Hope and the Will to Live

The hospice nurse was here today.

 He's newer to the company.

New to hospice care.

He told me while he checked Bradley today, that he had his very first baby pass.

He said she was a little girl.

 He had only first met her three weeks ago.

He said you could hear her breath in the other room.

Her airway was very constricted.

She only was filling the top 20% of her lung capacity.

He said she would definitely get a tracheotomy if her Mommy had wanted it.

But her Mommy had chosen hospice instead.

 

 

And on Thursday her Mommy called him out to the house because she was worried about her baby.

And when he got there he could tell she was getting close to passing.

She had the look.

They called Daddy to come home.

And he came home and wanted to take her to the hospital and put her on a machine.

And after two hours of talking, Dad realized he didn't want to.

And she passed on Friday night.

 

 

 I told him I hope Tom and I can stick to the decisions we have made.

That we've priced the funeral. And I've picked where I'm going to bury him.

 

And the nurse said that I've gotten to the 5th stage of acceptance then.

And I started to cry and told him, today I was feeling at the 2nd stage.

The mad stage.

I'm still mad Bradley has to do this.

And he said it was okay to go backward in the stages.

 As long as I've been to the acceptance stage, once before.

 

And I said that I still have hope for Bradley.

That I can see him being a 30 year old man and walking around.

And the nurse gave me a funny look, and we both laughed as he said, "He's not going to walk!"

 

 

And Bradley has been grinding his teeth this week.

And I've wondered why he was doing it.

And his arms and legs seem weaker lately too.

I think he is feeling low on energy.

 

 

And I realized this week, Bradley is fighting what his body is trying to do.

Sometimes I think I see him fighting off the seizures too.

 

He wants to be here with us.
His will to live is great.

And when he finally lets that go, he will go too.

He will stop crying on the nights he cannot breath. 

And he will let the lack of oxygen take him to his heavenly home.

I'm glad I understand now how much he wants to be here!!

 

 

I still have hope.

And I will have that hope, up until the very last breath!!

And even then I will hope that someday he will get his body back, and he WILL walk!!
I will never let go of the hope!!



Hero of the Heart

 

 Bradley's hospice doctor was here on Monday.

Bradley has sounded like he's breathing through water for a month now.

Seriously junky.

 

 

And she suggested we try taking down his water intake.

Problem is he's already really low.

But on days where the mucous just oozes out of his mouth, it works to turn off his food.

So I thought I'd try it.

It reminds me of when my Grandmother was passing and she would only drink little sips.

She had no use for food and didn't eat for the whole last month.

 

 

So we turned down the liquid food. And guess what? It caused other problems.

He couldn't eliminate.

And yesterday he was screaming in pain trying to get it out.

It's a fine balance.

Tom suggested we go higher one day and lower the next.
I think that is what we will try.

It did make him sound better.

 

 

Those watery breaths are just scary.

It sounds like he's drowning sometimes.

 

 

On Sunday there was a baby blessing.  

And the babies uncle has Downs Syndrome and he is about my age.

And he got up and bore his testimony.

And his words touched my heart.

And I cried the entire time he spoke.

He is such a hero.

Such an example.

And if there was ever a testimony I was privileged to hear, it was his.

 

There was a time I was grateful Bradley didn't have Down Syndrome, but now I wish he did!!

I'm jealous of the prognosis.

And that reminds me to be grateful for what I have - right now!

Bradley has saved my heart in so many ways.

He is my hero of my heart.

 

The Suction Machine and A Chair for Bradley

Some of my earliest memories from Primary are a suction machine being used.

There was a little boy in my primary who had suffered a near drowning when he was a baby.

He was resuscitated by his family members and the emergency crew.

He did require a tracheotomy to breath from the accident forward.

He also suffered enough brain damage that he never walked. Never talked.

He was a sweet spirit.

And I remember him sitting in the back of the Primary room in his chair.

And you could hear when he needed to be suctioned.

And I remember the sound of the suction machine.

How loud it was.

 

I also remember when the Primary lost those sounds.

How sad his family was.

But I remember on more than one occasion hearing his Mommy talk about his passing.

And the miracles she felt around the time of his passing.

 

 

Bradley has had lots of secretions this week.

I've needed to use his suction machine daily.

And every time I turn it on,
I remember the boy from my Primary.

And his family.

And I'm starting to really love that machine.

 

 

Now that I'm having a break from the appointments,

I'm trying to get done all of the things I have neglected since Bradley's birth.

I walked into a store the other day with intentions of buying new running shoes.

My old ones had gone flat.

And as Charlotte, Bradley, and I rounded the store, my eyes caught sight of a little chair.

It had cream upholstery and a slouched back.

I sat it in and found it was also very comfy.

And the tag reflected a sizable mark down.

I couldn't figure why it would be marked so low.

It looked in perfect condition.

 

And I picked it up and tried to figure how I would get it to the register while I was pushing Bradley.

But suddenly a male employee appeared out of no where.

I asked if he could take it to the register for me; that I wanted to purchase the chair.

 

 

And he looked down at Bradley and said it would be no problem.

And as I pushed Bradley to the register, another lady looked at Bradley in his stroller.

She offered me a cut in the line.

And the check out counters were high.

And the employees behind them couldn't see my Bradley.

I thought that perhaps they would offer me help to my car, but they didn't.

And that was okay.

I would work it out somehow.

Even if I had to put the chair down and rest,

on the way to my car, we would eventually make it.

 

And the lady who had let us cut the line,

caught up to us and offered to push Bradley,

while I carried the chair.

I told her how grateful I was for her help.

And about half way to the car she asked what was wrong with my baby.

 

Where should I start?

 

And I told her that he was having all sorts of problems.

That he was getting close to turning two and no one really understood what was wrong.

But that his development was now regressing and he had been admitted to hospice care.

And she started to cry and asked if she could bless my son.

 

And she said a prayer as she held Bradley's hand.

And she told God she believed in miracles and that she was asking him for one.

And when she finished we were both crying.

And she and I hugged.

I wasn't sure what to say, except for thank you.

 

And she was part of a miracle for Bradley.

But not the one that she expected.

She helped me to get a chair that I could take pictures of Bradley in.

Pictures that I will always remember him with.

 

I've talked about miracles before.

So many miracles Bradley has been a part of.

But not the miracles most men expect or want.

Of course, I would prefer a miraculous recovery for Bradley.

But if that never happens, and he passes too early,

I want to remember the miracles that happened all around him.

And this was just another one of those miracles.

The miracle of the chair.

After the Trial of your Faith

 

I seriously caught about 15 minutes of church today :)
We sat down in sacrament and Jacob started trying to scratch his eyes out.

I realized he needed some allergy medicine and he and I left to get him some.

By the time I got back to sacrament, we were on the last speaker.

And it was such a beautiful talk.

Exactly what I needed to hear.

He talked about scripture study.

How the scriptures had helped him gain and keep his testimony.

He talked about his mission in southern Arizona and all the doors that were shut in his face.

And he said we never know how long our trials are going to last.

 

That struck a cord on my heart.

This has been the longest trial I have ever had to endure.

And yet it has been too short too.

 

The long parts have been enduring the suffering. 

I've felt too much sadness with his undiagnosed, developmental delay and blindness.

Those seizures.

And now his respiratory failure.

The fact his brain is declining.

Like an old man or something.

Makes me wonder why God wanted all of this.

It's has been a trial of my faith.

 

 

 

 And then other parts of Bradley's life have seemed too short.

His doctors have been discussing his death with me from the beginning.

Tom and I have been discussing his death from the beginning.

When he turned 8 months old, the doctors started looking at diseases with short life expectancies.

 

 

Every day has been a miracle.

EVERY.SINGLE.DAY.

 

I hate to feel the trial amongst the precious fleeting moments we have left.

I know it is going too fast.

Sometimes I stop mid-sentence and look at all my kids here with me and I just try to soak it up.

It cannot end without me trying to capture it all!!

Freeze it somehow.

Take 15-thousand more pictures :)

 

 

This thing we call mortality is very confusing sometimes.

Very treacherous.

Yet blissfully precious.

 

 

Grateful for every single, beautiful and struggling, moment tonight.

It's been too short.

 

 

He has been my trial and my faith.

He is my everything.

 

 

 



Brain Hiccups and a Reassurance

 

On Friday night, Charlotte was up, sick in the night.

The cleanup involved both Tom and I :)

And after two hours of trying to help Charlotte make it to the right place,

Bradley started fussing in his room.

We thought we had woken him up with our noise.

I went into check on him and saw that he was in fact shivering.

 

Hospice has told us that kids with neurological disorders start to lose control of their bodies,

and usually temperature control goes along with that.

Bradley's temperatures have run low since the NICU.

But now he runs high and low constantly.

It can be controlled with Ibuprofen and Tylenol when it causes him distress.

Sometimes his cheeks are bright red, his face is burning hot,

and his toes are icy and he is not always bothered by it.

 

But on this night it was bothering him. I could tell by his cries.

And I picked him up and we sat in our chair and I covered him with a blanket.

And Tom took a break from Charlotte and brought us some Tylenol.

 

 

And I held him and warmed him.

And I realized he was struggling to breath too.

He was gasping for air and crying the whole time. 

Even with the oxygen, he was struggling to breath.

And I decided to give him the morphine for the very first time.

 

But I asked Tom to give Bradley a blessing first, and to give the tylenol a chance to work. 

I held Bradley during the blessing.

Even though he was struggling to breath, I realized what a strength he has in his eyes.

I realized, looking at his strong eyes that Bradley is not afraid to die.

 Tom said that Heavenly Father would take Bradley at the appointed time.

That is the very first time Tom has ever said that in a blessing for Bradley.

 

And we gave Bradley the morphine.

And he stopped crying and calmed down and fell asleep.

And we put him in our room for the remainder of the night.

 

 

And the next morning he was fine.

It was like his brain had had a hiccup and couldn't do what it normally does.

 

For a while now, I've been scared of being alone with Bradley when he passes,

but on Friday night, I realized I CAN do this!!

I can hold him when he is struggling to breath.

I can make him comfortable.

And when he passes I can be with him; alone if I have to be.

 

 

And now I understand how all of this is going to play out.

He is going to do what the neurologist said he would.

And it is starting.

 

 



Carry Us to Eternity

You always have hope for your children.
That is something, as a Mother, you never give up.
I still have hope, even in the evening hours, of days like today,
that Bradley will stop seizing someday.

This morning I was awakened by the sounds of Bradley seizure cries.
Sometimes they are so relentless, he screams out in anticipation of the next.
And he had about 6 seizures in 20 minutes this morning. Or perhaps it was a 20 minute seizure.
I held him and hoped they would not be his last.
And I gave him an emergency medication.
 And he's been asleep since then.
And I'm grateful he is still breathing.

I am grateful still, for what I have.
Days that are still filled with the sounds of Bradley breathing.
I am grateful I can hold him in my arms and watch him sleep.

 

 

The days that I actually see his eyes are becoming fewer.

But I am grateful we still have those days.

That I can still see him. 

 I am grateful I've had these near 20 months to get to know my Bradley.

And our bond will last for all eternity.

I know I can be carried on his memories into eternity.

 

My heart is screaming in anticipation for the day when I shall see him how he was intended.
The day that he will see me again too.

Carry me on your wings sweet Bradley;
and I will carry you in my heart.


Photos by my friend and photographer, Amanda Sanders Clark.



Respiratory Failure

 

 It always takes me a few days until I read the papers some doctor or nurse hands me.

I just don't have the mental capacity for all of this sometimes.

And a few weeks after we were admitted to hospice,

 I finally sat down and read Bradley's paper work.

Primary diagnosis is respiratory failure.

I hadn't realized that completely.
But now, that makes sense.

 

 

And last week the kids and I ran some errands and took some boxes to the post office.

I thought I should stop and show the kids where we were talking about burying Bradley's body.

Ask them what they thought of the spot.

The sun was just starting to set as we pulled into the cemetery.

A single security guard watched our van circle the parking lot.

I showed the kids the children's section.

I showed them how you could see the mountain that was behind the temple from the plots.

And I asked the kids if they liked the spot.

They all said they did. And it wasn't as sad of a conversation, I was thinking it would be.

And I showed them how close it was to the grocery store; and the post office.

 

And we drove out to Lake Mead afterward, watching the sunset the entire way.

This land holds so many memories of the last 13 years of my life.

And I fear it will hold one of my most painful memories too soon.

 

 

But that beautiful view from Bradley's future grave gives me a lot of comfort.

To see the mountain behind the temple will always give me comfort when I go to visit.

And I know it is a great resting spot for his mortal body.