Click Click Click

Those are the sounds of Liam's little tongue.

Sounds that we worked hard to get him to make.

Sounds we weren't sure if he'd ever figure out.

But now,

At 3 years old as he sits besides me,

smiling bigger with every click of his tongue.

I of course smile back because,

duh I'm happy.

Every little noise,

every new word learned,

every jump,

every breathe,

means we won.

We won and CDH lost.

Every day we are tackling those hurdles,

and finding a way over,

through,

or around them.

Every day is an opportunity to overcome.

Every day is an opportunity to smile,

and laugh,

and live.

The CDH community has been faced with so much loss lately.

It hurts.

I may not know these people,

the children,

these babies,

personally,

but it still breaks my heart to see the loss.

To see their pain.

Their journey in finding a way to make this work for them.

It's a continued reminder of what we could have lost.

What we still can loose.

That things change at the drop of a hat,

the change in the wind,

from one breath to the next.

I would love to be secure in the fact that my son is 3,

a survivor,

and will always be a survivor.

But that doesn't make him untouchable.

There are a million things in life that can go wrong.

All I can be confident in is that I have this day,

this moment,

this breath.

That's all any of us can be confident in really.

Don't take for granted the little moments that make life worth living,

because one day you won't have those moments,

and you'll wish you enjoyed them while you could.

(Image is a pic of Liam receiving a flower from his cousin Chass, reminding us to take the time to stop and smell the "roses")

Want more of Liam? Checkout his facebook page

The Weak Link

There are times,

Days,

Moments,

When I wish my son understood the limits of his lungs. 

Why on some days he shouldn't be running,

Shouldn't laugh too much. 

Shouldn't be the hyper little boy that he is. 

And then I feel guilty. 

Guilty for telling him to stop running,

Laughing,

Playing like a healthy boy. 

So instead I stop myself. 

I let him be free,

If only for a little while.

I've had to learn to take things in stride.

But even then it's hard.

I try to cover up his sick lungs,

Implement story time,

Movie time. 

Snack time. 

I get down on the floor with him to play cars,

Blocks,

Trains,

Anything that requires a few minutes of sit down time.  

We do breathing treatments as needed. 

More on some days then others.

Lately it's been more.

He's only 3 year old. 

He shouldn't have limits on how much he can run,

Or play,

Or laugh.

He shouldn't get exhausted by eating,

Or drinking. 

But that's the nature of his lungs. 

The nature of the disease that plagues us every day. 

Chronic Lung Disease. 

Maybe it's been harder lately because he's had more flare ups. 

Two weeks worth of flare ups. 

It's hard on all of us to see him go through this.

We all know when it's time for a treatment. 

Me,

Hubby,

6 year old sister,

Even 3 year old Liam. 

Sometimes when the treatments are close together,

He will fight them. 

I don't blame him. 

So we try to make it fun. 

Read books,

Play with trains or cars,

Watch tv. 

I keep praying he will get better. 

Have less limits. 

I have to have faith that that will be the case. 

Break is almost over

School is almost back in session which means going back to worry about pickups, lunches, homework and IEP's. I'm mainly worried about Liam's IEP. And since I'm no longer "allowed" to just stay in class with him whenever I feel the need too, I won't know how he's handling his days because they don't recognize when he's overstimulated and refuse to stay him away from the situation when he needs it. Instead I'll have to deal with the effects from wens through Mondays because it takes him that long to get over it. It hurts him. It had a long term effect and no matter how many times I tell them they just don't listen. 

His first day back is wensday and I'm already nervous and agitated over this. I don't know exactly what I'm doing to do to rectify the situation. Talking to them hasn't helped. I don't have many other choices left. Maybe talk to his pedi about it and see what he recommends? If I pull him out what will that do? He won't get any therapies he needs then. He's only even getting PT at school when he's also supposed to get speech and OT. 

I'm not looking forward to the kids going back one bit.