Fragile

The best part of the summer is the Sluder Family Reunion.

We missed it last year because we were waiting on someone to make his way into the world.

 This year however, we were bound and determined to make it.

Even if we were released from the hospital a day before the drive.

And we stopped in St. George to see Tom's Grandmother whom the 

Doctors had said they could do no more for in the hospital.

She was released to hospice care.

She was sent home to her daughter's house in St. George and we stopped on

our way up to see her for what we thought could be our last time.

And when we came into the room, I noticed her eyes and how dark they looked.

I noticed that she seemed to look through us.

And she said "Tom you came home!"

She would not eat or drink.

She would purse her lips when it was offered.

And she did infact look like she would not make it much longer.

And she gazed at our kids the entire time.

And as Tom hugged her goodbye,

I could not help to think this was the last time we would see her for a while.

Goodbyes make me cry and so I never said it.

And she did pass on the 26th of June. 

Grandpa had passed on the 26th of June last year.

They had been married more than 60 years. 

And Tom told me later that the look in Grandma's eyes, he has seen before in Bradley's.

I'm grateful he is still here.

That he can roll in his Grandma's grass and smell his Grandma's barn.

That he can sit on the bridge over Grandma's creek and hang his feet over the edge.

That he can hear Aunt Jennifer's songs.

And smell the hamburgers cooking.

And hear the candy cannon boom.

And that we can give him tastes of ice cream and whipped cream.

And that Aunt Beth can hold and squeeze him and tell him how much she loves him.

I am grateful for everyday I have with him.

And that he has opened my eyes to the little things.

And that he reminds me how fragile life is, everyday.



Sleepy

I think when Bradley was created the stars alligned and gave us a truly unique child.

A "mystery" as his pediatrician likes to call him.

He likes to be mysterious, I guess.

It keeps us on our toes too.

Yesterday Bradley slept all day. I kept waiting for him to wake up.

He had fallen asleep at midnight and we had an appointment at 9am.

It seemed strange that he was not up by 9am to eat.

But he had been sick and in the hospital and that takes some recovery time.

And the g-tube makes feeding a sleeping child very easy.

Bradley doesn't skip meals!

And so at 1pm when he still would not wake up,

I took a pulse ox and saw that his numbers were a little low.

I turned up the oxygen.

And I took his blood sugars and they were normal.

And those are the only two things I can check at home.

So I called Tom and told him.

I called him ever hour Bradley did not wake.

And at 4pm Tom drove home to watch the big kids.

The chick at the window at Sunrise told us to come in as soon as she saw me.

She remembered me from the last two times.

And the ER nurse took his pulse ox and vitals and started to walk us back to a room

 and decided to take us to the trauma bay instead.

And this is Bradley's third time being in the trauma bay in the ER.

And she could not wake him.

He would stir and cry and fall right back asleep.

And they took all the tests they usually take.

And they admitted him so they could watch him.

He refused to wake up.

I would watch nurses as they would make eye contact with me.

They would look at me twice and say, "You were just here!"

When we got upstairs we had the same nurse we had three days ago.

She carried Bradley from the gurney to the bed and remarked at how out of it he was.

The test results started coming back.

Everything was normal.

Sometimes I fantasize about abnormal test results.

A team of docs coming to deliver the news;

Me bursting into tears-

But it never happens.

At 6am this morning he suddenly woke up.

And he was HUNGRY!

He was acting like his normal self.

Like nothing had happened.

And more results came back. All normal.

And they let us go tonight.

I don't know what it was.

Hopefully a growth spurt.

Although my other kids have never had 30 hour growth spurts.

I've become what I feared I would become when Bradley was in the NICU.

A HOSPITAL MOM!

No makeup, messy hair, thick socks, comfy shoes, sweats and a t-shirt.

I look like I live there.

And I have a bag packed and ready to go always.

And the nurses call me "Momma", like they have the right to.

And I'm becoming a medical supplies consumer.

And I felt like a hoarder saving all the pulse/ox probes the nurses were throwing away.

And I mentioned that I needed some alchol wipes for my home accu-checker,

And my nurse brought me some, and it made my day!

I'm very glad he woke up and I got to see his pretty eyes today.

And I'm even happier to be home.

My universe will never be the same because of Bradley.

I'm glad he is here with me.

Lucky

This is my rock.

Handsome and helpful.

One of the best things Tom tells me is "It's really not that bad."

He is a great example of happiness himself.

He is simply just happy.

And there have been times I have been very sad.

And Tom has said "It's really not that bad."

And he has made me realize, it really is not.

I encounter people who think I should be crying all the time.
Doctors, nurses, peers with and without special needs children.
And things are hard sometimes.

Bradley is a little extra work.

True.

But he is such a happy kid.

I think he got Tom's disposition.

I am lucky.

And everyday I count ourselves lucky not to have more to manage.

And Bradley has acquired more conditions as he has aged, that is true.

And he might acquire more conditions still.

But it can ALWAYS be worse, right?

Even if Bradley never walks and I'm hoisting him into a bathtub when he is 30,

I'm sure I will still have things to be grateful for then.

I have been so blessed. And I just want to say that.
Even with everything I have been through,

I still consider myself lucky.

♥

Together, Forever

Unity can be born in challenges.

And Bradley has shown me that.
I've yet to have a child leave; until Bradley.
And when he returns, it is so sweet!

And all of us cry when he is gone.
We all understand that feeling.

And loss is part of this life.

 And that makes being together forever an even greater promise.

Heavenly Father created our hearts to yearn for others.

And he also takes away from us sometimes too.

And the most broken heart, can someday beat the hardest.

Through his help.

Through helping others.

It is a most excellent and beautiful plan.

So thankful

that I know

we can be

 TOGETHER, FOREVER.

Familiar

On Wednesday Bradley was very, very fussy.

He'd cry even when I would hold him.

 So I propped him up;

which is becoming harder to do.

And he slept most of the day.

But he woke from his afternoon nap screaming.

And I went to pick him up to feed him and noticed a bloody watery goo coming from his ears.

I thought it was an ear infection (which explained the fussyness)

and when Tom walked through the door at 6pm,

I told him I was going to Sunrise, again.

When we got into the ER, there was a huge crowd.

I walked to the triage window and told the nurse my baby had an ear infection.

She looked through the window, into the stroller to see Bradley and saw his oxygen.

She asked if he was on oxygen at home.

I told her he was and she took us right back.

Bradley has NEVER waited in the ER waiting room. Ever.

And they took his pulse ox and the best the nurse could get was 78.

And they took us to a room.

And I told them I was here for an ear infection.

And they told me the low oxygen was a bigger problem.

While two nurses were trying to get the IV,
a familiar voice came from behind the curtain, entering the room. 

The curtain had been drawn to make the room darker for the vein light.

And I knew the voice the moment I heard it.

It was the nurse who had admitted Bradley the very first time he went to Sunrise.

And I told her I remembered her.

And she said I looked familiar.

And I told her the story.

And she suddenly remembered us and started finishing my sentences.

And she laughed and said Bradley was HUGE!

 I told her it's because he has a g-tube now.

And she told the other nurses that she was assigned to only him, because he was so critical.

I hadn't known that.

And I told her he went upstairs and almost died later that week.

And I told her about all of his conditions now.

And I told her about our lack of diagnosis.

And SHE got the IV in Bradley after the two other nurses had tried.

And as she was leaving she said that I was a good momma and that I had a special kid.

She said that when mommas of special kids bring them in,

 it's usually because the momma knows there is something wrong.

And I thought to myself, "that's because I hate to bring him here and I only come when I'm desperate"

We were admitted.

And they have started fluids, steriods, antibiotics and breathing treatments.

And the RSV is getting better.

He is back to the amount of oxygen he was on when he was healthy.

But his blood sugars are VERY high and he is requiring insulin to controll them.

And I hate leaving him there when he is having problems.

Getting on that elevator is very emotional for me.

But tonight was Tom's night.

And I needed to see my big kids.

And I'm feeling a tickle in my throat like it's my turn to be sick.

I'm going to go to bed to dream about Bradley and having him home with us.

The heart break I have felt with this child

 has been more heart break than I have ever felt in my entire life.

And sometimes it's like my soul is burning for him.

And I wonder why that is.

And I wonder if others feel it too.

Especially when they call him special.

It is like he has always been here with us.

And I know he always will be.

No matter what.

Long Overdue

 22 years ago today, I came home from the last day of school to a Mother who was in labor.

She had been due on Mother's Day, May 13th 1990,

and we had been waiting a long time for my sibling to come.

And he finally made his way into the world a whole month later.

I still remember her and my Dad hurrying down the hall before another contraction hit.

And when you go a month overdue, everyone tells you you were off on your dates.

But I WAS pregnant with Bradley from September 15th until July 20th.

And it did not seem weird or dangerous to me. My Mother had done the same thing.

And this time last year I was trying to stay as occupied as possible.

I was due with Bradley on June 22. A year ago today was 10 days till my due date.

And I was expecting to at least go 15 days overdue, like I had with Charlotte.

Maybe more.

And when I made it to the 15th day my Mom called.

She wanted to talk about how I was feeling.

And I told her if she could do it, so could I.

And she reassured me that everything would be fine with my baby

and that in 21 years I'd be okay with being so long overdue.

And I hung-up the phone and I hoped for a boy, like my Mother had had.

And I did have a boy, 14 days later.

And he was not what any of us were expecting.

And looking back on the things I was worried about this time last year, makes me crazy.

Every time I get on Facebook someone is posting a picture of a baby who was born after Bradley.

And they usually are standing, crawling or sitting, AND putting something in their mouths.

And I feel sad that I've been taking pictures of Bradley laying on the ground for a year now.

The only things that change in my photos are helmets, oxygen tubes, or g-tubes.

But I love him still the same. Maybe more actually. 

I have spent so many hours looking into his eyes trying to understand him.

It's surprising how much I've bonded with him.

Charlotte asked me one day, last week, why babies have g-tubes.

I told her most babies don't.

That her Bradley, has one, because he is so special.

And Charlotte smirked and said,

"HE IS!"

Dusky

This morning, Bradley woke up crying at 5am. He is not normally a fussy baby.

And I looked over in his crib and heard that he was even more congested than yesterday.

And I decided to use the nebulizer and give him a breathing treatment.

And he sounded like he was choking on snot.

And I suctioned his nose and mouth.

And he looked kinda dusky, like last month.

So I turned up his oxygen.

 And he continued to look grey. And I almost called the ambulance.

And we called Tom's mom to come watch the big kids.

And I drove down to Sunrise.

 And I knew he was sick again. It has been only 35 days since the last time.

And sunrise swabbed him for RSV and influenza.

And he is RSV positive again!

And the doctor said we'd turn his oxygen up and send us home.

And I was very happy to be an established oxygen patient already.

And I told him I was worried that Bradley might have a seizure.

And the doc said if he did, the ER is always open.

And I asked if it was normal to see RSV in June.

And the doctor said kids like Bradley get RSV year round.

And as we checked out with billing, a young Saturday night party go-er was there checking out too.

And she said, "AWE is your baby sick?"

And I said "Yes."

And she said "But he's getting better, right?"

And I don't know how to answer that question.

So I didn't say much.

And she wished us luck as we left, and told me to take good care of him.

And the billing lady told her that I was taking good care of him.
The billing lady saw how much we owe sunrise.
And yet she could tell he was well taken care of.

And he has been very fussy today.

RSV is mean.

And I'm watching for seizures.

Seizures are mean too.

I'm sick of being sick.

The Candle

Ye are the light of the world. A city that is set on a hill cannot be hid.

Neither do men light a candle, and put it under a bushel,

but on a candle stick; and it giveth light unto all that are in the house.

Let your light so shine before men,

that they may see your good works and glorify your Father in Heaven. 

Matthew 5:14-16

 This blog is not my way of reaching out to people for help.

It's a journal of my feelings.

And I continue to write, for the world to see,

 because I know Bradley has a purpose greater than his body allows him.

And this is how his good works can be seen.  

And no one will know about it, if I do not tell his story.

And I do not write for attention, or sympathy, or money.

That has never been my goal.

 My goal is to help Bradley bring others closer to their Heavenly Father.

 I know he is a missionary of God.

And my stories are true.

And I stand by everything I have ever written about my life and Bradley's.

And people who criticize how I brought him into this world are very uneducated.

He has congenital health problems and NOTHING I do will EVER cure him.

Being born in a hospital. Breast milk. Going to the Doctor everyday.

None of those things will ever change the shell Bradley came to.

And I cannot put Bradley's WHOLE medical history on here.

I have three doctors appointments a week.

His charts at each of those physicians are VERY thick.

And this is MY place for MY feelings, not his entire medical history.

How heartless of some to criticize what I am doing or have done.

Every night I worry that Bradley will not wake in the morning.

That he will have a seizure and be hospitalized at any moment.

It is a frightening life, I am currently living.

And feeling like I need to defend my choices is not something I have time for, really.

And I will never stop telling our story.

I will always boldly tell it.

I will ALWAYS help Bradley in his mission on the earth.

He was born with glory all around him.

His light shines.

 I have to set him on the hill, so he can be that light to the others around me.

It's my duty to my Heavenly Father who has given me so much.