Sunday, April 21, 2013

What a difference a day (and a year) makes...

Yesterday, I think it's safe to say, I was feeling melancholy.  Almost mournful of what God has blessed me with.  I was thinking only of myself when I blogged about Josh and the reality that he might live with us for longer than the others.  Or forever. 

But this afternoon at the baseball field changed all of that. 

Last spring, Josh played baseball for a Challenger League, which means it was all kids with special needs.  Their needs varied... some in wheelchairs, some screaming uncontrollably... but a greater number of them with smiles than with not.  Every week I would put on a smile and act like I was enjoying every moment...

Oh, don't get me wrong... I was quite fond of watching the kids and being outside and visiting with "fellow parents who get it"... but a large part of me wished that he was playing in our little community with kids that he goes to school with.  A large part of me wished that Josh didn't need a 'buddy' going up to bat with him, running the bases with him, keeping him on task in the field.  A large part of me wished we didn't need a special needs team.  

The feelings I was having were strange.  I knew they were there but I wasn't giving them attention out loud.  I never discussed them with Jon or thought about it before or after the Sunday game. They didn't consume me, but they were responsible for me missing out. 

I'm not sure what happened this year, or today... but it was very different.  The kids and the needs and the parents were the same, but I was different. 

I was able to take in the smiles for real.  I was able to appreciate (and be amazed at) each part of the afternoon.  The boy in a wheelchair who insisted on standing to bat and walking to 1st base... then second.  The patience of the volunteer that walked him there.  The proud mommy taking video of her little boy who ran from bat to second to first to outfield without as much of an inclination that it wasn't the way to go.  The teen-aged (handsome and athletic) volunteer who made real friends with the boy he was 'assigned' to... real high fives, real hugs, real encouragement, real smiles, real friends. 

Last year (and yesterday) my glass was half empty.  Today, it overfloweth.


A few photos from last season...


Need a hand, friend?



 Josh's friend Damien and his buddy... Abby.  


  One of many... stars!

Josh loves to catch (but his bad hip hates the position).



So what was my part of the day?  Josh said "great game" no less than 50 times on the ride home!  

He loves it.  He loves every part.  It doesn't matter that he's only up to bat twice.  It doesn't matter that he only gets to run to 1st base every time or that he has a 'buddy' (this year it's Abby so he's thrilled!) running with him.  It doesn't matter that they play the same team every week or that there is no score keeping.  What matters is baseball... and smiles.  

Perhaps the most amazing part of the afternoon tho was the realization that I had changed when I didn't even realize I needed to.  

So thankful to the God who changes.

Love,
Susan






Saturday, April 20, 2013

Sneak peek into the future...

As I sit here on a cloudy and kinda somber Saturday afternoon, fresh cup of coffee in hand, and listen... I don't hear anything.  It's silent.  Completely.  I love the quiet, but this silence finds me with a little lump in my throat.

As I turn a little to my right, I catch a glimpse of Josh outside chasing the chickens... top speed... screaming at them to see how fast they can run.  Jon is tinkering on the boat, stopping every now and then to make sure he knows where Josh is and sometimes conversing with him (read:  yelling at him to stop terrorizing the chickens). 

Abby is off with a friend and the boys are with their cousins.  Today, it's just the three of us.

When Josh was first born, one of my (very selfish) first thoughts was that Jon and I would never be just the two of us.  It would always be the three of us... me, Jon and Josh... it felt like forever.  

Another thought that took up residence in my heart was this... I hoped Josh was 'bad' enough that he didn't realize he was being left out of things... like when his siblings were off with their friends.

(By "bad enough" I obviously hoped he was affected enough by his Down Syndrome that he wouldn't realize the happenings around him, or be bothered by them.  How awful is that?  Honest, but awful.)


Well, he's not 'bad' enough.  In fact, he completely loathes when his siblings are anywhere but here at home with him.

"Where's Abby?  What time home?"
"Where'd Jared go?  What time is he be home?"
"Where is Caleb go?  What time he be home? "

Over and over.

And it's just beginning... his brothers and sister are just now starting to be off doing things with their friends a lot.  They are at the age when being at home with us is kinda boring (altho, they are homebodies at heart so they never leave for long). 

And it's just beginning... Josh notices (and dislikes) that they are not here, that he can't go with them, hasn't been invited, isn't getting phone calls and wonders (out loud and very often) why he can't go.

And it's just beginning... it's just the three of us... me, Jon and Josh.

With everything in me I know that just the three of us is okay.  Even wonderful. With everything in me I wouldn't change one little chromosome of those that make up Josh. Not one.

But...

I'd be lying if I didn't say it doesn't trample my heart sometimes.

He loves spending time with his dad (me?  not so much, dad is always the fun one).  And, truth be told, I think perhaps Jon loves it more than Josh because he gets to act like a kid... he jumps like a superhero, sings with no thought (or care) to who's listening, and all too often chases chickens alongsideJosh.  All of that is swell.

But...

I don't know.  Sometimes it just feels like forever.  I guess this is one of those days. 


me, Jon and Josh 
(taking pics to amuse him after hip surgery, 2010)



 feeding the ducks... just the two of them



oldie... but his smile here always makes ME smile 


Disclaimer (why do I always feel the need to explain myself?):  I fully understand that it may not be just the three of us forever.  I fully understand that Josh might even get married, live on his own, etc.  I'm not holding him back or making assumptions about his future based upon his diagnosis. But, I am a realist.  I'm okay if none of that happens.  If he leaves our nest empty then I will celebrate with him and for him.  If it's just the three of us... then that's okay too.  We sure will do a lot of laughing.  Together.

All that said and my coffee is no longer fresh and I hear fireworks outside.  Told you Jon loves having him around... gives him an excuse to play with matches.  

Love,
Susan






  

Saturday, April 13, 2013

April 13th...


I wish I could come here to report that I was 100% successful in not complaining to or about my husband for the entire 30 day challenge.  But instead, I'm just coming here to report.

I'm fairly good at not complaining ABOUT my husband unless it's TO my husband tho... does that count for anything?  At least I didn't complain about him to OTHERS... right?  That MUST count for something.

The first 15 days were a complete success.  I was in awe of so many things... myself, our marriage, the way my husband was complimenting me and enjoying our marriage, but mostly the way God was at work. Then life seemed to happen overnight and I was right back to 'normal'.

So yeah... I'm a work in progress for sure.

Wanna hear something great tho?  Jon asked me if I wanted to start over and we could BOTH do the challenge.  How cool is that?  That's totally nothing I would expect from him.  I think we might try it.

I'm thankful for my husband and the marriage we have.  We fight, argue, bicker, call names sometimes (me, not him), mock sometimes (him, not me) but we also love, support, encourage and make each other laugh.  Really now... isn't that what life (and love) is all about?

Up, down, up down...

Josh's birth was probably the most tumultuous time in our marriage (not FOR our marriage but IN our marriage).  It was that way because of the unknown.  We didn't know if Josh would live to see his first birthday.  We were busy, scared, overwhelmed and exhausted.  We had NO idea how to raise a child with special and medical needs.  Truth be told, we had (still have) no idea how to raise ANY child.  And that's where God comes in...

That time grew us like none other.  Isn't that just like God to take something scary and unsettling and just plain hard and turn it into something beautiful, memorable and even worthy of praises?  I remember the first week in Boston... not being able to hold Josh because he had wires and tubes exiting every orifice and taped in odd places.  He slept around the clock, never cried, wouldn't eat, his skin was an odd shade of yellow and blue mottled together and those dumb alarms kept us awake 24/7.  We certainly had our breakdowns THAT week.

But, the great big wonderful God that we serve saw to it that we never EVER broke down together. Not once.

I would spend an hour curled up in the corner in that cold, hard, plastic chair, sobbing, over-thinking things and stressing out like it was nobody's business... while Jon would stand and sing to Josh, encourage me with a hug, eat, talk with nurses, tell Josh stories about his siblings... then we'd switch places.  Jon would sink and become quiet, even sulk, while I smiled, chatted with Josh, ate, called relatives.  We recognized it right away... we thanked God that when one was weak, the other was amazingly okay.  It went on like that for days.

Up, down, up, down... 

And it's still going on like that, it seems.  Up, down, up, down... twisting, turning, running fast, slowing down, jumping over obstacles, tripping and falling... constant movement... happy, sad, frustrated, glorious and a whole lot of being right in the middle and feeling not much of anything at all...

There is no one better suited for me, no one I'd rather travel the ups and downs of life with, no one I'd rather laugh and love with... the one God introduced me to and allowed me to fall in love with... the ONLY one who could ever be as patient as needed with me... my best friend...

(is this sappy enough yet to make up for the 2nd half of the month when I didn't hold to my end of the no complaining bargain???)...

I love you, Jon (and I mean every word).

 Repeat photo but one of his favorites...

I'll keep you all posted if we try the challenge together.  I know you'll all be sitting on the edge of your seats in anticipation, hahahaha! 


Love,
Susan


Tuesday, April 2, 2013

Days 17, 18, 19, 20 and 21...

"Help, I've fallen and I can't get up"... said me on Saturday morning as I fell hard off the no-complaining train.

For those of you wondering if I'm perfect (hahahahaha... just humor me here), let me assure you that I have proven (once again) that I am not.  Not even close.  Not even in the same area code as close.

Don't mind me while I blame hormones (stupid hormones).  I can't think of anything else to blame so that's my story and I'm stickin' to it. 

(Actually tho, I know in my heart that hormones are something we deal with but the way we react to them is completely up to us.) 

Sigh...

So finally this morning, with Jon having had enough, he (not so gently) reminded me that I blew this challenge.

Sigh...

Alrighty then, pray, get up, pick up the pieces, brush off, apologize and move on.

I decided to read the challenge for the days I missed and do them all today... because Jon deserves it... and it's good for my heart to give thanks and praise.

Day 17:  Vision for our home... I don't know that we have ever officially spoken about having a vision for our home and family, but we have discussed what we hope for.  We hope for our kids to grow up to love and serve God and others.  We hope for their happiness but, even more than that, we hope for them to be close to Him (knowing that sometimes it's downright hard stuff to follow the Lord).  We hope for it, we pray for it, we trust God to bring it to fruition.

Day 18:  Joyfulness... Is Jon joyful?  Well, just like everyone else, he has his days.  It is MORE typical for him to be joyful than not tho.  He's funny.  He's really funny... but he also knows that there is a time and place for it.  I often tell him I'm glad our kids have him because this house would be awfully somber, sober, not funny, no fun. 

Day 19:  Admire physically... I laughed out loud when I read this one today because, well, because I just told him at dinner that I would love him even if he didn't have any teeth in his head.  You see, he visited the dentist today for $500 worth of work and left there needing $2,000 more.  I think toothless is quite attractive, don't you?

Day 20:  Forgiving... Jon does not let the sun go down on his anger (no, he's not perfect but he doesn't hold a grudge for long).  We can spat and 20 minutes later he's trying to make me laugh.  I need a little more time than that, thankyouverymuch. 

Day 21:  Materialistic... let's just say we're both a work in progress. We have come far (just ask my high school friends), but have far to go.  


 Silly and sweet...




So onward I go... 

Love,
Susan