Walking in the Smooth Grass: THIS is OUR LOT.

THIS is OUR LOT.

Words my husband whispered to me over Thanksgiving this past year.

What does that mean exactly?

A lot, actually.

No pund intended here whatsoever.

Ever feel invisible in a large group of people?

A group of people that you know many of the faces around you?

Some very close friends even.

How is that possible?

All I can say, is it "just is".

It was a beautiful evening.

Hundreds from our church body were celebrating our church turning 10 years old.

May not sound like a big deal, but in the church-world, it is a BIG feat!

We were excited to celebrate too.

The Lord has done so much in the past 10 years.

This is the church I learned that I WAS THE CHURCH and that the church isn't just brick and mortar.

This is the church I met my husband.

This is the church our kiddos were dedicated.

We have long, deep rooted, lasting relationships within this body.

And we love it.

We love it all.

But this night was different because we weren't at our church building, like we usually are.

This night, we celebrated on the football field of St. Charles High School.

A big BBQ and party.

For most, I believe the night was an absolute success of celebration.

But our family had a completely different experience.

There was a huge line for food, so we made our way to it.

All the kids were running around playing…bounce houses, catch, you name it.

Not to mention the many other adults/college kids playing ultimate frisbee and throwing around footballs.

Sounds fun, right?

For a family with a child with a special need, not so much.

It was an open area and Graham absolutely loves that.

He LOVES to just run.

And we love that about him.

But here, he could not JUST run.

There were hazards all around him.

And those hazards were people.

People who don't know there is a little boy with a special need nearby.

People who don't know you can't just yell at him to stop, he doesn't understand commands.

People who don't know he can't stay in the bounce house area with all the many other kids because that, too, is a hazard for Graham.

People who don't know that he doesn't notice that balls hitting him could be a concern.

People who don't understand that if you call his name, he won't answer because he doesn't understand he is suppose to.

People who don't know that he doesn't understand if he runs by or in front of someone he could get hurt.

People who JUST. DON'T. KNOW.

We got our food and proceeded to eat as fast as we could.

This was not a good place for us, we quickly realize and knew we needed to leave.

Some friends came up to make conversation.

That was nice, truly, but we couldn't REALLY talk.

Unless, you are ok running along side of me as we carry on a convo because I can't just let my son run anywhere.

And do you think anyone is REALLY up for that???

I will let you answer that one…

We left.

It was a quiet drive home.

As we went to bed, Scott shared a little of his heart with me.

He said that I was the only one that truly understood, that 'got it'.

And he was right.

This was OUR son.
I won't share the words shared in confidence between me and my husband.

But, we both felt it.

Right there in the gut where it hurts like you know what.

In a crowd full of so many, we felt alone; invisible.

Please know...we are not blaming anyone here...just sharing a little of the "hard" we feel.

Because it IS hard.

The truth is there many other times like this one.

Including a recent trip to our family's home for Thanksgiving.

Everyone thought it would be a great idea to head out to the back patio.

To enjoy an open fire pit.

That was right by an open swimming pool.

Both things that are a safety issue for our son.

It would be impossible to watch him like a hawk, like we usually do already.

We would have to hold him down on our laps to keep him safe.

And who wants that?

Not us, not our son.

So instead of enjoying the company of family and friends, we isolated ourselves inside.

It was our only choice.

Raising a child with special needs comes with an incredible amount of challenges.

I am not trying to lessen the burden of being a parent to any child.

We ALL know there are challenges for ALL children.

"Parenting is not for wimps"…quoting my husband.

He is right about that one!

BUT…what I am trying to communicate is that the road can many times be lonely.

In both the circumstances above, we were with people we knew and loved.

And the road can STILL be lonely.

Many don't understand what it means to live with Down syndrome.
And that is ok.
Why would they unless it was a constant part of their lives?

Many don't ever think twice about why we must sometimes isolate ourselves from others.
Foregoing certain invitations because it isn't a "safe" zone for our son.
And that is ok too.
Because they don't 'live' in our world.
Again, they just don't know.
But it still hurts.

I welcome others to ask questions about Down syndrome, about Graham.
To learn, to educate themselves more on something 'new' to them.
But the truth is, most don't.
And I don't expect others to have a burden to know everything.
Although there have been countless times I wish others would desire to know JUST a little bit more.
But maybe, just maybe, they can 'feel' a little of me through these words.

We love our Graham to pieces.

I pray over him each night as he goes to bed, thanking God for giving him to us.

I truly am thankful.

You see...

We advocate for our little man like nobody's business.

We go to countless medical appointments for numerous reasons.

We are constantly learning and researching on his behalf.

We go to many upon many school meetings for therapy updates, IEP's, ETC.

We go to lots of events to support DS and raise awareness.

We try our best to do all that we can for him and yet we fail, we will always fail.

We are not perfect parents.

Every family has their "lot".