Bradley on oxygen
and loading him in my car for his first stay at the hospital with RSV.

And as she was walking us to the car, last October,

she told me her daughter had passed after a lung transplant.

 

And yesterday she went deeper into the story about her daughter.

She told me that her daughter was very tiny at

18 months and nobody knew what was wrong with her.

And she was a nurse by profession and she pulled out her medical books

and mulled over the pages searching out her symptoms.

After a lot of research, she took her daughter to the doctor

and told the doctor she thought her daughter had cystic fibrosis.

The doctor said it wasn't possible and ran a test and sure enough, she did.

She had diagnosised her daughter.

And they started treatments on her and she thrived for someone with CF.

She even became an overachiever. Cheerleader. Class President. Validictorian.

And when she was in high school

 she would wake every morning at 5am to start her treatments so she could breath.

 

But before she died, she was intubated for her comfort.

She had undergone a lung transplant and her body rejected the donor lungs.

And to help her breath, they put in a breathing tube.

And Cindy said she called her the last week she was alive,
because H1N1 was in the hospitals and she had a cold and the nurses said she couldn't come in.

But she called her daughter and the nurses held the phone to her ear and Cindy talked to her.

And Cindy said her daughter could not speak because of the tube in her throat,
but she was comforted knowing her mother was there.

 

And I started crying and told Cindy she should write a book.

And she said her daughter already had.

And that she had the money to publish it now and she needed to.

 

And I walked out of the appointment pushing my baby,

thinking about Cindy's and everything that they went through together.

And everything Bradley and I have gone through and how much more is to come.

I could write a book too.

I am.

 

There is so much hope when you create a life. When you have a baby.

 And when you are told they have a disease or a disability, it can be devastating.

But as time has gone on, I have realized living with a disease can also be inspiring.

It can remind others that there is a God in Heaven.

Remind all of us that life is precious.

And show others that the human spirit is VERY strong!

I am grateful for my disabled and diseased son.
He is my hero.
He is my heart.