Tuesday, January 29, 2013

Next To Me

In most stories, the hero doesn't die.
But I have a feeling my story will not be like most.
And as you can imagine, my heart has been very heavy this week.
And the children are old enough to know what's going on.
And I have always been a VERY open person.
And so I am VERY open with my kids.
And the discussions we are having right now are very intense.
And lots of tears are shed by me and by them.
 And tonight Jacob was crying and telling me
he didn't want to be without his baby brother in this life.
And that just makes my heart hurt.
This is NOT what I was planning!!
I wanted Jacob to have a brother to play with!!!
And sometimes it feels like my dreams are falling apart.
And I've been thinking a lot about Bradley being with me, even after his body is gone.
That his spirit will stay around us.
And that he will be with us.
And that the grave will not separate our family.
And as Jacob was sobbing, and I was hugging,
I realized that Jacob was lucky to get to have his brother next to him for the remainder of his life.
And I said,
"Jacob when you go on your mission and leave your family,
you will still take Bradley with you.
When all the other boys have to leave their brothers, yours will be there with you the whole time!!"

And Jacob thought that was pretty cool.
And I told him that Bradley will be around us always.
And we are lucky we get to have him next to us, always!!!
 I've been listing to this song.
And thinking about how God is always with us.
And if God is always with us, then when Bradley goes to be with God, Bradley will be with us too.

Our loved ones do not leave us when their bodies die.
They are all around us.
It's these bits of knowledge that make going through this trial, easier!!

Monday, January 28, 2013

Trust in God and Let Him Go

There is not too much of an adjustment now that we are under a home hospice care.
But I am having to deliver the news to all of Bradley's doctors and specialists.
And we are not stopping treatment. I am just letting them know.
And I've been surprised that every doctor has been feeling
 like this was the direction Bradley was going, as well.
 And today we saw the neurologist for the results of Bradley's 24 hour EEG.
She said the EEG captured 12 seizures.
And that they were all coming from the right side of Bradley's brain.
And she hugged me when I told her about hospice.
She told me that it would be okay.
And that I have done everything I could
 and that I wasn't giving up on Bradley by accepting hospice care.
I asked her how children die from seizures.
If they have one big seizure or what?
And she told me that when a brain is seizing this much that it is a sign the brain is going haywire,
and that one day the brain just simply stops controlling the body.
Breathing and other systems stop as well.
 And I shed some tears and told her I was scared.
And she told me not to fear.
She said I should trust in God and accept his will.
And we talked about Bradley being tired of his body.
And she agreed that he is probably tired of not moving or eating.
And she thinks his spirit is wanting to get out of this shell.
She said that she has Mothers who are always trying to keep their babies here,
and that it would be very selfless of me if I didn't interfere with the natural process of the regression.
And if his brain dies, would I really want him living on machines???
And she asked if I believed in God or a higher power.
And I told her I was LDS or Mormon.
And she said, "Then this will be easier for you than most."
And she hugged me several times.
And she prescribed a new medication for us to try.
To try and make Bradley more comfortable.
And my challenge now is to trust.
And to realize I have never been in control.
And to let Bradley go, when he is ready.
And I am grateful for the understanding I have of the existence of God.
And the bigger picture.
And where Bradley will go when he leaves me.
And that he is mine forever, no matter what.

Wednesday, January 23, 2013


Along time ago, after I got home from the NICU with Bradley,
I sat in a chair in the afternoon light with my baby boy in my arms,
and I said a silent prayer.
I asked Heavenly Father to please heal Bradley.
I told him if he would heal Bradley,
I would raise Bradley to do his will.
And the spirit told me that Bradley would NOT be healed;
and that Bradley WAS going to do Heavenly Father's will!
You can understand how that was not the answer I had wanted.
Because of Bradley's seizures, he has stopped rolling.
And he has stopped pulling off his nasal canula and feeding tube.
He has more than 10 seizures a day.
And he sleeps 16-20 hours a day.
He's sick.
Any other child would be hospitalized. But Bradley is impossible to get IVs in.
And the ER has sent me home saying they can do no more for us.
And the day after the port surgery was canceled,
I called a few of Bradley's doctors and scheduled appointments to go in and talk with them.
To tell them I'm done trying to "fix" Bradley.
That I have drawn my line of where I want to stop.
And even mention the word Hospice to them.
I was scared out of my mind to use the word.
It sounds so scary to so many.
And I talked with the nurses in the offices of Bradley's doctors.
And I told them I was feeling like we were coming to a turn point,
 while I sobbed through my words.
Later that afternoon, Bradley's neonatologist contacted me.
The neonatologist who is also a hospice doctor.
And she said that she has been talking with Bradley's pulmonologist and
that he didn't think it was inappropriate to recommend Bradley for hospice care.
And she said she could get him to write a referral, if I was ready.
And I called her and we talked about it.
And I told her I didn't like the word hospice.
But that I would feel relieved if we were admitted.
And, thankfully, she started the process.
I am very grateful for that.
Bradley was admitted into home hospice care on Monday.
And the quality of care is amazing!!
We no longer have to run to the ER when we have emergencies.
And my front room is full of medical supplies because
 with the change comes a change in supply companies.
And a social worker has come out.
And we've talked about final arrangements, just in case.
I've been here before with Bradley.
Too many times.
He's such a scary kid!!
Tom says you have to have nerves of steel to watch him.
But I do not want to fear it.
I want to be ready, if he has to go.
And so this is where we are right now; on hospice.

Thursday, January 17, 2013

The Boy Who was Stuck in the Box

Today we had a port placement scheduled in the wee hours of the morning.
We were there on time; in surgery triage; being prepped for the procedure.
And Bradley had a coughing fit.
And the nurse hooked up the monitor to check out his saturation.
And he was in the 70s with the oxygen going.
And they asked if he had been sick.
And I said he had.
And the nurse shook her head and said she didn't think we could go through with the surgery then. 
SAY WHAT?!?! You mean I don't have to cut open my baby today? I'm outta here!!!
But she wanted me to talk with the surgeon and the anesthesiologist first.
And the surgeon came in. And he looked at Bradley and said he wouldn't recommend it.
I told him I was cool with that and I started packing Bradley's things.
He said, "You don't have to do this Mary. It's purely elective. No one is making you do this."
And I told him I knew that, and I felt relieved.
He told me I didn't have to ever do this if I didn't want to.
And I told him I don't.
He said, "We can wait till forever then."

And the nurse told me to wait, and not to run out the door.
She needed me to sign somethings and finish the paperwork.
I hastily signed it and I walked out into the parking lot
and welcomed the early sun on me and Bradley's faces.
And I came home and picked up the kids. We went shopping with Bradley.
We went to lunch too.
And we all took our turns pushing Bradley around.
And I came home after our fun day, to work.
And right as I was finishing, and starting to think about making dinner,
a dear friend posted that her special son had passed on to be with our Heavenly Father.
For some reason I was the first person of all of her friends to see the status update.
And all I could think was "<3"
And I started to cry an uncontrollable cry.
 I came into my room to check on Bradley who was having his afternoon nap.
And he started coughing.
And he couldn't stop.
And I changed his diaper and held him in my lap and touched his skin in my grief.
And thoughts of my friends special son laced in and out of my mind. 
He and Bradley have a lot in common.
Lots of the same disorders.
Very close in age.
Both boys.
Both the youngest in their families.
They have the same wheelchairs too!
And I could not stop seeing his face as I was touching Bradley's skin.
And Bradley kept coughing.
And then he started to cry with me.
And I realized he was struggling to breath.
And I checked his saturation and it was VERY low.
And I started trying to get a hold of Tom.
And I could not get through.
And we loaded in the car and I dropped the kids with a close friend.
And I drove down to Sunrise.
And I vowed to myself, before I walked in the doors,
that they would not poke Bradley with any needles.
That I just wanted some antibiotics. And that was all we were there for.
And Bradley would not breath for them either.
And they rushed us back to the room and they put a bag on his face to help him get more oxygen through his mouth.
And he struggled to breath for a bit.
And they told me he looked sick.
They took some swabs. Influenza and RSV.
They took some xrays of his chest.
And I asked what they were going to do.
And they said they wouldn't know till the tests came back.
Finally the tests started coming back.
And Bradley started breathing again, for no apparent reason.
He had no breathing treatments.
No medications.
And the ER doc said he'd give me antibiotics but
that he didn't know what difference they would make.
I think it is time to talk more frankly with our doctors.
About what we are doing.
What if I just want Bradley to live a happy life and stop with all these tests and interventions?
What will that mean for us?
What that will mean for the doctors?
Because I'm tired, and I think Bradley is too.
And we don't have to do this if we don't want to.
And I told my Mom tonight that I feel like my son has been stuck in a box for 18 months
and that if he could be free from that box I would feel a great relief.
And me and my Mother cried.
Bradley is so special. And we wish he could stay with us, so desperately!!
But my intuition is telling me that his time to get out of this box is getting closer.
And he and I are tired of him being in it.
So if our Heavenly Father has mercy for us, he will grant us relief.
And let our dear Bradley out of the box.

Friday, January 11, 2013

The Hand We Were Dealt

We've been spending a lot of time at the neurologist's.
And a few weeks ago at our appointment,
 the nurse who took us back to our room and I were chatting.
She was telling me how much she liked my children's names.
Madeleine, Jacob, Charlotte, and Bradley.
And she was helping me maneuver Bradley's wheelchair through the office.
I told her it reminds me of my double stroller days, but that it was a bit easier to push.
She told me she remembered those days too!
She didn't look old enough to even have kids.
And I asked her how many she had.
She said she had three.
She said before she got her car, she would wake every morning 3 hours before work started
 to get her babies to daycare and herself to work.
She would walk to the bus in the cold.
3 babies piled in the double stroller.
And they would load the bus and ride for an hour to get to the daycare and then to work.
She said she really appreciated her car now,
although now she was getting fat, because she didn't have to walk as much :)
I told her that must have been a hard time.
She said she had done it to herself.
She closed the door, and I thought about how she was too young for it to be too much her fault.
And tears came to my eyes as I quietly thanked my Heavenly Father
 for my Honda Odyssey with DVD player and leather seats.
For being born to affluent white people who had jobs.
Life is so unfair sometimes.
To many of us, who are just going along, not anticipating a trial.
And then one lands in our laps.
We have had a horrible flu this week. I was delusional yesterday.
I was having dreams about CPS taking my kids from me.
And when Tom came home I told him to please call CPS
and tell them they could not take my children from me.
That I would die inside if they took Bradley.
Tom fed me and gave me some medicine and fluids.
And within an hour my sense were back.
I'm so grateful for ibuprofen.
And tonight I went to CVS to get Bradley's regular prescriptions.
And tissues, and Tylenol, and cough drops, and things for a family of 6 with the flu.
A cold front has moved into Vegas.
And parts of Las Vegas are seeing snow flurries.
And there was a teenage boy outside who was nestled against the cold exterior wall of CVS.
He had a sign he had laid down so he could eat something someone had given him.
He was devouring it.
He looked too young to be homeless.
And the pharmacist took FOREVER getting Bradley's prescription.
And by the time I got through the payment I realized
I had accidental pushed the button to get cash back.
I took the cash with full intention of giving it to the boy outside in the cold.
And by the time I got outside my heart sank when I realized he was gone.
I asked Tom, who had been sitting in the car, what happened to the boy.
Tom said he didn't know.
I had wanted to take him home, although I don't know if Tom would have let me.
This little Bradley bear has made me so sensitive to others in need.
I totally get struggles now.
Heavenly Father; I get it!!
I understand!!!!
Life is hard for so many and sometimes it IS NOT their fault!!!
Sometimes they are just kids who have been not dealt fair hands.
Innocent children.
And I am a lucky woman.
I have learned that.

Tuesday, January 8, 2013

Bury Your Feet in the Sand

Bradley has been having tons of seizures since the beginning of November.
It started with 5-7 a day.
Now we are at about 20 a day.
It leaves little time for play or development.
There are days he does not roll, growl, or look at anything.
And most of his doctors appointments end on sour notes and a doctor with a furrowed brow.
I'm trying to ignore as much as possible the problems at hand.
And the holidays were a wonderful break.
And we were able to take all of our children to make memories that will never die.
And there were many times at Disneyland, where the reality of what I'm dealing with, hit me.
 I never knew there were so many rides with wheelchair lifts and wheelchair access.
And we had several workers extend a second round on the ride.
I was grateful.
 I felt lost looking for the exits of the rides.
 I know where every entrance is.
But not the exits.
And at first I felt a bit guilty not having to wait in very many lines.
But then I realized my kids have been through a tough time too.
And they don't have a normal baby brother.
And somehow it seems fair to let them skip the lines.

And the next day we woke up, loaded the car and started to head home.
And about half way up the 55, I told Tom I felt a need to take Bradley to see the beach.
And Tom turned around.
And we found a little spot in Newport.
And parking cost per hour, but the handicapped spot didn't have a meter.
It was the natural thing to take off his socks, and put his toes in the sand.
I thought about burying him in the sand, but I didn't want to get sand in his g-tube.
So I buried just his feet instead.
And I pushed hard on the sand so he could feel it.
That cold, soft, wet sand.
And the kids figured out they could bury themselves too :)

I've never enjoyed the beach, like I did that day.
I'm hoping that I can take Bradley to the beach 20, NO, 40 more times!!
And that my children don't know where the entrances are to the rides at
Disneyland because they are so used to going through the exits.
I'm praying that God grants Bradley and I a few more years.
Because I'm not done.