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.