Sunday, March 24, 2013

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.

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.

Sunday, March 17, 2013

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.

Wednesday, March 13, 2013

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.