Monday, February 25, 2013

"Post-vacation depression"...

Remember that feeling when you were first alone at home with your new baby?  The company had gone, the excitement had diminished and your husband had to go back to work?  For me that feeling was overwhelming, probably much like post partum depression... an empty stomach, empty heart, dark, long day ahead kinda feelin'...unsettled and lacking in peace. 

Well, my babies are grown but I still get that very same feeling... whenever vacation is over.

It's not that we had a fabulous, extra special, super fun February vacation either because we didn't.  We spent a lot of time right here at home.  We spent a lot of time doing pretty much nothing... but we were together.  Safe.

Dropping them off each day at the doorway of life is hard.  It was hard when they were little and it's even harder now.  I love having them home... even when they fight, bicker, complain, roll their eyes and say they are bored... they are here.  Safe. 

Even when I act all put out, yell, complain about their messes, roll MY eyes (the apple doesn't fall far from the tree) and get all stressed out because the house is in utter shambles... they are here.  Safe.

It's no secret that I have a little trouble trusting God with my kids.

And I hate that. 

We dedicated them to the Lord as wee little babies.  We promised to raise them up to love and serve God, to the best of our ability.  We promised to trust Him with their little (and big) lives.  Why is it so hard for me to do that?

It's not that I don't try. 

Each morning before my feet even hit the floor (and often in the middle of the night) I pray that they will have a good day, be protected from all the bad language (and trust me, that's the very LEAST that I ask their protection from... I'm saving you from the gory details of my earnest prayers), be safe, make good choices, be a blessing to others... and I pray that I will have peace while they are away.

Then I drop them off and there doesn't seem to be peace. 

Obviously we're a very real part of this world.  Obviously we can't live in a cave or a place where they never see the light of day or the dark of the world.  Obviously I have trust issues.

One of Caleb's friends posted his favorite Bible verse on his facebook page a while back and it quickly became Jared's favorite too.  I often catch him opening his Bible and reading that portion of scripture over and over.  I know he's working on believing it with his whole heart...

Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.  Deuteronomy 31:6

I'm workin' on it too...

1st day of school, 2005
Would YOU be able to leave that face
and be happy about it?


Thursday, February 21, 2013

Talk, talk, talk...

When I first met Jon's family, we spent a lot of time in their living room talking.  I was new to the family, the surroundings and to the art of talking.  While my family is close, we never did an awful lot of just being... just visiting... just talking.

In the beginning,...all this talking... it made me uncomfortable.  I'm fairly quiet to begin with, so being the center of attention in this new little family made me antsy.  I quickly grew to love those times tho, listening to Celtic music and talking... isn't that what Saturday nights are all about?

Well, in the busyness of life with a young family, we haven't been able to spend much productive time in our own living room.  Oh, don't get me wrong, we have spent a great deal of time dancing (usually to Celtic music) or watching TV or wrestling or walking sick babies or being loud (usually involving Celtic music) or singing or changing diapers or reading to the kids or rolling the rug up, spraying the floor with Pledge and letting the kids 'skate' in their socks (don't ask, this was their dad and nobody got hurt)... but not a lot of conversation.  Until recently.

Due to lack of funds to do pretty much anything but stay at home, we have taken up talking. 

Sometimes we discuss the really important things in life like God and family and who's wrestling in what weight class on Saturday (if you know my husband and Caleb, you'll understand)... and  sometimes we discuss the less important, like the weather, the holes in the couch Josh has made with his jagged fingernails (yes, another phase) or who's wrestling in what weight class on Saturday. Sometimes we have debates and sometimes the kids argue and sometimes Josh gets us all laughing or singing hymns and sometimes we do a lot of talking about nothing at all.

Like just the other night... we were discussing facial hair and Jared, in his usual has no idea that he's even being funny voice announced that, when he gets older, he's going to grow a full beard.  I asked what the lure of that was/is... why he wanted to do that.  He answered "so when I get lonely, I can groom it".

Alrighty then...

I was (immediately) reminded of  the time I asked him what he wanted to be when he grew up and he answered "a fire hydrant".  Obviously, he has always had high aspirations.  And yes, the discussion about becoming a full bearded fire hydrant ensued and, before we knew it, it was time for bed (thank God because that conversation was clearly going nowhere fast).

These truly are the best times.  Another mom friend of mine (a mom of SIX boys) was saying the other day how she's trying to enjoy these times to the fullest... that these next few years are all we have before they learn to fly on their own.  We really only have a few moments with them... to teach them, learn from them, listen to them and talk to them.

Often the stories from school and life are hard to hear.  They typically end their sentences with "and DON'T email the school, Mom" (do they think they know me or something?).  We talk about the hard stuff and try to help them, knowing full well that they need to find their own voice, their own convictions, their own way.  It's hard NOT to email the school with each and every wrong that goes on within those walls, but it's just as important for me to learn to pick my battles as it is for them to learn to handle theirs with grace and integrity.

Grace and integrity... wow, such beautiful and important words.  Words to live by.  Words worth talking about.

So, while I'm not always happy with our lack of funds to do anything but stay at home... I am so (incredibly) thankful that we have taken up talking.  

Around the campfire...

another great place for talkin'

Love these faces...

even when they don't want to talk 
(or smile or stand up or look at the camera... Josh!)


Saturday, February 16, 2013

Home sweet home...

I love our home.  It's home.

It's not big, it's not fancy and it's not clean... but it's home.

In fact, it's dusty, cluttered, duct taped and needs some tender lovin' care... but it's home. 

I decided to clean my room today (and yes, the house is still standing and nobody had a heart attack). Our bedroom was never meant to BE a bedroom.  It was meant to be a den, a TV room, a play room for the kids... but then we had too MANY kids.  We had to relinquish our big, sprawling, double/double closets to Caleb and Jared and we moved downstairs... into the den.  We had to give up our king sized bed and my rocking chair and hope chest that Jon made me for our wedding.  We traded the large, empty, beautiful floors for no floor space at all.  But, it's cozy (please don't ask me to admit how many times I have drilled that into my own head over the years).

There are 2 closets in that room... one was originally meant for the vacuum, winter coats in summer and other miscellaneous items that needed to be handy but out of sight (doesn't everyone have a closet just for their vacuum or was I that much of a dreamer?). Now, it's basically a junk closet.  It does have SOME of my clothes but it's so small and hard to get to because the dog bed is in the way... even tho the dog doesn't use the bed because he spends the entire day in the shower...and all of the guns that we own are, for some reason, on that side of the bed... and the winter boots because those don't fit in the kitchen closet... and my large skillet, crock pot and other small appliances that I don't have room for anywhere else... get my drift?  It's a cluttered disaster.  It's actually a little comical watching Jon try to get in bed because I might have strategically planned that to be his side of the bed.  

The other closet in the room was my dream craft closet (I don't do crafts but thought, since I had little kids when we built the house, I surely needed a craft closet).  Jon built shelves in there that are deep and wide and beautiful.  Now, it houses soup and flour, pasta and papers that I think I need to keep but probably should just throw out.  It's a pantry.  In my bedroom.

As far as the vacuum... well, when it's not lying in the middle of the kitchen/dining room floor, it does have a home... just not a whole closet to call it's very own.

I have an acquaintance that lives in a big, beautiful, everything is white and in it's very own spot house.  It's just that tho, a house.  Nothing has fingerprints and there's no artwork scotched taped to the walls (not a great idea by the way... sometimes it takes the paint off when you change out the artwork). She came to visit me once and, after I was done with my spiel about how cluttered and dirty and dusty and overwhelmingly small my house was, she commented "it's just lived in Susan, it's not that bad".

Alrighty then, that made me feel a whole lot better.

After many years of mulling that comment over in my head (just a few times, I haven't really let it consume me or anything... hahahahahaha), I can finally take that comment as a compliment.  Honestly, I think perhaps she even meant it as a compliment.

I WANT my home to be lived in.  I want it to be warm and inviting and I want people to feel like they can kick their shoes off and lie on my couch if they want.  And some do.  Caleb had a friend spend the night last night and it didn't take him long to put his feet up and get comfortable.  His shoes joined the heap of others in the middle of my entryway (okay, so that part I DO hate and wish we had a place for shoes... but... some people wish they had a place to lie their heads at night so I guess I can deal with a few muddy shoes in the kitchen, right?). 

So yeah, it needs some tender lovin' care and it's packed full of many years of memories in the form of clutter... but it's mine and it's home and there's no other place on earth I'd rather be. 

And plus... my friend's kids couldn't do THIS in their home... they might break something.


Because everyone should be able to...

fly through the living room

at least once in life!!!

Okay, back to work... thanking God for the memories this home holds... the good ones, hard ones, sad, happy and stain on the carpet from one of the kids throwing up ones... precious, messy and from Him.  


Thursday, February 14, 2013

The good, the bad and the ugly...

Going to Children's Hospital in Boston takes a lot out of me.  My stress is heightened and I go from being SO incredibly grateful for the blessings that surround me to being incredibly sorrowful at what I see there.

Today was no different.

The faces were different from those I had seen before, but the IV poles, bandaged bodies and frowns were the same.  There is always something worse, always someONE worse... it's overwhelming... and then I get giddy because we HAVE come a long way and ARE so blessed.  I told you... emotional doesn't even begin to cover how I feel toward that place.

I came home and had a good, long, hard, ugly cry... and now I'm smiling (and exhausted).  Aren't you glad you're not married to me?  

Anyway... Josh's hip...

The Good News... Dr. Kim reviewed the x-rays from last time and ordered new ones.
He does NOT (repeat... does NOT) see any evidence of arthritis.  There ARE some changes that COULD be consistent with arthritis, but there are typically other things that show up as well... none of which Josh has.  The hip joint itself, while looser than he wishes it was, is fairly stable.  Dr. Kim couldn't get it to dislocate at all... and he tried, I watched him.  The impingement syndrome that he thought might be a possibility last time doesn't appear to still be in the running as the pain culprit (due to the ball of the hip looking so lovely).  And the last thing Dr. Kim was concerned about (a blood flow issue common in folks with Down Syndrome) did NOT appear to be present on today's films (which is REALLY good because that is nothing he can fix).

The Bad News... See above.

Basically, the bad news is that there is no apparent reason for the pain that Josh is experiencing.  We asked all the questions we could think to ask, reviewed all the possibilities, discussed treatment of the possibilities that we had ruled out and then talked some more.  Dr. Kim said he could sense our frustration (ya think?) and asked us to be patient (ya think?).  He asked that we give things another month or so and, if the pain doesn't calm down, he will order an MRI.  He said it could just be muscular... and as we were riding home we thought back to when it started (or increased... because he has had pain everyday for a while but nothing like these past 3 weeks)... and we realized, it DID increase when he started getting sick with this icky virus that he's still harboring.  So maybe... just maybe... it will lessen and all will be well again.  That's our hope anyway.

The Ugly... Dr. Kim has lymphoma.  His lymphoma is the type that cannot be cured.  He is a good man.  He's humble and smart and honest... and scared.  He didn't say that, but the look in his eyes as he spoke, the gray hairs that have never been there before, the way he had to sit to talk and got short of breath... I could tell.  He spoke openly about his disease and thanked us profusely for asking.  He's not an overly talkative man but seemed genuinely happy that we cared.  Please pray for him.

Now, go love on your loved ones.  It's Valentine's Day after all.  Pull them close and tell them how much you love and appreciate them.  Do something special for them... even if it's only a compliment.  It's important.

Me & My Valentine
(Hawaii, 2005)

Jon put this old'ish photo on as my screensaver this week... to remind me of how much he loves me, he said.   We look young and well rested.  A lot has changed.  hahaha!!


Tuesday, February 12, 2013

You put your right hip in...

you take your right hip out, you put your right hip in and you shake it all about... you do the hokey pokey and you turn yourself about...

Josh takes this song literally.

He puts his right hip in and he takes his right hip out... of joint that is. 

So we're off to Boston again on Thursday to meet with Dr. Kim.  Dr. Kim has much experience with 'the Down Syndrome hip'.  I have been told that he pioneered the procedure he did on Josh's hip several years ago.  I have even been told that he travels the country teaching the procedure.  I haven't googled any of that so I don't know if it's true, but I have found several of his 'periodicals' online about 'the Down Syndrome hip'. 

We met with Dr. Kim several times before the surgery and he assured us that we didn't have a choice in the matter... that Josh had to have the surgery, that we needed to give him this chance.

Dr. Kim also assured us that he had never had one fail.

Enter... the Lewis family. 

You know when you see the words "results not typical"?  Well, that usually means us.  If it's not typical to have strep 27 times in your life then you know that one of us (or several, as the case may be) will have it that many times (slight exaggeration for point making purposes).  If it's not typical for a 13 y/o to have the aches and pains of an 80 y/o man on a daily basis, then you know that one of MY kids is that 13 y/o (unfortunately, no exaggeration there).  If it's not typical for hips to come out of joint once they have been surgically sewn in there, then you know you're dealing with a Lewis.  

We just aren't normal.  We have weird things.  A lot of weird things.  Josh's surgery failed.  Dr. Kim does not have bragging rights to the 'Down Syndrome hip' anymore.  He, unfortunately, has had one fail. 

Josh now has pain on a daily basis.  He had NO pain prior to surgery... not even once did he complain of pain in that hip.  Ever. But we decided to have the surgery, even without pain, to save the hip from irreversible damage (and a new hip early in his teen years).   But did we save it?  Did we trust God or did we make a rash decision that has caused Josh years of pain (sorry... the guilt from putting Josh thru that surgery is always sneaking up on me)?

The last time we met with Dr. Kim, he was very apologetic and humble, admitting that he doesn't know what to do or where to go from here.  Trust me, while I appreciate his total honesty, it was a hard pill to swallow.  Remember, he pioneered the surgery.  We have the best of the best here folks.  Nobody to consult with, get a 2nd opinion from or discuss the situation with... and he told us that... that he didn't have anyone to consult with, get a 2nd opinion from or discuss the situation with. 

His last x-ray showed arthritis.  He's nine years old.  Arthritis.  And not just a little bit.  Dr. Kim wasn't present at that visit (sadly, he's undergoing cancer treatments), but he was consulted and we emailed and no decisions were able to be reached.  "We wait," he said.  "I really don't want to touch the hip surgically again until he's a teenager,"  he said.

Fast forward another year (or has it been more?), and Thursday we'll discuss things again.  We have to do something.  Jon asked why we're even going back when they don't know anything... said there's nothing....

And my only answer is because Josh is in pain. Every day. His life is being altered and he's missing out on a lot of things that he loves (jumping, dancing with all his might, playing kickball and wrestling with Caleb and Jared just to name a few).  He asks for medicine on a daily (and nightly) basis.  He cries because it hurts.  I often hear him praying when he's alone, asking God to 'help ma hip feel bedda".  He is sore and sad.  We have to do something. 

As I was thinking about this yesterday, I remembered a verse God gave to me right after the hip surgery.  I'm sure you could probably have guessed, Josh's recovery was not typical.  He was OUT of it.  He literally was not with us for a week after that surgery.  Due to pain and other mind altering medications they kept giving to make things better, he wasn't even with us. 

I begged for them to stop the medications but they were determined that he was in pain and needed those meds to get thru.  I'm not kidding... I begged.  They were the doctors tho.  They had the degrees and initials behind their names.  What did I know? 

During that very long and sometimes touch and go 7 days, I spent a lot of time trying to figure things out.  I googled til the cows came home and couldn't find reasons for Josh's medical issues.  And one day, as I sat in the hospital room watching Josh's oxygen levels dip to dangerous levels, I opened my Bible for help.  I was looking for a certain verse and I knew it was in Isaiah.  I didn't find that particular verse because God had something way better for me that day.  I found this...

"For my thoughts are not your thoughts, neither are your ways my ways,"  declares the Lord.
"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."  Isaiah 55:8-9

Whoa... wait!  Were you talkin' to me, God? 

Never in my life have I been reminded to vividly that doctors are only human.  Medicine is not an exact science.  There is only One that knows.  There is only One that is exact.  

And we can trust Him. 

Even if Josh is in pain every day, we can trust Him.

Even if Jared is in pain every day, we can trust Him. 

I will trust that, in His perfect time, Josh's hip will 'feel bedda'. 

I will trust that, in His perfect time, Jared's back will be restored to that of a 'typical' 13 y/o and every joint in his body will not ache constantly.

And, I will also trust that, if those things aren't God's will for my kids, then we will be given the strength and courage to continue on trusting Him. 

Will you pray with me that Dr. Kim might have ideas on Thursday?

The literal Hokey-Pokey
(hip totally out in this shot)
 I mean, isn't this the way everyone watches television?

And... you're welcome for causing the Hokey Pokey song to be stuck in your head for the rest of the day. 

That's what it's all AH-BOUT!

Love, Susan

Friday, February 8, 2013

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!


Monday, February 4, 2013

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
(learning to sign for more ice cream)