Night Watch

Hannah and I take turns on the couch, to make sure he is ok. Tonite is my turn.

The oxygen makes a consistent noise.

Click..

Kalink chuhhhhh

It’s a comforting and frightful song.

When I hear sirens from emergency vehicles, I used to think,’Oh No!!’

But for years now, my ‘Oh No’s’ have become ‘Help is on the way!’

The song is ‘life.’ It should be more comforting. But it’s not....yet.

He went outside today; sunshine and vitamin D: check.

We persuaded him to take his dinner at the table tonite. He got halfway through and then had to lie back down.

Steps in the right direction.

Many other small accomplishments; too personal to say. But all in the right direction.

As this week comes to a close, the greatest accomplishment for us all was just rest. We are all so very exhausted.

Tomorrow is Friday. The first Friday in 90 days; home. We are thrilled!

Maybe next week we can make a leap towards something. We will have more energy. (Hopefully). This week we have been busy, nonstop. And all of a sudden it’s 4 or 5 and we haven’t even thought about ‘what’s for dinner?’ It has snuck up on us every single day.

Next week....maybe we will have a better plan.

But this week? We were just happy to be home and not have to go anywhere.

He coughs at night. A cough that doesn’t sound complete. A struggled cough. I hold my breath. And then it’s calm, once more.

I am glad we are not alone. Just knowing you are there really helps. Thank you so much for all of your responses. Leaving comments is not very user friendly, so we have discovered.

Plan B; email love. Thank you for that. I cannot tell you how much it means.

We do have each other. And that is the greatest. But to have you as well?

It gives me hope that we can make it through.

To think they wanted to send him home three weeks ago with a trach and a much weaker frame. I am so glad I put my foot down. He was barely ready this time. We are sitting on the edge of our seats.

But he is motivated. Transparency from us all makes going forward more of an incentive. And he is really giving it his all.

Today wasn’t the greatest. He had an upset tummy and was having a hard time catching his breath.

We are all learning how to b r e a t h e....

Letting go

Trusting

Hoping

Trying to hope

Desperate

Weak. And yet

Supported.

And another song...
Symphony Song 

Thank you guys!

Love love,

Us