I hope...

I heard the sweetest conversation yesterday.  It made me smile and my heart melted a little.  And then it made me sad.  Reality often makes me sad.

The conversation took place at Goodwill (I love Goodwill).  A woman was there with 3 adults who had obvious developmental disabilities.  They were having a great time, shopping around, talking and laughing a lot.  And yes, I might have been following them around because one of the ladies had Down Syndrome and that's what I do... I follow people around that have Down Syndrome (especially adults). 

Here's a little of their conversation:

Lady with DS:  When is Easter?
Caregiver:  In the spring sometime.
Man:  It's in March or April, when it starts getting warm outside.
Lady with DS:  What day of the week is it on?
Caregiver:  I don't know that either (and yes, she WAS the caregiver and yes, I WAS shocked that she didn't know what DAY Easter falls on... but whatever)
Man:  Do you remember Shelly that used to work with us?  I went to her house last Easter.  I know I did.  It was on a Sunday and I went to Shelly's house.  You know?  She used to work with us?
Caregiver:  No, I don't think I know Shelly.
Man:  Oh, well I know Shelly and I know she would remember me.  I know she'll never forget me.  She was so nice. She'd never forget me.

How sweet is that?  He just knows that Shelly would remember him and never ever forget him.  They celebrated Easter together.  That's what made my heart melt... the obvious and true happiness that Shelly brought to this man's life. 

Then reality hit. 

Shelly had most likely moved on.  She didn't work with them anymore and perhaps she DID remember him but not as vividly or fondly as he remembered her (and yes, of course I could be totally wrong on this but it sounded as if he hadn't seen her in some time and we ARE talking about reality here).

The conversation brought back a memory of my 6 week post partum check up at the doctors.  The doctor asked how Josh was (after she apologized that he had Down Syndrome again... she had apologized already on the day of his birth, a few times actually).  I told her that he really was no different than my other babies at that age... ate, slept, pooped and cried.  She said that yes, that's how babies with DS are... so cute... but when they reach about age 5, society just doesn't see them as cute anymore.  Society sees them as a burden (yes, she actually SAID that).

Will Josh be a burden?  Will he have a Shelly in his life?  Will Shelly celebrate Easter with him and then never see him again because she's not paid to do so?

I hope that Josh always has love in his life.  I hope that all of my kids all grow up to love and serve God and to love and be loved.  I hope they smile every day and, maybe more importantly, I hope they make others smile.

A friend posted this verse on her FB this morning and it couldn't have been more appropriate...

"I have told you these things so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world."  John 16:33


This world is cold and hard (and seems to be getting colder and harder every day), but God is bigger than this world.  God is bigger than Shelly. 

Oldies but goodies!

They sure do grow fast!

Love,
Susan

One of 'those' mornings...

You know the kind of morning I'm talking about right? 

The kind where everyone goes to bed late (dumb Superbowl) so everyone gets up late... so everyone is overtired and cranky... so everyone looses everything (or Josh hides it, as in our case)... so everyone is late... so mom is in a bad mood? 

Yeah... that kind.

But we got thru it unscathed.  We usually do.  Josh ended up locking himself in the bathroom (after he hid Caleb's phone, lost his lunch date with his speech therapist and wouldn't put his shoes on), which made us REALLY late.  I might have made him to go the car without his coat and I might have told him I didn't care if he was cold (hey, he's lucky I let him have the shoes).  Yeah, I'm mature.

This hiding everything has got to stop.  Caleb got so frustrated with Josh the other day for hiding his things that he told him he was going to hide Ms. Kellie on him (Ms. Kellie is his beloved 1 on 1 aide at school).  That worked, for the moment (yes, that's how much he adores Ms. Kellie... the thought of Caleb hiding her was surely more than he could handle). The moment was short, however.


You know how some kids just want attention and they don't care if it's negative attention?  My other kids all have been thru that stage... not really caring that it wasn't praises and happiness as long as we were speaking to them.  Well, I think that's what this is about.  I think Josh just wants attention.  I mean, what else can it be when he disappears for a moment, returning only to look you straight in the eyes and tell you he hid your phone?  Over and over we go thru this.  And over.

This morning was kinda the icing on the proverbial cake.  The cake wasn't very good tho, in fact... it was kinda stale and ready for the mulch pile.  That's how I feel about this whole past weekend... stale and ready for the mulch pile.  I'm glad it's Monday.

I spent most of the weekend sulking that Josh is 9 (almost 10!!!) and we can't hardly understand him.  That made me cranky.  There is nothing I can even do about it and yet I let it disrupt my peace (and clearly... the peace in my home). 

Speech is, and always has been, Josh's biggest area of struggle.  His receptive speech is totally great... he understands so much (way more than I give him credit for, I'm sure), but his expressive language just plain stinks. 

I have a challenge for you.  The next time you're at the grocery store, buy a bag of big marshmellows (they're cheap, don't worry).  Open the bag and stuff 2 of them in your mouth (3 or 4 if you have a mouth my size)... now try to talk.  Try to tell someone how your day was.  Try to ask for a drink or pencil or sweatshirt because you're cold.  Better yet... wait til you have to use the bathroom really badly and ask someone if you can go.  Remember, you can't leave your seat until they say yes, you may use the bathroom. 

How'd it go?

That's how life is for Josh on a daily basis.  There are very few sets of trained ears that can understand his speech.  Thankfully, he's fairly patient with us and adds gestures to his stories so we can pick up the gist of them.  It must be so frustrating for him... I know it's tiring and frustrating for me.

His speech is what separates him from his peers.  It's what makes him different.  It's what holds him back.  You're busy when you're 9 ya know... who has time to wait for Josh to get his words out and then decode them?  I mean... I barely have time... or patience to...

(okay, so this post was supposed to be about ME and how his lack of speech affects ME but, as I type, it's clearly turning into something God is using to show me what Josh goes thru... to teach me more patience, empathy, kindness... ***sigh***... I'm such an unfinished work).

Anyway...  let me tell a happy story.

Josh gave a testimony in church last night (he gives a testimony every time we go to church, and he calls out a song and he often goes right up front to sing it... and sometimes he even takes over the praying at the end of the service and does it himself...).

"Um, thank God, my hip hurt, I cried, and um, prayed, and um, feel bedda, my hip and my froat and my beddi feel bedda, and um, thank God Baby Dak in heaven, Jesus in heaven with Baby Dak and happy. I will go to heaven and see Baby Dak and be happy."

It was a beautiful testimony and we understood him.  Not just Abby and I, everyone understood him.  It was (I think) the first time that Abby didn't have to translate.  Then he called out the song "Are You Washed In the Blood" and clapped his little hands off (I often wonder what they think at school when he belts out that song??? hahahaha).

Jon and I were talking on the way home from church about how clear he spoke, but I was quick to add that it rarely happens like that and how I tire at having to figure things out all the time.  Jon... in his usual trying to get me to see the bright side of things manner... said there is good in it too, that lack of being able to understand what he says.

Obviously, he had to explain that statement.

He reminded me that, when Josh gets into trouble, he talks back.  He looks right at us, takes a tone and talks, fast and furiously, and we can't understand a thing.  He's telling us off you know.  He's totally telling us off.  And we can't understand a thing.

Jon calls it jibber-jabber... I call it disrespectful (and wish it wasn't so funny when he did it), but it always changes the direction of the situation.

Wow...see how God changed me... right in front of you?  I started typing today, all sulky and feeling sorry for myself, and now I feel better. 

Good therapy... this blog. 

Best therapy... listening to Him speak right to my heart. 

Oh, it's still hard.  Josh not being able to tell us how his day went or who he played with at recess... that he doesn't feel well or doesn't like asparagus... yeah, that's hard.  But we'll get thru it unscathed, just like this morning.  

And for what it's worth, I let him wear his coat to school.

12ish months

"more"

(learning to sign for more ice cream)

 

Love, 

Susan