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.



The Little Doll Baby

 

 Things really do happen for a reason sometimes.

Especially in Bradley's life. Things are always working out all around him.

Having in-home care nursing has been wonderful.

The nurse comes and I feel my shoulders and stomach relax.

The first day, the difference, was palpable. I hadn't relaxed those muscles in over a year.

And I slept so well that night. The pressure came off my shoulders.

The whole shift to hospice has done that for me too.

To realize I'm not in control and to let go of that idea.

 

 

Our first nurse was good.

She did a great job at helping me feel relief.

But something was missing.

She didn't hold Bradley. Or even talk to him much.

She was good. Very competent.

But it felt like her heart wasn't with Bradley, the entire time she was here.

She was helpful, just not in love with my son, like I selfishly wanted her to be.

And I thought, "Mary, that's is just your expectation. Let it go. She is good enough."

 

 

And something happened with billing and she was suddenly taken off our case.

And I didn't have any help for the two days I was expecting help.

And it was okay, Bradley just sat in my craft room and worked along with me.

 

 

And the nursing agency called and

said they were sending out a nurse who wanted a job close to her home.

She lives in our same suburb.

And they sent her out, and I instantly fell in love, but I didn't want to get too attached to her.

 

 

And when she first saw Bradley she said, "OH, you little doll baby!!"

And that made me smile.

And she was anxious to hold him.

And she sat and rocked him and spoke french to him.

Telling him he was her little doll baby. Over and over again.

 

  

And today she said Bradley is the youngest patient she has had in a while.

She usually has older kids.

And she has never had a baby on hospice.

And that makes her sad.

 

She said once she had a baby who had a hole in between the chambers of his heart.

He was adopted. His parents loved him dearly and took excellent care of him.

And the doctors all said they could not fix the hole because of where it was.

And the family was expecting his heart to go out at some point.

One day she went into their home to do her shift,

after she had received the news that her brother had passed from a heart attack back in Iran.

She said the patient was a overnight patient.

And she paced the floor with him that night, singing to him thinking about her brother being gone.

And she held him in her arms to comfort herself in her grief.

 

The parents told her in the morning they had heard her singing and asked if everything was okay.

And she told them about her brother and how holding their son made her feel better.

 

And she left. And later she got a phone call that the baby had too returned to heaven.

And they asked her to come see the baby before the coroner came to pick up his body.

And she went and held him and said her goodbyes.

 

We had tears in our eyes as she finished her story.

She said that was a very special patient from over 9 years ago and she will never forget him.

 

 

And then she said Bradley reminds her of a doll she got when she first came to America.

She had been on a tour of an American doll factory.

At the end of the tour she bought a beautiful doll who reminded her of her own sons.

And she LOVED that doll!!

And she had a jealous boyfriend who made her throw her doll away in the airport.

And she missed the doll very much.

 And with tears in her eyes again, she said,

"Bradley's hands and feet look just like my doll's that I lost so long ago."

 

 

I think the lord is having mercy on us in our situation and he is sending us helpers.

Angels to help us through this time.

I love her.

Bradley loves her.

And she loves Bradley.

And for the last bit of his life, I DO want him surrounded by love!!

LOVE is what life is all about!!

Things do happen for a reason.

 



Boy On A Mission

 

 I'm trying to be positive and not let my grief overwhelm me.

Thank goodness I have plenty of work to keep me busy.

To keep my mind off the present.

 

I have always been a future thinker.

A planner.

I'm good at planning things.

Envisioning them too. 

 

And planning what and where we will all be in six months, always begs the question,

"Where will Bradley be?"

 

 

I understand that no one knows the future.

But when most 18 month old babies are learning to talk and form sentences

and I'm still waiting for my 18 month old to hold up his head, it's obvious the delay is huge.

But now, he's not only having delay, but regression too.

And you understand it clearly when you are around him and he sleeps all day.

 

I'm past the point of a diagnosis helping me to know the prognosis.

I know the prognosis. I feel it in my heart. And doctors are only confirming my thoughts.

 

We went to see Dr. Morris last Thursday.

She still does not know what disease Bradley has.

I told her about the retinitis pigmentosa, that the opthamologist saw in the last exam.

Dr. Morris was surprised.

And she said she will reconsider the syndromes that have retinitis pigmentosa,

to see if anything else that Bradley has is consistent with those.

 

I told her he was admitted to hospice because of his uncontrolled seizures.

And I asked her what she thought of that.

And she said, "No one knows. He could do anything."

And I said "I'm sure you have lots of Mothers of children,

whose health is failing who come to you in tears..."

And I felt the tears starting in the back of my eyes.

And she nodded and changed the subject so that she wouldn't have to feel our pain.

 

She started her exam.

She measured every inch of Bradley's body, like she did last time.

The spacing between his eyes and from his eyes to his nose folds.

The length of his hands and feet.

The length of his ears.

 

And they plotted the measurements on the growth chart.

And she said that his growth line is going down, from the last time she saw him.

Especially his hands and feet. That they appear to not be growing.

And she asked about his diet.

And we showed her a can of his food and she did the math in her head

and said he is getting sufficient nutrients.

And she said that seizures can affect the growth hormone levels.

And that if we could get a growth hormone level,

 from his blood,

she would be interested in seeing what it was.

She's sure it would be low.

 

And we talked about having whole genome sequencing done.

She said Nevada Medicaid does not cover the $5,000.00 test.

She said most insurances do not.

And I told her to go ahead and try to get a prior authorization.

That Bradley has been approved for things that he shouldn't have been before.

And her assistant said she would.

And I told her if they got me a cash price, I would try to round up the money too.

I told them money would not be a problem;

but getting blood out of his veins would be.

And they said they would go ahead with attempting to get the prior autorization then.

 

And she said she would present him at the world wide genetics conference in March,

if I would get together the last few test results.

 

 

And after two hours we left.

My head was so full of info and things to think about.

 I could be chasing so many things right now; trying to get Bradley diagnosed.

 

But I feel like the time with my dear son is running out.

I don't know if that's the most important thing for us right now.

 

 

 

 

 

 

I think someday, several years from now, Tom and I will move into a new neighborhood.

A new ward.

And our new friends will look at our three kids and say, "You have three kids?"

 

And Tom will say, "Yes these three, and we have a boy who is on a mission right now too."
And they will say, "Oh? Where is he serving?"

And Tom will say, "In Heaven."



Heaven Has a Plan for You

 

Going through pictures and videos of Bradley is strange.

 He's changed so much.

He's been through so much.

The lights in his eyes have changed too.

 

 

Every picture is so different.

Doesn't help that his hair grows faster than any body I've ever known :)
{that's totally a genetic anomaly!!}
 

Some pictures now, I can tell were from bad days.

And these seizures were here from the beginning.

Days when he was absent. And floppy.

Makes sense why he has never held up that head.

 

And good days too!!

Days when we had new adventures.

Tried new things.

 

Explored this thing called life.

His chance at mortality.

 



Things I have never done before too.

Places my heart had never been before.

 



 

 And lots of afternoons full of peace.

Love, from up above, pouring into my home.

 

 

We each have our own plan.

Our own path.

And I wonder, all the time, how short Bradley's path is going to be.

He's been on a very condensed path this entire time.

So small and short, and yet SO MUCH was accomplished.

There is a plan for him.

And he has been very obedient in fulfilling it.

I am a very proud Mom tonight.

Thinking how short yet how WIDE his path has been.

I'm glad we have done so much, Bradley <3
I'm glad I got to do it with you, Son <3

 



That Will Be A Beautiful Day

 

Sometimes, I don't know how I got here.

Why I was sent a baby who's health is failing.

Sometimes I wonder, "What was the purpose of this??"

 

Today was a good day for Bradley. He was awake. He babbled.

He was feeling good and that made me feel good too.

And our nurse was here.
And I could breath.

My shoulders relaxed.

And I dusted places that haven't been dusted in 18 months.

 

And when he was falling asleep tonight, he had a seizure which made him gasp for air.

And I sat and helplessly watched my Son try to breath.

 

 

Those moments. Those precious moments which are fleeting.

The times when his eyes are normal.

And he acts like he used to.

They are becoming less and less.

 

 

And I miss my boy.

 And those tiny moments give me hope for the day

when I will see him in the fullness of who he really is.

 

 

When he will hold up his head.

And his eyes will be open.

And he speaks to me.

That will be a beautiful day.