CDH Awareness Video (Godspeed, Sweet Dreams)

Life After Loss

 

 

I'm not sure how others handle the loss of a child.

And I know not every piece of advice is good advice.

But one piece of advice stands out above the rest:

 

"The pain never goes away,

it only gets easier to hide"

 

Its been 17 week and 6 days since my Liam grew wings.

Some days are harder than others,

but every day is hard.

 

I shouldn't of had to say goodbye to my son,

who was only 4 years,

5 months,

and 1 day old.

None of us should ever have to say goodbye to our children.

None of us should have to see our children struggle,

or fight for their right to just live.

 

But we do.

Because of Congenital Diaphragmatic Hernia.

 

Sure we know the statistics:

1 in every 2500 liv births are effected by CDH.

Only 50% of babies survive.

Most that do suffer life long medical problems.

 

But statistics are just numbers,

until we have to live them.

 

When we were in NICU with Liam in 2011,

there were 4 CDH babies fighting.

Only 2 of those babies made it out of NICU.

 

Liam fought every day of his short little life.

And even though we knew there was always a chance we could loose him,

we just thought as each year passed we were closer to being out of the woods.

We didn't expect this.

 

CDH doesn't just cause problems with the lungs,

heart,

or intestines.

It messes with the immune system and weakens it.

And when you have a child who is failure to thrive and unable to gain weight,

their immune system is even more weaker.

 

A "simple" cold would land Liam in the hospital and on oxygen.

He fought frequent pneumonia's,

colds,

flu's,

RSV,

until he caught a virus he could no longer fight.

 

He battled this virus for two weeks.

It would seem he got better after 3 days,

then sick gain.

Basically he couldn't fight this off any longer,

and his body gave out.

This virus caused a pulmonary embolism,

which took his life.

 

There hasn't been a day without tears.

Some days I can go out into public and hide my sadness,

my anger.

Other days all I can do is cry.

 

Liam's life came down to numbers and boxes.

How long he lived.

How much it cost to cremate him.

The urn,

a wooden box his ashes forever rest in.

The number of boxes his stuff got packed in.

Boxes and numbers it seemed was all anyone cared about.

Except me.

 

Because no one on this planet knew Liam like I did.

 

And I think all mothers feel like that.

 

So why do I continue to spread awareness when I could just walk away from it all?

Because I can't walk away.

I don't want some other family to be blindsided like we were.

Because someone could learn about CDH from something I do or say,

and that leads them to spread awareness,

and possibly one day someone will invest in research and make a difference.

No it won't effect me since my son is gone.

But one day it'll make a difference for our great great great grandchildren if we're lucky.

 

I don't know what makes anyone feel "better" about their loss.

I don't know how others cope with it.

I just keep putting one foot in front of the other,

moving forward in hopes that one day things will just click,

and one day I'll "feel better".