Tuesday, January 29, 2013

I have decided...

Long time no post... life stinks sometimes.

So we are in the midst of a storm.  A big ol' messy storm.  I won't bore you with the details but suffice to say that some parts of parenting are absolutely no fun... and not for the weak at heart (which I am, unfortunately).  I love each of my babies more than Satan does tho and I won't let him have the control he so desires.  Nope.  No way.

That said... this morning on our way to school, Josh was riding 'middle shotgun' (no lectures please) in the Tahoe, playing football on his ipad and not listening (or understanding) a thing we were saying.

Or so I thought.

The conversation was not a fun one.  It was a tough one.  It was along the lines of standing up for what's right, being different in this big bad world, making tough (and good) choices, standing out from the crowd because you're not following the crowd... all those things we seem to repeat over and over (and over) and hope something sinks in to their teenaged minds.  (There are many details I'm leaving out for obvious reasons, but you get my drift).

They were all listening, sometimes giving examples of how they have tried, or how hard it actually IS to do what I'm asking of them (they forget I was there once and I totally wish I could tell them I didn't fail almost daily, was a stand out in the way of good choices and STILL was popular... because popular is what it's all about, you know... but I can't tell them that).

We were almost to the middle school (so that's about 8 to 10 minutes of conversation for those of you who aren't familiar with where on earth the middle school is in correlation with our home)... and... I kid you not... Joshua looked up from his ipad and began singing... I Have Decided To Follow Jesus.

 (Do you know the song?  It goes like this:
I have decided to follow Jesus... I have decided to follow Jesus... I have decided to follow Jesus... no turning back, no turning back.

Tho none go with me, I still will follow... tho none go with me, I still will follow, tho none go with me, I still will follow... no turning back, no turning back.

The world behind me, the cross before me... the world behind me, the cross before me... the world behind me, the cross before me... no turning back, no turning back.

Will you decide now, to follow Jesus?... will you decide now, to follow Jesus?... will you decide now, to follow Jesus?... no turning back, no turning back.)

We all just sorta looked at each other.  How fitting.  How appropriate.  How did he know?

And let it be known that I don't even remember the last time we sang that in church, OR at home, nor is it one of the hymns he typically belts out, nor did I even know he KNEW the song. 

Once again, God used Josh to ground us.  He gave Josh a song that spoke directly to us.  He reminded us, thru Josh, that He is bigger than all the things that this big bad world has to offer.  And He is able.

Some people say that those with Down Syndrome are more Christ-like than the rest of us.  I sometimes agree.

And THEN...on the way to HIS school, just Josh and I in the vehicle (just so you don't think I'm putting my son up WAY to high on that pedestal)... he begins whining.  Just like a little baby.

The conversation went like this:
Me:  Josh, stop whining.  Only babies whine.  Only little babies whine like that Josh.

Josh:  And me.

Me:  Josh, Daddy doesn't whine and Caleb and Jared don't whine... big boys don't whine, do they Josh?

Josh:  No mom (insert whine just for whine's sake).

Me:  Josh, you sound like a little baby.  Big boys don't whine.

Josh:  I do mom.

**sigh**

That's my boy... straight from somewhat sacred to severely sarcastic (and sinful) in a matter of minutes.  He's so... so... um... human.

 
 Christmas 2012

I encourage all of you parents out there... talk to your kids.  Things are going on at school (and elsewhere) that you can't even fathom.  Talk to them but then check up on them.  Don't trust them completely... they are kids.  They WILL make bad choices, do bad things, make bad mistakes.  They NEED us to check up on them, pick them up when they fall.  They need us to educate ourselves on what they hear, see, do... even at school where you think they are safe.  Love them more than the world does. 

Okay... jumping down from my soapbox and going to plan dinner...

Love,
Susan




Friday, January 25, 2013

No hugs today. Just lunch.

Josh had a lunch date with Lily today.  (Lily is a grade below Josh so she's at a different school, but they are still the best of friends.  Lily also has Down Syndrome... and will make a fabulous daughter in law some day). 

Usually when I drop him off, they hug.  They are genuinely happy to see each other, but they are also big huggers (arguably comes with the extra chromosome... more on that later). The last time they met for lunch, Josh ran right into her classroom (disrupting class) and swept her off her feet... literally.  He picked her right up and swung her.  She was TICKLED.  It looked almost like a scene from Gone With the Wind, her face shining with a big smile and her eyes trying to focus on him as he spun her. (okay, that's a bit of an exaggeration but I DID think about that, haha!).

No hugs today tho.  Just lunch. 


Josh was there to surprise Lily so the audience that had gathered to watch their reunion was expecting a lot of excitement... and hugs.  But we got neither.  It was pretty uneventful.  They just sat down and began to eat.  It was just lunch.  Just like all the other kids in the school at that very moment. 

Just like all the other kids in the school at that very moment.

They were just having lunch.  Friends.  Eating.  Telling stories.  Sometimes laughing, sometimes not.  Just like all the other kids in the school at that very moment.

I was kinda taken aback by that, obviously. 

On the one hand, I was really happy that he looked like every other kid.  I was happy that there was no tackling Lily to the ground to wrap his arms around her.  I was happy he wasn't inappropriately excited or acting like a silly monkey.  

But, on the other hand, Josh hugs everyone.  Even if they don't want to be hugged, Josh usually hugs them.  I'm okay with that most of the time (because 99.9% of people are really really fabulous about hugging back and being genuinely okay with it), but I DO realize it's probably not appropriate for ALL the time.  Like when he gets to middle school... and even now with kids his age... it's just not what kids do.  I have TRIED to stop him, but even the words coming out of my mouth don't sound right.  "Josh, don't hug". 

I mean really... don't hug?  Is there a stupider phrase?  Who doesn't need a hug?  Why do I even have to have this conversation with myself over and over?  Do I teach him not hug?  Or do I allow him to be himself.? Do I teach him to ask before he hugs someone?  It seems like that takes away from the spontaneous and fun FEELING of receiving (and giving) a hug.

I know there are many parents of kids (and adults) with Down Syndrome that disagree with me.  And that's okay.  I know, for your family, hugging total strangers is inappropriate. But I don't feel that way.  Isn't that okay too?

I don't know... I'm torn.  I know one thing.  I'm SO thankful for all the hugs he has given ME.  He has tackled ME to the ground and it was just what I needed.  He has, more than once, known that a hug is just what others needed too. 

Whoever thought I'd have to teach my kid to stop hugging too much.  Or too often.  Or too tightly.  Makes ya think, doesn't it? 

On a completely different subject... does anyone know?  Is hula hooping the new craze in exercise? 

There was a woman on my road a few minutes ago (a woman... not a girl, I thought you should know that) hula hooping her little heart out.  I mean... she WAS hula hooping.  Her arms were in the air or out to the side, twisting, looping... she was twirling and skipping as she hooped it up.  She looked like she was having a BALL.  It's COLD out there but she looked quite warm and happy.  She never even stopped the routine or looked embarrassed as we caught eyes (just for a brief second tho as she was mid-twirl when I drove by). 

I haven't ever seen her before so I thought maybe she picked our road to be discrete?  It didn't look like she cared WHO saw her tho.  She was in a whole different place.  After that work out... she's gonna need a hug!!!  

Christmas hugs & kisses!




Disclaimer:  I'm not making fun of that hula hooping gal... I'm just asking if it's the new thing.  It sure did look fun.  Maybe I should try that.  Nah... maybe not (my kids would literally lock me up if I did that... they would be horrified, even more so than when I show them I can still cheer lead in the kitchen). 

Have a great weekend!  Give someone a hug... you never know how much they might need it. 

Love,
Susan


Monday, January 21, 2013

Here we go again...

"It's just a phase".

***sigh***

Yes, I know it's just a phase... but another one?  Already? 

You see... Josh goes thru phases.  I'm not sure what else to call them.  They are usually long lived, usually impossible to stop and usually (okay, always) extremely annoying.

Let's see... we've had the (in no particular order of importance or annoyance) spitting phase, the biting nail phase, the shirt twisting phase, the licking everything phase, the saying "so" (or "so what" or spelling so) phase, the no shoe phase, the sticking his tongue out phase, the leaving the room (empty) and locking the door behind him phase, the grinding teeth phase, the calling everyone a "punk-head" phase, the pulling threads out of his socks phase, the pulling the threads out of the couch phase, the whining my name phase (mmooommm), the saying "no" to everything phase, the saying "yes" to everything phase....

And we've doubled up on phases... like the biting his nails just to make them jagged and THEN pulling the strings out of ALL of his socks phase... (his communication notebook would often read  "he had quite a pile of strings under his desk today"... I mean really?  why?) (not to mention the money we spent on NEW socks).

What's the new phase, you ask?  Well... it's the hiding anything and everything that means anything to anyone phase.  

Ipads, Ipods, laptop cases, cell phones, wrestling shoes, phones and computer chargers, homework, writing utensils, cooking utensils, eating utensils, socks, glasses (reading and drinking), notebooks, TV remotes, milk covers, x-box controllers...

We've been late for school, late for church and late for dinner.  We've missed calls and texts and TV shows.

If you open any drawer in my bedroom, at any time, on any given day, you can usually find a variety of items.  But sometimes it isn't as easy as my drawers... sometimes it's in closets (behind, under, inside the things that are supposed to live there), under the cushions or under the couch... under the mattress or under the bed... in the sugar canister or in the mulch pail (ewwwwww!!!).  We haven't found anything in the trash yet (there is a silver lining to every story).  They also say he doesn't do it at school (another piece of the silver lining).

Has he been disciplined?  Yes.  Has he lost important things to him?  Yes.  Has he learned a lesson?  No.  Nothing works.  N.O.T.H.I.N.G. 

He's a wee bit stubborn.

To be perfectly honest, all these phases wear me down.  I'm sure there is a lesson for ME in these phases (patience?), but they DO seriously wear me down.  Perhaps this current lesson is for the kids?  Don't leave your laptop case lying on the living room floor?  But, in their defense, they (and I) always try to put things out of reach... but this kid is good.  He's slick.  He's always one step ahead of us and we don't even know it.

To make matters worse, right now he's going thru an ornery phase too.  These come upon us regularly and happen in addition to the 'phase of the day/week/month/year'.  They make us sad and I think they make him sad.  He's downright grumpy.  He's not interested in playing with Abby (that's our clue that something is majorly wrong).  These ornery phases typically mean 1 of 2 things... an illness is brewing or a growth spurt is coming (hoping for the later of the 2).  


We'll get thru it.  We always do.  And then there will be another phase.  And we'll get thru that one too.  Because we always do. What choice do we have? 

***sigh***


"won't keep his shoes on phase"



"ornery phase"
anyone who knows Josh, knows something is wrong here...
it's written all over his face 


But, just like Jesus doesn't leave us or forsake us when WE go thru phases (and boy, do I ever go thru phases)... I keep reminding Josh that I love him to pieces, even on the bad/hard/sad/ornery/hiding my car keys days. 

Love,
Susan




Thursday, January 17, 2013

Dear New Mom...



This is going to be personal (and probably long)… a little look into my heart when I first found out that Josh had Down Syndrome.  To many of you, this may be a repeat of things I have talked about in the past, on facebook or someplace else… but you see, I have a new follower on my blog.  And she’s special.  

She’s special because she recently received a prenatal diagnosis of Down Syndrome.  She’s more than special… she’s downright lucky (I’ve used that word a lot lately and I don’t even believe in that word… she’s over the moon blessed, let’s put it that way).  

This is for her...


First, I know you’re overwhelmed.  I know your heart goes from being head over heels in love with your baby girl to being scared stiff.  I know your heart goes from feeling like this is okay, like you can do this… straight to approximately one million what if’s.  And then you build on the what if’s…

And that’s okay.  

No feeling that you are feeling is wrong or unacceptable or corny or bad or anything else negative that you can come up with.  They are JUST feelings.  You can’t help them so have them.  Talk with God about them.  He knows them, He knows you and He knows (and loves beyond all measure) that little girl growing inside you.  He blessed her with Down Syndrome.  I promise, it’s a blessing.

When I first held Josh, I knew.  Well, let’s be honest… I was sorta under the influence of pure happiness at just having given birth to another baby so my mind wasn’t 100% clear… but I DID know something was not quite right.  His eyes looked like he had Down Syndrome but I didn’t dare ask.  I waited for someone ELSE to mention it.  I didn’t want anyone to think I wouldn’t WANT him if he DID have Down Syndrome.  I didn’t want anyone to think I was prejudice or somehow had anything against Down Syndrome.   Yes, these thoughts did go racing thru my mind.  

After he had been taken off to the nursery (he also had a heart defect that we didn’t know about) so they could ‘stabilize’ him, and still nobody was saying anything about the way he looked, I finally asked my husband about it.  Then the nurse.  The nurse asked me why I thought he had DS and just the fact that she answered my question with another question made it real. 

I don’t think I grieved.  Everyone says that everyone grieves.  But, I don’t think I grieved.  I loved him from the start.  Not to say you don't love her if you grieve... again, no feeling or way of handling this is incorrect.  Everyone needs to find their own path.

I jumped right into ‘caregiver’ mode and wanted to make him better.  I researched and read and asked questions and did everything IN MY POWER to make it right.  He wasn’t wrong… nothing about Josh was wrong… but trying to come up with a solution to his breathing issues, his o2 saturation level issues, his feeding issues, his heart defect issues… well, that’s all I could do.  It gave me a purpose in an otherwise helpless situation. 

You might be scared and confused and overwhelmed with all the information out there, but that baby just needs love (and lots and lots of snuggles).  If we had never had a day of physical, occupational, developmental or speech therapy, I honestly think Josh would be the very same (great) kid he is today.  That’s not to say don’t do therapy… not at all… that’s just to say that she will learn at her very own pace… and that’s okay.  It’s better than okay.  You’ll learn to celebrate her very own pace (and by celebrate I mean… be prepared because you’ll find yourself clapping and dancing and singing over the smallest achievements, you’ll act sillier than you have ever acted and you’ll learn… don’t sweat the small stuff). 
 
Josh has changed me.  God has used Down Syndrome in my life to make me a different person.  More patient (okay people, stop laughing… I’m a work in progress and patience seems to come a little slower than other things have), more accepting, kinder, simpler and, most importantly, closer to God.  I wouldn’t want to go a day without Him.

Josh makes us laugh and cry.  He makes me giggle and want to bang my head against a wall.  He’s incredibly stubborn (comes with the extra chromosome, I’m sorry to give you that news but it’s best to be prepared, lol) and incredibly smart (when he’s not being stubborn).  He brings out the best in people.  He doesn’t hold a grudge (when he’s not being stubborn) and he loves to make people laugh.  He likes to get his own way and… yes… I may or may not allow that to happen a little too often.  

He has captured hearts.  Your daughter will capture hearts.  She will be more popular than you can even imagine.  She will light up rooms.  She will cause people to stare (and yes, sometimes in a bad way but who cares about them?) because she’s cute, funny, entertaining and… stubborn (or persistent if you prefer to use that term).  You can not be a ‘wall flower’ because her presence will demand attention.  It’s just the way it is.

Are there going to be hard days?  Of course there are.  As with any human being… life is not easy.  There are ups and downs and all arounds.  That’s why God picked you to be her mom… He knows full well that you can handle it.  You can guide her, help her, love her, pick her up when she falls.  He hand-picked the perfect mommy just for her… that’s how much He loves her (and you!!).  

Lots of people will tell you that… that God gives special kids to special parents (I’m sure you’ve heard it a time or 2 or 350 already)… well, I’m here to say that there is nothing special about me.  I’m just a mom, a regular mom who loves her kids.  But I DO know that God picked me for Josh.  I have questioned His decision more than I want to admit, but that doesn’t change the fact that I know it’s true.  

There are 2 bits of advice I’d like to give and then I’ll end this long winded post… 

1.       People say stupid things.  That doesn’t mean the person is stupid, it just means that, most times, they don’t know what to say.  After she’s born, even your doctors and nurses will say things like “she doesn’t look like she has Down Syndrome” or “it must not be an awful case of Down Syndrome because she doesn’t even look it” (like looking like she has Down Syndrome is bad, right?).  Just be kind, answer kindly because you need them.  You need all the support you can muster up and they don’t know any better.  They aren’t educated and that’s okay… you weren’t either before this.  Educate them… nicely. 

2.   Take one day at a time.  The best nurse on the planet gave me that advice when Josh was born.  She reminded me that there’s no use in worrying about the future because it’s not here yet.  She reminded me that even if he does have crooked teeth and coke-bottle glasses (bearing my heart here as those WERE things I was worried about), that I’ll still love him.  And I do… he HAS crooked teeth but he won’t WEAR his glasses… and I still love him.  Don’t worry about therapy and school and friendships right now… there is plenty of time to worry about that stuff.  Just enjoy the remainder of your pregnancy and then her… and give her kisses from me and all the other mommies who know and understand what a true blessing she is… all the other mommies who get experience Down Syndrome up close and personal.  We ARE super-duper, incredibly blessed.  
This picture is one of my all-time favorites.
A sweet friend of mine saw it and her words helped me thru a tough time...
 "Yes, that road is curvy, bumpy and going uphill... but ohhhh... look at the view".
(you can't really tell from this little picture but the view was the ocean, and mountains, and sun... beyond those trees the view was amazingly awesome)
Perfect!

Love,
Susan

Wednesday, January 16, 2013

Top 20...

Tonight's post is my top 20 list.  It's the top 20 things I thought about as I was cleaning today.

Admit it... you're psyched.  (hahahahaha... you'll quickly learn that it doesn't take an awful lot to amuse me).

1.  Everyone has dirt.  Everyone's home gets dirty and it's the same kind of dirt that I have in my very own home.  Teachers, medical professionals, stay at home moms... doesn't matter, it's still dirt.

2.  I miss my mom.  I need to plan a visit soon.

3.  Snow is beautiful.  It always reminds me of God because the ground is so icky dirty (like my heart) and then it snows (God) and is covered in beauty again.

4.  Long haired dogs shed... a LOT. 

5.  Stainless steal appliances aren't all they are cracked up to be (if anyone has any great tips for cleaning them, I'm all ears).  I'll take my mismatched black and white ones any day of the week.

6.  If the government furloughs my husband the 22 days they are threatening... we're in trouble.

7.  Josh's hip probably needs to be looked at... and soon (it clunks all the time and the complaints are more often)... UGH.

8.  I hope none of the families I clean for call me 'the cleaning lady'.  The term lady sounds so old... and lame (probably like I'm feeling right now).  I'd rather be called... um... Susan.

9.  I never thought I'd BE a cleaning lady.......

10.  I love wide pine board floors.  Sure, they are rustic and look old and are hard to clean... but nothing speaks of 'early American coziness' quite like they do.

11.  Mr. Clean Magic Erasers... every home needs them. 

12.  It's much easier to organize clutter for someone else.

13.  Electrolux vacuums rock!!  I have one, my mom has one and the family I cleaned for today has one... I seriously love Electrolux vacuums. 

14.  I think I vacuumed up a very large quantity of wood pellets today.  And the more I think about it, the worse I feel.  I thought they were something that the dog(s) had gotten into.  They probably could have started a fire with them.  Yes, it was that many. 

15.  Cleaning floors on snowy days with long haired dogs does not allow said floors to stay clean very long. 

16.  The purple Windex smells SO good.

17.  I'm tired.

18.  I'm really tired.

19.  Josh makes me laugh... even when he's being naughty (and that's a problem because he knows he makes me laugh even when he's being naughty).

20.  I miss my mom.

Hope you all had such interesting things occupying your minds today too.


Me & mom 
(and the Thanksgiving turkey)
Sorry it's so large... I'll figure it out someday, just not today.

Love,
Susan

Tuesday, January 15, 2013

Joy...

I love that little 3-letter word... JOY.  Isn't it a happy word?  Doesn't it just conjure up warm feelings of contentedness?  It does for me.

I don't think I'm what you'd call an overly joyful person, altho I'd like to be.  I consider my sister in law a joyful person.  Her smile is beautiful and she makes you feel good... by smiling (she says she gets it from her dad... the smile... and her sisters all have it too... so lucky!!).  I watch her sometimes, from across the room, trying to learn how she naturally causes people to feel comfortable.  When someone snaps a picture of her, her smile is lovely.  Natural.  Me?  Not so much...

I'm a work in progress.

Sometimes the everydayness of life steals our joy.  Romans 12:12 tells us to be joyful in hope, patient in affliction and faithful in prayer.  And I do try my best to do just that.  But sometimes... the everydayness of life steals our joy.

I know it's possible to be joyful... even in affliction... because I have seen it.  I have even felt it.  I remember soon after Josh was born and he and I were spending all our days together... in the hospital.  I wonder how many hundreds of times I sang "He's got the whole world in His hands... He's got the doctors and the nurses in His hands... He's got the medicines and the machines in His hands"?  I sang it a lot.  And I believed it.  I knew that God had us in the palm of His hand.  I felt peace... and yes, even joy... in the midst of the chaos called Boston Children's Hospital.

I used to tell people I thought it was because I was there with him constantly and others weren't.  They worried about him (and me!) but  I got to see him smile and talk and sleep and eat.  I got to snuggle him (and let me tell you, that was no easy task given all the wires and tubes and STUFF attached to his little body)... and sing to him.  We took long walks in the little red wagon, IV pole, monitors and sometimes even spectators in tow.  It was a joyful time (and yes, I know that sounds utterly ridiculous that watching my son fight for his life was a joyful time… but it was). And it wasn't because I was with him all the time... it was because God allowed me to be joyful (and patient) in affliction.

So fast forward a few years and a LOT of water has gone under the (proverbial) bridge.  Fast moving water.  Deep, sometimes frigidly cold water.  We have swam in that water.  Fished and played in that water.  That water has kept us hydrated.  We have even thrown stones into that water and watched the ripples affect the ripples.  That water is what makes us who we are today… (corny enough for you?).  But really… everything we have gone thru and endured… well, we made it (are making it).  It’s not always easy and often times the everydayness of life steals our joy, if we let it.  

I was thinking today (scary, I know)…. the big things we have gone thru as a family are just little things to other families.  Their days have been darker than ours.  And our little things?  Well… those might be really really huge issues to someone else.  We all have our issues, don’t we?  And we all seem to judge others for the way they handle theirs, don’t we? 

The first verse to a favorite hymn…

Day by day, and with each passing moment,
Strength I find, to meet my trials here;
Trusting in my Father’s wise bestowment,
I’ve no cause for worry or for fear.
He Whose heart is kind beyond all measure
Gives unto each day what He deems best—
Lovingly, its part of pain and pleasure,
Mingling toil with peace and rest.

A few years back I watched a dear friend die of cancer but OHHH the joy in her heart was contagious. Doctors and nurses asked her about it but, most importantly to her… her own husband was affected.  She told me when she was first diagnosed that if this is what it would take to bring her husband to faith, then it would be worth it.  As far as I know, (unfortunately and sadly for us left behind), that’s what it took.  I haven’t spoken to her husband in years but, the last time I did, he was walking closely with God… the best he knew how. 

Amazing.  

I remember one of my conversations with her just before she died … she had lost her vision, couldn’t eat, was in terrible pain around the clock… and she asked me to pray that her husband would find a wife quickly.  

I told you… amazing.  

I have prayed the same prayer… whatever it takes Lord… whatever it takes.  But, I’m not sure I mean it.  Suffering is no fun.  Pain is no fun.  Watching our kids go thru hard times is no fun.  But we can rest assured that… “weeping may tarry for the night, but joy comes in the morning.”

We are, right this very moment, experiencing some weeping… questions as to why Josh’s hip surgery failed and why he has to have daily pain, why Caleb’s shoulder isn’t strengthening up the way it should be (why is that thing STILL slipping out??), why Jared’s body makes him feel like he’s 93 instead of 13 (everyday!), why…why… why (and anyone that knows our kid’s history with injuries, knows I’m leaving quite a bit out, lol)???  But… there’s joy here too.  Joy in knowing that God has Josh’s hip, Caleb’s shoulder, Jared’s aches and pains... and all our other (big and little) concerns in His hands.

Because… He’s got the whole world in His hands.  


I read a quote today that perfectly sums up the point I'm trying to make here...

You have no idea how God, in His greatness and love, is going to use what He is taking you through now to mature you and bring you out on the other side. Sometimes we haven't a clue "where this is gonna lead," but I can tell you from experience, if God is in it, there are reasons far greater than the dream you have for your own life.

Every period of life has a purpose: Sometimes it's just to endure. Other times it's to thrive. And others are given to grow. But you can be sure, our great God knows the difference, is with us in all of them, and is not making a mistake about anything. - Luci Swindoll




Just some joyful (okay, just plain silly) pictures... 





 
Joyfully,
Susan

Friday, January 11, 2013

I'm sorry...

Why are those 2 little words so difficult to say? 

Jon and I had a squabble last night.  You know, the kind where dumb stuff just flies from your mouth and you know it's dumb right when you're saying it but you still keep talking?  Yeah... that kind.  I think my words were something about him caring way more for one kid than another.  I think I told him to get a grip and then I think I told him he wasn't mature (yes, I do see the irony here thank you).

All of those things were ridiculous and none of those things should have been said.  He actually smiled at me at one point, which usually doesn't help when we are in the thick of things and it didn't help last night either. 

But then the evening took over, homework had to be done, dinner made, Jared had wrestling, Abby didn't feel well... the usual... and the little tiff kinda got forgotten.  Until Jon gently reminded me later that I needed to apologize to him.  ***sigh***

I did as requested (shouldn't have had to be requested) but I'm pretty sure it wasn't heart felt or sincere and I'm pretty sure he knew it wasn't heart felt or sincere. 

Fast forward to this morning at 6:40.  We have to leave the house by 7 to get the big kids to school on time and Abby has already gotten a few late slips (her excuse to them was that her brother has Down Syndrome but that wasn't really enough for them... they don't know her brother).  Anyway... Josh was still sleeping.

Abby tried to gently wake him but he wasn't having anything to do with crawling out of the covers.  I finally had to yell (and yes, I know yelling isn't the answer).  When we finally got his shoes and coat on, he wanted me to carry him.  He's 85 lbs. of pure heaviness... I can NOT carry him.  Jared and Abby both offered but he wanted me.  He had JUST been woken out of a dead sleep, was cold, was being told to hurry up and his feet were being stuffed into shoes... and he wanted his mother.  Go figure.  I finally had to yell (and yes, I know that yelling isn't the answer).  He began to pout and we all left the house to wait for him to make a good choice... in the car (are you feeling as bad as me yet?  poor josh...).

A minute or so passed with Caleb telling me I'm too easy on him and Abby telling Caleb that he needs to be quiet... when Abby finally went back in to see if he was okay.  He was crying by this time... all out tears and sobs.  Poor Josh.  She lured him to the car with promises of his favorite game after school and off we went. 

After coming back home, as I served him his breakfast, he looked me right square in the eye and said "I'm sorry mom".  I probably looked confused when I asked him what he was sorry for, but the whole unfortunate episode of 30 minutes prior was gone from my mind.  He said "I'm sorry mom, carry me, I not come outside, I'm sorry mom."  He held his arms out straight to the side and gave me the biggest hug ever. 

That kid... he puts me to shame every time. 

And, for what it's worth... I texted Jon a heart felt and sincere apology. 


And I apologized to Josh (because he should NOT have been yelled at and his mother needs to learn to be more patient... end of story).
 

On a happier note... Caleb received the honor of being chosen student of the month for November and December!

(please don't ask why he didn't find out until January and why it was for 2 months...who am I to question Noble High School?)

I'm sure the same note goes home to each family that's son or daughter gets chosen, but it sure does make you feel good.  It talked about how he has made a significant contribution to the life of the school through academics, leadership or service.  

(i'm only slightly amused that he wasn't even THERE in December because of his shoulder surgery... but who am I to question Noble High School?)

I remember when he was in kindergarten and Mrs. Hunt did a 'student of the month' bulletin board and I was proud then.  She gave everyone a month, but it still felt special to have him recognized.  Well, this feels even MORE special.  

We are very proud of Caleb and all that he is accomplishing.  He has had some physical setbacks in terms of playing sports, but he doesn't ever complain about any of that.  I complain and question, he just seems to have a quiet trust in God's plan for his life.  I admire him. 




CONGRATULATIONS Caleb!  
We love you!

And on an even happier note... my husband just responded to my text with a request for a date tonight!!  Awww...

Love,
Susan

Thursday, January 10, 2013

Lucky...

So Abby said... "mom, what do you do all day anyway?"

My response (after I got over being offended that it wasn't obvious) was "cook the meals, clean the kitchen, clean bathrooms, wash the floors, wash the clothes, fold the clothes, vacuum, dust, organize, meal plan, bake, run kids here and there, keep track of appointments, clean for others, bake for others, wash windows......"

I think I might have named 20 more things in my rant in which I didn't take a single breath.

And Abby answered "you're so lucky!!!" 

Hmmmm... so how come I don't usually FEEL lucky?  I had to ponder that for quite some time.  I'm still pondering.  Oh, don't get me wrong, I DO realize how fortunate I am to be able to stay at home.  I know that many moms do what I do every AND go to work outside the home (you have my utmost respect and honor because I KNOW that I would be looney... loonier than I currently am).  I know that many moms would give their right arms to be able to be at home with their little ones.  But mine aren't little anymore... should I still be here?  Or should I be out pursuing a career?  Making money?  Becoming someone?

The Lord knows we need the extra income.

But, if I was working, I wouldn't have heard the story about Abby's science teacher today... and then take her temperature because she's not feeling well.  I wouldn't have heard about what happened in Caleb's math class.  I wouldn't have been able to get them a snack and listen to their rambling.  I wouldn't have been able to stand on the stairs and watch Josh get off the bus... and hear him shout up the (long) driveway "hi mom, good day mom, homework tonight mom". I would have missed out.  And we can't have today back.

Yes, some days are (very) hum-drum and yes, I do feel like I do the same chores over and over (and over)... but being here is important.  When they were little it so busy (and loud) in our home.  They PHYSICALLY needed me.  I was tired.  They made messes, ate a lot and someone always needed their diaper changed or nose wiped (I would give MY right arm to have that time back again).

Now that they are older tho, I think it's important to be here for them on a different level.  I don't have to wipe their noses anymore (altho, I do still remind them occasionally), but I do have to wipe their tears sometimes... and that's important too.  And they count on me.  They know they can have a friend over after school without asking.  They know that if they feel sick, they can call me and I'll grab them.  They know that if they forget their homework, I'll bring it. I'm not sure they appreciate me yet... but I do know they count on me.

My mother in law is a beautiful example of what I want to be when I grow up.  You can stop in at any time of day and it smells good.  There are either cookies (or her famous yeast rolls) on the table cooling or something simmering on the stove.  The music is usually up loud and she's singing and it's always warm... her home is always warm and inviting.  And we can count on her.  She will drop anything and pick my sick kid up at school, make them comfortable on her couch and feed them whatever sounds good to them.  Or, when I forget Josh has a half day, she will get him for me when the school can't even get a hold of me (that may or may not have happened more than once). She's a stay at home grandmother... and a good one at that.  That's what I want to be too.

So where am I going with this?  I'm not sure.  I guess maybe I just needed to type this all out to remind myself that it matters.  Or perhaps I'm trying to convince you that it matters (unfortunately,  even at age 43, what others think is still WAY too important to me... and we all know there are plenty of people who don't see the worth in being a stay at home mom). I'm thankful Abby made the comment the other day because it has given me something to thing about.  To pray about.  I want to be right in the center of God's will... and right now I believe that is at home.  I AM lucky...thankyouverymuch.


As busy as this time was... I would love to go back and have a re-do.  
I'd certainly take time to laugh more.  
Even in the chaos...


 and mess...


of life.


Love, 
Susan






Tuesday, January 8, 2013

Already there...




This song has been stuck in my head for several days now.  Do you know it?  Already There by Casting Crowns?  Maybe it's old(ish)... I listen to the radio only in the car.  Otherwise, I only listen to live music (read:  Josh belting out hymns ALL the time).

The lyrics talk about how God is already at the end of my life.  While I'm here wondering what's gonna happen, how will it all turn out, what will my kids do with their lives, who will they marry (and when), how will we pay the bills this month, what can I make for dinner, will Josh make it thru the day at school... He already knows.  I fret.  He knows.  He's already there.

My favorite verse is...
From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan


All this chaos... it's a masterpiece.  His perfect plan for my life.

So today, I had to clean for someone new (always stressful when it's someone new but she loved it, made it all worthwhile),  Jared was home with a migraine (gets auras and awful pain, like father like son, lovely!), Caleb's shoulder felt like it was slipping (just had surgery so it would NOT dislocate/fall out) and he was in quite a lot of pain, Josh was having a rough day at school, I've been sick since Saturday... but then I heard this song.  It was kinda like God giving me a thumbs up...




Why worry, fret, fear, stress?  He's already there.  Please remind me of this as needed.


And... if you don't know the song, I encourage you to look it up on youtube. I haven't quite figured out how to share links successfully here. (I also haven't figured out how to size pictures, can you tell?)

Have a great night.

Love,
Susan

(Disclaimer:  I am not, in any way, saying that Josh is "God-like" when I attached a photo of him under the comment about God giving me a thumbs up.  It's just a fun picture, seemed appropriate.)




Saturday, January 5, 2013

The name...

So I've been thinking about blogging for a little while but honestly didn't think anything I had to say might be worthwhile (I still don't).  I finally decided to jump in for several reasons, all of which were nicely outlined in my very first post (but it got eaten up by the great unknown and I can't remember all that it said).  Probably the biggest reason for my blogging tho is completely selfish, it's to help me remember. 

I have no memory.

My 86 year old mother remembers things much more clearly than I do.  She often reminds me of details.  Sometimes I just nod and act like I remember, simply because I can't believe I've lost something else.  I do have memories... scents, songs, sayings... sometimes those will jog the ones I have... but overall, my memory stinks.  It makes me very sad. 

The kids often ask me "don't you remember when...?"  I always respond... no.  I wish I did.  I'm thankful that we have LOTS of pictures and LOTS of videotapes from when they were little, because otherwise it would all be a blur.  I sometimes spend hours watching those tapes.  They are priceless.

Everyone says it's because I'm busy.  I have a lot on my mind, on my plate.  But I think that's just their way of trying to make me feel better.  Truth be told, I am slightly concerned about it (okay, more than slightly).  I turned on the water in the sink the other day so I could do the dishes.  I walked away and... you guessed it... forgot.  It's things like that.  Scary huh?

The good things, the bad things, the ugly things.  I want to remember everything and I think that writing it down will help me.  I hope...

So it needed a name, the blog.  Everyone has such cute names, catchy, play on words, original, sweet, memorable.  But all I could come up with is "It is what it is...".  That completely explains our lives, but it wasn't all that catchy, or memorable.  I asked around and enlisted the help of some friends.  I told them I wanted the blog to be about life, mostly (but not solely) about Down Syndrome, how DS affects our family... and God.  Many of them had fabulous ideas... but one of them named it for me.  She said "well, you're always saying how you wouldn't change Josh for anything, that he's perfect just the way he is... so how about Wonderfully Made"? 

Does she know me or what?

I believe that Josh IS wonderfully made.  Perfectly and wonderfully made.  He was created within my womb with an extra chromosome.  Yes!  Created like that!  The Maker of the whole entire universe saw fit to bless MY son with a little something extra.  Wonderful.

Wonderfully made.

Of course I believe all of my kids were made wonderfully.  Created with each their own personalities, quirks, brains (and lack there of sometimes).  Jon and I were just talking the other day about how different Caleb and Jared are.  I don't think 2 kids that came from the same 2 parents could BE any different.  Caleb is quiet, compliant, unsure of himself in many ways and happy to be alone.  Jared is loud(ish), questions E.V.E.R.Y.thing (which WILL be the death of me) and so sure of himself it scares me.  He also loves being with his friends and isn't afraid to be the talker in the bunch.  Both of them are great kids (for the most part... none of us are perfect)... just very very different.  Abby is a nice (and not so nice sometimes) mix of each of them.  She has traits from each of them and lends herself to whichever brother is being nice to her at the time.  But yes... all of them were wonderfully made.

For you created my inmost being; you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  Psalm 139:13-14

Wonderfully made.  Perfect.


I picked this picture for this post because it was the first "all of 'em" picture ever taken.  Josh was about 3 weeks old and had only been home from the hospital for about 2 days.  It was Easter Sunday.  Aren't they perfect?  Not!!  haha!!

Love, Susan