Friday, August 17, 2012

Good Days and Bad Days

Some days are so amazingly good.
He's alert.
He holds up his head.
He responds to therapy.
He holds himself in positions.

And some are like today.

In an effort to get out of the house and do something with the older kids,
we have taken up swimming at the indoor pool.
So nice!
Air conditioned!
You don't need sunblock!
Nice ledge for the toddler to swim on.
I can park the stroller by the pool when Bradley gets tired and watch him.
But we get looks.
Lots of looks from strangers, who I'm sure are wondering why in the heck I have a baby on oxygen.
And I justify it by thinking; "It's therapy."
But also THIS is Bradley's life and IF he is going to have one,
we have to LET him LIVE it to the fullest he can.
Disabilities and all.
And I got a handicapped placard!!! YAY!
I've been unloading and loading that stroller for almost a year now, and I'm tired. Whew!
And today amidst the swimming, Bradley kept having seizures. Some tiny. One big.

And it scares me, but we are at a point where there is nothing that can be done.
 I guess we could try other anti-seizure meds with the risk of them not working,
 and it could possibly mess things up for him, and then where would we be?
The hospital.
So we just deal. This is our normal.

And with the congestion finally gone
(because of the holding of the mouth feeding)
I have upped his therapies.
And he is getting a second session each week now.
Cranial Sacral Stimulation.
I understand, some think it's hokey; but I am at the point where I will try anything!!

And this week when we got to our second appointment,
there was a little girl being carried in by her Mother.
I have seen her before. She's the prettiest girl. About the age of Maddy.
Long blond hair and blue eyes. Always dressed beautifully too.
And her mother drives a Mercedes Benz.
And she put her on the chair next to me and then she went back out to the car
and came back with the girl's walker and leg braces.
And I could tell by the look in the girl's eye's, that she was having a hard day
and she couldn't use her equipment.
I could also tell by how her Momma was acting.
They were both having a hard day.

And when Bradley has a bad day, I can hardly move.
He paralyzes me.
I long for the end of hard days.

Sometimes I wish he could be relieved of this body.
The poor baby.
But I know what that really means, and I would miss him terribly.
And so I just continue on wondering how long this will go on.

On Wednesday, Tom came and showed me the obituary of a girl we had been in institute with.
She had been in a wheelchair and had sisters close to her age.
And I remember her, although I'm not sure we ever talked.
And we read her obituary and realized she was two days older than Tom.
And she had had a rare disease that had affected her brain
and this was eventually what ended her life.
And I have been thinking about her all week.
Remembering how she was. That she would have bad days too.

I've been thinking about how her Mom feels.
How she feels.
How glorious to be relieved of that body!
And 34 years of this? I don't know if I can do that!
34 years is a LONG time!

And I'm thinking about how glorious the resurrection will be for her and Bradley.
To finally use their legs in their fully intended, functioning use.
And how they will be unrecognizable to those of us who didn't see past their bad days.

I know Bradley will look different than he does now.
What a day that will be!
That WILL  BE an good day.
It will be a fabulous one!!