Apr 29, 2011

Beach Bums

We are back ... we headed to a very much needed Spring Break. 

The kids had the week off of school so we headed an hour around the corner to the beach and got a beach house right on the water.  I have many, many pictures to upload but not the energy to do it tonight.  These are the ones from my phone.   

We had a wonderful time.  Manny wasn't the biggest fan of sand to begin with but he dealt with it and then eventually got the hang of it.  We played golf, went on a boat and hung out at the beach. 

And yes, Manny is feeling much better.  We got out of the hospital and had only one day of turn-around before we headed to our vacation.  (We had no internet, so no way to blog there.) 

I dug him a chair out of sand... worked great!

I know the face doesn't show it ... but he LOVED this.  We are going to need to find one of these that holds a bigger kid.  A GREAT way to travel when you can't use the stroller.

Apr 20, 2011

Boring day ... to excitement in a moment!

Decent night's sleep ... for a hospital.  He is still tortured by all the breathing treatments.  Now even the ones that he used to tolerate are causing a lot of problems and stress. 

But the good news is ... he needed NO oxygen all night.  About 6am he started having troubles but due to him not being able to cough enough. 

So when the Pulmonologist came in, he cleared us for discharge!  Yippee .... BUT ...

I have a feeling GI will not clear us yet.  (His c-diff is NOT under control.)

So that is the definition of irony.  Respiratory conditions brought us to the hospital.  Treatment worked for Respiratory but caused GI problems.  Now those will keep us here.  (GI will be by later to determine plan of action.) 

Thanks Rich and Elsa, he loves his new bunny.  He say "buh-e" and can ALMOST push the button himself.

A treat for the day was a harpist came by.  He was so funny.  Every time she would stop playing, he would say, "Go" and do his own made up sign for harp.  (You know how they play their fingers across the strings?  He would do that with one had and say, "Play".)  He was dancing and having a blast.  Who gets serenaded by harps??  Manny.  That's who. 

They brought him a little maraca and he can go to town on that too. 

Then we played bubbles and blocks with the Child Life lady. 

Now we're chillin' ... trying to keep ourselves entertained.  I guess I never realized how entertaining he finds the kids! Even if they're not playing WITH him, he watches them.  Apparently, I'm boring.  (Shock, I know.)

The Infectious Diseases doc came by and said he has no reason to keep him here.  Ran a chest xray (waiting for the results), will run a CRP (test for infection) and then it's up to GI but ... there's hope of going home again!

And his new favorite phrase today?  "I did it! Yay!" 

5pm ... you'll never guess what they said ...


Still take a few hours but we're outta here! 

Apr 19, 2011

Rhinovirus ... not the large, gray animal

Today was a lot more quiet.  I think I needed that.  I'm just now getting around to posting.  Manny and I just spent the day hanging out. 

Last night?  He was in a lot of pain (probably c-diff abdominal cramping).  So we did Tylenol all night and that seemed to help. He actually DID sleep a little bit. 

The problem? That stupid machine.  Every 4 hours, the Respiratory therapist would have to come in and do this treatment.  He was not tolerating it well.  She even was apologizing to him and would periodically let the mask off his face so he could just calm down.  Heart rate was going ridiculously high.  And there's me ... trying to be calm as to not make him even MORE scared.  But truthfully ... tears were pouring down my cheek. 

It would take me almost 2 hours to get him calm enough to go back to sleep.  By then, it's almost time for another treatment. 

I resolved to have a chat with the Pulmonologist this morning. 

Thankfully he came in early and it was the one who is more "chatty" than the other one.  We have a better rapport.  So I asked what we could get rid of I voted for getting rid of BOTH of the new machines and going to what we have a home.  He wanted to keep it all so we had to come to a compromise.  Cough assist is toast.  Yippee!!  Then the medaneb will only be done during the waking hours. 

So while I still detest this ... I can live with it. 
And during the day today ... he still despises it but he is tolerating it a tiny bit better.  Heart rate staying in a safe range, etc. 

Then came in Jennifer, the physician's assistant for the GI.  She is the one who has been seeing us for c-diff.  She actually was suggesting maybe a consult with an infectious diseases doc to see if there's anything else that can be done for him. 

Then the GI came in.  She started him on Flagyl (round 4 since end of February) and something else ... can't remember the name since it's not been given yet.  Doc said that she would only do vancomycin as a last resort due to the horrible potential side effects.  But she said if his amount of diapers continue to increase, we might have to take him off feeds, put him on IV fluids until he can build up again.  (This is what kept is in the hospital an extra few days back in February!)  So we're hoping that doesn't happen.  (So far, he's not cooperating with that plan. "Severe" c-diff is where there are at least 10 diapers in 24 hours.  He's had 9 in 12 hours.  Hoping the meds and the prayers kick in soon.)

Also, Dan ran by really quickly today. Just long enough to bring me a few needed items from home. He had Jacob and Zoe with him (since they're out of school). They were only here about 15 minutes and during that time, I took the chance to run to the cafeteria to get lunch and dinner for me. When they left, he was NOT happy for a while. Maybe they'll come back soon ... or even better, maybe we'll be outta here soon.

During the day, he got VERY bored.  He's very used to all the commotion at home, all the kids, going on errands all the time, etc.  And here?  He's got one chair and one bed and me to play with.  I brought toys and those have kept him busy ... until today.  "NO WAY" was the response to every single toy offered.  So I again asked if Child Life could bring up something for him. 

Singing "ABC" song

But better yet, they sent up a Child Life specialist! (The usual people we get are volunteers who just deliver a toy or two.)  She brought colorful blocks, blankets to make a pallet on the floor, a musical toy and bubbles.  That kid lit up!!  And she's coming back tomorrow to have me fill out paperwork to better meet his needs.  I asked what the "secret handshake" was so the NEXT time I'm in the hospital (hopefully a LOOOONG time from now) I'll know how to get the right person.  She said she'll enter him in the computer and we should be all set for next time.  Obviously the demand for this type of service is much higher than they can supply.  But come on ... Manny should be a top candidate.  (And she agreed!) 

When he's here, it's usually for a long time.  (Last time was basically the month of February.)  Also, he is usually in isolation (meaning he can't go down to the playroom).  And finally, it's not like he can get up and play and run in the room.  He is stuck with whatever we bring him.  Within a few minutes, he perked right up, was singing, clapping, dancing!  HOME RUN. 

We just got the confirmation of the specific virus Manny has.  Rhinovirus.  That's it.  A "cold".  THIS much trouble over a simple cold.  Nothing fancy.  Nothing dramatic or rare.  Just a cold and it's landed him in the hospital with double pneumonia and a horrible case of c-diff.  Can't imagine how bad it could get with something bad!

Just had a fun treat.  My friends, Rich and Elsa (who I've mentioned every time we're in the hospital).  They brought me chips and fruit!  (YUM!)  And Manny a rabbit.  He was sleepy and now he's grumpy (Why am I naming dwarfs?)  ... anyway ... I'll show him the rabbit tomorrow when he's happy (again with the dwarfs!).  And post some pictures. 

Headed to bed soon, hoping Manny has the same plans. 

Oooops ... but not before one more torture session of respiratory therapy.  (sigh)

Apr 18, 2011

It's not OK

Couple of interesting things first. 

I mentioned that we were on the same floor, in the same room we've been in before, saw the same tech and Doc in the ER, etc. 

What I didn't mention is that THIS is the room we were in when we got Manny's original diagnosis last May.  So I find it ironic that we get his second diagnosis in the same room of the hospital. 

Now on to the happenings of the day.  The surgeon who did the muscle biopsy sent his Physician's Assistant up to check on the baby's leg.  Took off the bandage (in 1/2 second), saw that it is disolvable stitches and said that was it.  Seriously, even with small talk, he was in our room less than 2 minutes.  I was supposed to come over here today to have that looked at.  I would have been soooooo ticked.  Because we have only one vehicle right now and Dan needed it for business this morning, he was going to drop me off at 9:15.  My appointment was for 10:45.  By the time he could come back to get us, it would be 12 or so.  I am sooo thrilled that we didn't have to do that.

The great news is it looks good.  The good news is it's healing well.  The bad news is ... healing skin must itch because he is digging at it.  He made it bleed so we had to put another bandage on it.  (Stinker butt). 

Next, the respiratory therapist came in.  Manny likes her - we've had her at least a few times every time we've been at the hospital.  He loves doing the "shakey vest".  But she said the orders had been rewritten ... to include the cough assist (torture machine I talked about earlier).  And a new device "Metaneb".  She says we'll hate it as much as the other machine, if not more!  She was right.

It was all I could do not to cry. Tears DID pour down my cheek. 

Instead, I just prayed quietly.  Then I explained to Manny what we were going to do and why.  (I believe in telling the truth ALWAYS!)  Sadly, he just said, "K" to everything I said,

He didn't like it but he didn't hate it.  He seemed pretty OK with it overall the first time we did this.  (After that, he was scared to death ... you could see it in the expression on his face, his heart rate, etc.)

Then it was time for the cough assist.  And wouldn't you know it?  The silly machine wouldn't work.  She tried for over 20 minutes ... but it wasn't working.  She was confused.  I told her it was a 'sign'.  She left with it and said they'd find me another one.  (Maybe that one won't work too!)

Now how about a cute story?  Sunday evening as we were being admitted, the baby, tech and I were in the elevator going from floor 1-8.  He saw the numbers and actually said each one as they beeped for each floor.  Seriously!  1,2,3,4,5,6,7,8.  The tech was in shock.  I was impressed.  He's one smart cookie!

OK ... back to the news. (Disclaimer on this paragraph:  potty details.  Skip to next paragraph if you'd like to miss that.)   Remember he has c-diff (contagious) and it causes diarrhea.  They wanted a stool sample to confirm it.  Well, he finally went just now.  And it was very strange looking.  Several people came in to weigh in on the look of it! LOL  Bloody diarrhea.  From my own research, it can be the c-diff kicking back into high gear (now that he's back on an antibiotic ... which is most likely) or it could be a new symptom (less likely).  BUT he has been saying "owie" a LOT and pointing to his tummy.  So ... it's always possible.  (And that's before we started up on the antibiotic.) 

And for those of you wondering about his overall diagnosis (newly received via muscle biopsy just today) ... do you recall the word Laminin?  Ring any bells?  It did immediately to me.  A few years ago, an email was circulating about Laminin and it's shape.  If you google it, you'll see it clearly.  It looks like a Cross.  People find it interesting at at the core of some genetic building blocks, looks like God has left His fingerprints there too.  Cool, huh?  And yes, this is the same thing that Manny is in need of.  How ironic ... Manny needs the cross.  And it's at the heart of the proteins.  The same thing that Jacob is having troubles with.  Coincidence?  Probably. 

And it's now 11pm as I write this.  The new diagnosis has set it a bit.  The truth is ... I was hoping the result would be nothing fatal. 

That hope died today. 

Too big for God?  Of course not.
Up for the fight? You betcha.
Grieving at the news?  Duh.

See if this was the first time we'd been given any news/diagnosis/prognosis ... this is devastating.  It's a huge kick in the gut.  And then we'd grieve and then eventually pull ourselves back up and dust ourselves off. 

But we got WORSE news less than a year ago.  11 months ago to the day in fact.  And we did our crying and grieving then.  And then we got on with life.  Making every day count.

Today, I was just given news that (according to the Doctors) we'll likely get to keep him for 8 or so more years.  And there are parts of me who want to rejoice with that news.  Afterall, the original diagnosis had him dying before he turned 1. 

But truthfully, this isn't OK.  Not even a little bit.  This is not right.  Babies are not supposed to die.  And yes, I know they do and that there's a higher purpose and all that.  But that doesn't make it any less painful when it's YOUR child suffering. It's the wrong order of things.  Babies shouldn't suffer.  Babies should run and jump and climb and play and eat and live.  All things Manny can't do. 

I'm not sure we (as humans) are supposed to accept it.  Maybe there's so much suffering because we expect it to be so.  Maybe it's because we accept it and don't fight for life enough.  Maybe we need to have more righteous indignation.  And more faith. 

 And yes, Manny has a great life.  We adore him.  He is celebrated.  That won't change. 

And yes, my faith isn't shaken.  I know God is still in control and still powerful and still a mighty Healer.  I still have hope that God can heal Manny completely; continue to astound the doctors. 

But today ... I was told my baby had a terminal disease.  And it's not OK. 

We Have a Name!

The muscle biopsy was worth it ... we got an official diagnosis.  I'm still getting my mind around it, researching, etc.  So over the next few days I should know more and be able to explain better.  But for now, I'm actually happy to have an official diagnosis. 

Merosin Deficiency Congenital Muscular Dystrophy.  It affects the Laminin alpha chain 2. 

The basics of this condition:  It is NOT a leukodystrophy (white matter brain disease).  Instead, it's a Muscular Dystrophy.  The old diagnosis had a prognosis of about age 2.  This one is "rarely makes it to adolescence".  This is NOT typically regressive (and since his hasn't regressed since birth, the odds are very low that he would lose functions).  It spares cognitive function.  These kids typically die of respiratory complications.  (Their lung function just can't keep up with their body growth, they get sick and don't recover.)  Typically they do not ever walk.  They tend to contractures (tightness) in ankles, hips and elbows.  (Manny has the ankle).  Also tend to develop sciolosis. 

So ... overall, not the greatest thing to have.  It is a very "life shortening" condition. 

The good news?  I have a big and mighty God.  He loves Manny.  He hears prayers.  We are still in faith that this story's ending isn't written yet.  Doctors have gotten it "wrong" before.  God has the final say.

I KNOW that Manny is supposed to be on this Earth.  He has jobs to do.  They are not completed yet. 

retro manny
This diagnosis has strangely given me a peace.  Now I don't have to fight for the diagnosis, I can focus on healing.  I know the enemy by name.  Merosin is going down! You picked on the wrong family, baby and community of friends.

Double Pneumonia

All through the night, I was reminded of various Psalms written by King David.  Mostly things like, "Why aren't you hearing me?" and "my bed is wet from weeping".  and similar such sentiments. 

Manny and I have spent many nights together in the hospital.  Many have been bad.  We're in a hospital, not a hotel afterall.  We are here because the baby is sick.  Most times it's because of the people coming in and out and doing things to him.

Last night was different.  He YELLED all night.  Not exactly "screaming in pain" like I say so many times we have with him.  This was just plain out YELLING.  M-A-D.  Nothing I did worked.  He just lost it and couldn't get it together.  No amount of comforting, playing, TV, music, toys, worked ... nothing.  From 12:30am-5:45 am he YELLED.  He barely took a breath it seems. 

I'm sure I've had one, but in my sleepy, rattled state, I can't remember a worse night sleep.

As I type this, it's 6 and he's partially distracted by the TV I just turned on and partially yelling.  I am clueless how to help him. 

Now physically ... sometimes it stinks to be right.  Today is one of those days.  I told the ER doc I thought he had pneumonia but then the chest xray didn't show that Saturday.  I had the nerve to tell the same ER doc my opinion again on Sunday and sure enough, Sunday's chest xray showed definite double pneumonia.  Thankfully my pulmonologist took me seriously and started him on the meds for pneumonia, even before the xray came back. 

Now we're waiting for the viral panel to come back to see if the virus can be identified.  Meanwhile, they took bacterial cultures on Saturday.  They initially came back negative but the true test is 3 days so we're waiting for that as well. 

Oh, and I think you all remember Manny was positive for c-diff back in February.  (A gift from that hospital stay.)  After 3 rounds of Flagyl, he still tested positive 2 weeks ago.  The GI decided not to readminister meds, seeing if the body can fight it for itself.  They will repeat this test again today once he can give a "sample". 

The ONLYgood news I can think of about him having this is ... we again won't get a roommate.  :)

10am and the Pulmonologist was just by.  He was quite concerned at his numbers and how quickly he went down hill.  I think we're here for a while.  And ::Shudder:: he just mentioned the cough assist. (I mention this horrible machine in a past post ... HERE)

I need to finish this post because we just got news ... of his diagnosis from the muscle biopsy!!  Stay tuned.  (Must tell Dan before I tell the whole world.)

Apr 17, 2011

Hello old friends

Let's see if I can summarize quickly the current Manny situation.  In one sentence:  We are back in the hospital. 

If you want more details of how we landed here ... after yesterday's blog was written and sent, Manny got worse again.  Before 10pm he was in and out of respiratory distress ... and was all night.  There was about an hour where I couldn't get is pulse ox to go over 85 (with oxygen on).  It was a long, hard night. 

Today, his vital signs were improving but he looked generally "sicker" than the day before.  It was pretty pitiful watching him go in and out of sleep, just feeling so blah. 

I called my Pediatrician and we talked for a while and bounced around the idea of staying home versus going to the hospital.  She ultimately left the decision up to me but suggested that if he desatted again that we should go.  She also suggested I call the pulmonologist.  He said go to the ER. 

His numbers were looking good so we decided we would just do watchful waiting. 

By afternoon nap, he started to slip in respiratory distress again.  (Mild).  So we went. 

Ironically, the same Triage nurse was there.  The Same ER doc was there.  (That helped so we didn't have to start from scratch.)  The ER doc listened to his chest and said it did sound more congested than yesterday.  He ran a new chest xray.  He called the pulmonologist and they were only talking for about 1 minute and decided to admit him.  Then it was just waiting around for a room to be ready. 

Once we were headed up to the room, we started knowing everyone.  The techs, nurses, charge nurse ..everyone.  Well hello old friends. 

They ran a whole bunch more tests, gave him a whole bunch more new meds, breathing treatments, etc.  They're not taking this lightly (which I appreciate).  We won't know any of the results until tomorrow though. 

As I type this, it's 10:30pm and he's snoring beside me (he never snores unless he's sick).  I can hear it "crackle".  His pulse ox started at 100 (while crying) but is now teetering between 90-93.  We're about to need oxygen.  (Which I'd prefer NOW than fight for it at 2am or something ... all you long timers will remember THOSE horror stories.)  .... ooops, it just hit 65.  Going to get the nurse to get the oxygen set up.

Sadly, I have this hospital thing down now.  I know what words to use/avoid.  I have friends as nurse and techs.  I know all the specialists.  And all that makes me feel so much better, well taken care of. 

Apr 16, 2011

My Life is Not Boring

My life is not boring.

How’s THAT for an understatement?!?

After a long, emotionally draining day with Zoe, I was ready for a good night sleep. Manny had other plans. Starting at dinner time, he was retching over and over and over. He was having a hard time catching his breath between. Pulse ox was showing his heart rate 120’s when just sitting there but would go up to 160’s during retching.

Finally went to bed and he screamed most of the night. He was also doing this weird gurgling thing. It was very scary.

at the ER ... starting to feel a bit better

About 7:30 we put him in a chair at the foot of our bed and turned the TV on so we could get at least some sleep. I faded in and out until about 9am when I got up and felt him and he had a fever 101.2. He was no longer retching or screaming but he had a pretty bad cough. (High in his throat, not down low like pneumonia.)

Over the next few hours, things got bad. His heart rate was skyrocketing. It was hitting over 215 and staying there. He even fell asleep (with oxygen on) and his oxygen saturation plummeted (with triple the amount of oxygen we usually get by the end). He would be sound asleep and then the monitor would show his heart rate go from 175 or so up to over 215 (still asleep). Pain would then wake him up and it would stay up.

His breathing was very erratic. Respiratory rate so high I couldn’t count it basically. His chest wasn’t rising and falling right with the breaths either.

We’d been praying about it and left a message with a doc. I then got on Facebook and asked friends to pray. I called my parents and they immediately prayed with their church.

Our Doc called and said we needed to go to the ER and that she’d called ahead to let them know we’d be on our way. We packed up my stuff and Manny’s stuff in case we needed to stay over night. I had the 5 other kids pack up an overnight bag for my Mom’s house. She came and got them and we rushed to the ER.

By the time we got there, he’d stopped the weird breathing and his heart rate was staying around 175. We even debated whether we should take him in at all since he was improving. But He was still 103 plus fever, horrible cough and elevated heart rate. I didn’t want him to have another episode and then wonder, “What if”.

Dan dropped me off at the ER and headed to a church meeting for the evening.

They did a chest xray and basic lab work. The doc looked under the baby’s bandage to see if that was a possible source of infection (from the muscle biopsy last Friday). But it was not. It looked just fine. (Just a lot longer than I expected ... I was told it would be 1 – 1 ½ inches but it is over 2.

The only thing he found “off” was the back of his throat looked very red, raw, red rash, bumps, etc. He called it “Viral Pharyngitis”.

Manny kept perking up. Motrin and Tylenol alternating still can’t keep his fever under 103 but he’s doing well considering. We have him on pedialyte. We have oxygen at home. So basically there’s nothing they can do for him that we can’t do at home. So they discharged us. Yippee!!

I still have a very sick little baby on my hands. But … whatever was happening earlier today is GONE. Praise God! I have a feeling that God healed him of that. It was like a lightswitch as soon as I started asking others for prayer. And I am very grateful.

Dan was still in a meeting so a friend came by and picked us and and took us home.  9:30pm finally home and he is back asleep. 

Now … hoping that Manny got the Memo about the good night sleep tonight. No more scaring Mama!

Apr 15, 2011

Zoe's "Mental Health Day"

After last night's issues with Zoe going to bed, we didn't know what to expect this morning.  But she did fine.  In fact, it had been a very long night with Manny so Dan let me sleep in and when I woke up, she'd been watching TV.  I called her into the bedroom with me and Manny and we were just being silly. 

She was already over her thing from last night and was happy she got to stay home with Mama.  In my best guess, she thought if she could just go back, she could PROVE she is a "good girl", "worthy" of love/praise, etc.  I told her that she didn't do anything wrong. 

As we were just discussing what we would do for the day, she helped me get Manny dressed.  Out of the clear blue, she said, "Why did his tummy mama leave him?"  We had a loooong discussion about abandonment issues, how I would never go anywhere, etc.  It was completely heart breaking because I knew she was linking those two conversations together. 

And during conversations like this, you never know if you're handling it right or not.  So I just pray hard and hope like everything I am saying healing words. 

Finally, I asked if it was Manny's fault that his tummy mama left him?  She was immediately like, "No."  And I said, "It wasn't your fault your tummy mama left you either."  And she started to argue with it and before I would let it out, I said, "You were just a baby too."  And somehow something clicked.  She was relieved. 

I talked to her about how I love her when she makes good choices and when she makes bad choices.  That I would NEVER leave her. 

I don't know what's been triggered in her classroom lately, but somehow all this is tied with a feeling of abandonment.  I think we're on the healing road now.

She decided we would go to the mall.  We had a great day.  There were some very interesting conversations.  I will leave some out just for privacy.  But there was much more about what was said/done in the classroom. 

One of the best parts of the day was during lunch and I started a game with her.  I would say something that I liked about her.  Then she would say something she liked about herself.   At first, she found it very hard but then caught on.  Then she wanted to do it for me.  And we played this game for about 20 minutes just taking turns. 

After lunch, she said, "Would you call me 'Follow Directions Zoe'?"  So I did.  All day, I was extra careful to point out EVERYTHING she was doing well.  I do it as a habit anyway but today was very focused concentration on rebuilding her. 

By the time we picked the kids up at school, she seemed mostly herself again.  I was then able to ask her to do some chores and she was able to do them with very little frustration.  (The way she used to be.)  But there was still a very short fuse. 

It was during this whole thing today that I realized HOW I talk to Zoe.  (I was trying to analyze every interaction.)  Like I asked her to put her lunchbox out in the garage for the weekend.  She opened the garage door and threw it out there.  I said, "Thanks for putting your lunchbox in the garage.  I prefer if you would put it on the shelf where we usually put it."  And she did it with no troubles.  

Then it clicked in MY head.  I live by one of the principles that I teach in Dale Carnegie, "Make the fault seem easy to correct."  And I think the teacher escalates things.  (Disclaimer ... I am by no means a perfect parent and don't claim to be one.  But I do try to be situation and child specific in the way I treat my children.) 

And a second principle is "Praise the slightest improvement, praise every improvement."  In psychology, they call this "shaping" where you praise what is being done right and then slowly shape the behavior to be the desired one.  I do this without thinking.  From Zoe's description, this teacher is an all or none kind of teacher.  I don't know if she is a good or bad teacher.  I just know this is not a good fit for Zoe. 

And being embarrassed is one of the worst thing to Zoe.  She said that recently, the teacher has been doing a new thing of rewarding good behavior with jelly beans.  Apparently she lines the kids up and walks down the line, if the kid did a great job that day of following the rules the teacher says that they had a jelly bean day and gives them one.  If they got any other color, it's mentioned that they don't get one and that kid is skipped over.  I understand the intention of this ... but for Zoe ... this is HORRIBLY embarrassing.  It's been around the time of this that her behavior started to decline at school. 

And interestingly enough, Zoe has no troubles with music, art, speech teachers.  JUST her.  And for the record, we expect Zoe to follow rules.  If she does not, we support consequences.  I'm not sure why Zoe is showing such dramatic "push-back" with this teacher but it's certainly not a healthy environment for her.

I have no clue how this story will turn out.  I just know that today I got to spend time with this sweet, funny, amazing little girl.  She amazes me.  She has some "rough edges" ... (don't we all?!?)  But she is easily dealt with.  And worth fighting for. 

Apr 14, 2011

Zoe ... part three: The Meeting

Disclaimer:  I am going to leave out some details as people from Zoe's school might read this some day and I'd like to protect the innocent. 

My mom is a PhD Licensed School Psychologist.  (Handy person to have around in times like this with the Zoe situation!)  Wednesday, Zoe was called into the Principal's office.  (Not "sent" there.)  Zoe said she was not in trouble, they just talked.  I wasn't sure what to make of this so I called Mom. 

She gave me all kinds of good advice.  The best one was for me to go into the meeting very calmly and just listen.  (Thankfully that was my plan.)  I asked people to pray for me to have PEACE ... as I was feeling very unsettled and wanted to make sure peace would prevail. 

I walked up to the school to get the kids and Kaley (11) ran to me telling me she had seen a moment between the teacher and Zoe today.  Apparently, the teacher was YELLING and Zoe was crying/angry/scared.  Kaley was told to leave it alone so she did.  But she even overheard some of Zoe's friends saying, "Poor Zoe" and other things.  So I knew it had been a bad day. 

Meeting starts.  It's just the teacher (I'll abbreviate it T) and the Guidance Counselor (GC) and me.  T asked how I handle Zoe's outbursts at home and I said she doesn't have any.  Then I asked her to describe these outbursts.  And she described today's outburst.  Zoe apparently refused to come when T called, tore papers (her own), tossed over some chairs, wouldn't stop screaming/crying and so forth.  Eventually she was saying things like "I am a bad girl" and other similar things.  Finally, T said that Zoe put herself in the trash can and said that's what she was, trash. 

At this point in the meeting, GC got up, wiped a tear, got a tissue box and put it in front of us and we both shed a few tears.  T was just matter of factly telling the story.  Eventually, she cleaned Zoe up and Zoe cleaned up the classroom.  Somewhere in the middle of all that, she was sent to the GC who calmed her down. 

The whole meeting, I felt a peace in my spirit that all I had to do was listen.  I could make decisions about what to do later. 

T and GC were working out ways they could help her once she got frustrated/angry ... and I asked the question, "I'd like to know what is going on to trigger her anger in the first place?"

Eventually they asked if Zoe shares things with me about how school is going and what that was.  I told them Zoe's perspective is that T yells a lot and it scares her.  Zoe thinks T is mad at her a lot.  That the teacher thinks Zoe is a bad kid.

I got to describe a few new "odd" behaviors ... such as yesterday, she came home insisting on being called, "Kiera"  (the "Perfect" kid in the class according to Zoe, the one who is praised all the time for doing everything right).  This made the GC's eyebrow raise. 

I know from the few things I shared that T knew Zoe shares a LOT with me. 

I then asked her to share her side of the story of a couple of incidents since I only have Zoe's point of view.  She shared her perspective and I told her Zoe's.  Like one is where a little girl said Zoe kicked her on the slide.  The rest of the story?  Zoe was going on, tried to stop and couldn't.  The little girl was climbing UP the slide.  But T never asked HOW she was kicked or asked Zoe's side of the story, she just punished her.  There are numerous incidents like this.  Zoe does NOT speak up for herself. 

GC asked what forms of punishment she uses and T said only timeout.  (Which I know is not correct.)  I said, "Zoe said you asked her to run laps."  And she changed her story. 

Anyway ... eventually, T came back to today's story about Zoe putting herself in the trash can and covering herself in the trash.  T said that she then put HERSELF in trash and said something about everyone making mistakes, feeling like trash, that even she feels like trash, etc. 

At this point, I knew it was prayers keeping me from screaming! What the heck???  What kind of lesson is that?? 

The meeting was very, very telling about this teacher, her heart and her view of Zoe.  It's more than clear that this is not the right placement for Zoe.  I know that's not what the T and GC came away from the meeting with, but it's what I heard loudly and clearly! 

I got home and called Mom again.  From her perspective, she is worried about the same 2 things I'm worried about.  1)  Something triggered Zoe's intense anger and we can't guarantee this won't happen again.  We need to protect her and the others around her.  And somehow this teacher seems to intensify, escalate it, not de-escalate it.  So that's a bad placement.  2)  Zoe's self esteem has been horribly damaged and we are going to have to do some major work to help her heal.  Mom's recommendation is that Zoe and this teacher are NEVER left alone again. 

I sat Zoe in my lap and told her I had two things to tell her.  1)  She is never allowed to act out like that again, that we are going to help her with her anger and help her see it coming before it gets too bad.  2) That I was horribly sorry I let her down.  I had no clue it was this bad and I asked for her forgiveness.  I assured her I'd find a way to fix it.

I know I will need some time to sort out our options.  So I called the GC tonight and said that Zoe will be taking a "mental health day" tomorrow.  Some time just to calm down, etc.  That gives us the weekend to decide what to do for her.  And if we haven't decided by Monday, we will keep her out.   She is NOT going back to that classroom.  That is NOT an option.

We thought we had a handle on all of this and all was good.  I told Zoe she was going to stay with me tomorrow and we'd have a fun day.  She was like, "Yeeeesssss!"

Then at bedtime, Dan was tucking her in and she said she wanted to go to school tomorrow.  He told her what we decided and why.  She got very very upset Dan said. 

What the heck is THAT all about?  I wasn't there so I don't know.  But Dan's take on it is that there is some kind of weird "addiction for approval" with her.  I know I've seen the teacher do a Push/Pull emotionally with Zoe.  Maybe she wants to make her like her.  Need for her approval?  Who knows? 

Man, this has gotten so out of whack! 

As I type this, I have no clue how to help her in either issue.  I know we have to decide what to do about her school placement and I know we have TONS of options.  But more importantly, I'm very concerned what to do about her mental state. 

Calgon ... take me away! 

Apr 12, 2011

Zoe ... part two

So that post from yesterday got a lot of attention.  I have many comments (mostly private emails).  And there are two themes in most of the comments. 

1.  People who understand and completely relate.  I'm truly sad that many people understand what I'm talking about because it means they have experienced it.  So for all of you ... I am truly, truly sorry for what you and your children have/are going through. 

2.  People who think I should homeschool Zoe. 

This one needs a bit of explanation.  I forget that people are reading this blog who don't know us or our situation or background.  (I forgot that as I wrote this.)  So for those who know us, this is repetition.  For those newbies ... here goes. 

I was homeschooled.  I currently am homeschooling some of the children.  For next year, we are looking at placements in private, public, charter and homeschool for the kids.  We believe different kids need different solutions.  And different years there are different needs.  So we don't see them as a lump or as one solution fits all kids. 

Therefore, I would tell you ... we believe in the merits of ALL of these schooling options. 

So for those who have offered to help us get started homeschooling, that's really sweet ... I've been doing it for a decade with kids.  And personally for almost my whole life.  I know the local homeschooling options, understand curriculum development and have many, many resources at my fingertips. 

Secondly, I have taught in several different types of schools ... everything from preschool to graduate school.  I was certified as a teacher.  etc etc. 

So rest assured.  We didn't stick Zoe into public school lightly.  We feel this is the best placement for her for numerous reasons.  I still believe this to be true.  We are, however, having issues with her teacher.  There's a misfit.  We've noticed it for a while.  It's now become time to take care of it.  Thursday, we'll be meeting with the teacher, the principal, the guidance counselor and the speech therapist. 

Thanks for all the suggestions. 

What I was doing was expressing the concern that many people have for their children... and that is ... when children are "different" ... it hurts.  There truly IS no bandaid for this.  No easy fix. 

Today, she had another rough day.  She and two little boys were seeing how hard they could punch each other on the playground.  Is this acceptable?  Of course not.  I reminded her of the rules and told her she shouldn't have been playing this game.  But what happened?  SHE got in trouble.  They did not. 

Why?  Because she is scared of this teacher and didn't tell her what was going on.  The teacher only saw Zoe punch this other kid.  (She has NEVER played this game at home ... she said it was the boys' idea to play this.)  Zoe didn't even bother trying to say her side of the story.  She just ran her laps.  In fact, the teacher said, 'Run a lap for me'.  And when Zoe was telling me this, she said, "But I decided to run 3 laps for her."  Somehow she thought she was helping the teacher... she didn't understand that was the punishment for punching the boy. 

I asked Zoe today what she would like the teacher to know.  She said, "Sometimes she says she is not mad at me but I know she is because she yells in my ear. She says things that I don't understand.  She yells too loud and it hurts my ears." 

We are going to the meeting to hear what the teacher's point of view is.  I want to hear everything she has to say.  I have VERY little I want to say to the teacher.  After she says all she wants to say, we can then make up our minds about what will happen. 

We know we have many options.  One is for the teacher to understand Zoe and her point of view.  That would be our favorite choice.  But we also can move her from her classroom.  And of course we can remove her from school.  By state law, she doesn't even HAVE to be in school this year.  So we know the power is in our hands. 

My concern is only for Zoe and her well being.  And right now, I don't know what the best decision is.  There are missing pieces of the puzzle.  We're hoping that we will see things clearly after the meeting on Thursday. 

So thanks for the comments, emails, calls and suggestions.  What I'd love is prayer for wisdom on how to help this little girl ... not just in Kindergarten, but in her heart.  For life. 

Apr 11, 2011

No bandaid for this

Let me introduce you to Zoe.  She is almost 6, was born in China and adopted at age 2.  While in China, she was bounced several times (7) from placement to placement.  When we met her, she immediately attached (almost tooo fast it seemed).  She was loved.  But she was also hurt a lot.  (Physically and emotionally.) 

Part of me wants to tell the whole story.  Part of me wants to protect her.  So this blog post might be missing some details. 

Zoe was born with a cleft lip and palate.  Both were repaired.  She also has an associated syndrome (Hemifacial Microsomia).  This affects the way she hears, talks, swallows, looks, etc. 

This year in school (Kindergarten), the kids have made her aware of how "different" she looks.  She has come home many times crying and saying things about her face.  Like "I hate my lips" and many other things. 

This makes Mama bear come out.  I know the other kids have no clue how it hurt her.  They weren't meaning to be cruel but it still hurts just as much.

Meanwhile, she is having troubles with the teacher understanding her.  Several times she has come home from school with a "yellow" (a warning of bad behavior).  When I ask Zoe what happened, the story sounds plausible (like something that would happen at home).  When the teacher says what happened, there is something missing in the story.  My guess is that she thinks of Zoe as a "bad kid".  Which she is not. 

Kid?  Yes. 
Bad kid?  No. 

She is a tomboy.  She has 3 older, very rough brothers and she holds her own with them.  She excels in sports and rough things. 

Meanwhile, she won't speak up for herself.  Like when a girl went and told the teacher, "Zoe pulled my hair."  Yes, that's true.  The rest of the story?  They were playing tag and while running, it was her hair that she caught.  Yes, Zoe should have been in trouble for being rough, not careful.  But not labeled.  Or the day the teacher said, "Zoe kicked a kid."  Uh what?  There HAS to be more.  She's NEVER kicked someone.  Zoe's version?  They were playing leap frog.  Zoe tried to leap and missed.  The kid only said, "Zoe kicked me."  And of course Zoe wasn't asked about what happened.  Just labeled as a bad kid. 

These (and many others) incidents happened near the beginning of the school year.  Zoe has still yet to speak up for herself. 

The other day, the teacher called and all but accused us of something subversive going on in our home.  Accused us of a few things.  All I know is that she is only like this in HER class.  Zoe was great in preschool.  Wonderful in 2 different VPKs.  Is amazing in Speech Therapy.  It's only in HER classroom where these things happen. 

Today I got the message for the date and time of the meeting.  So I started asking Zoe what is going on at school so I can tell the teacher what Zoe would like said. 

So we sat for hours and talked.  We both bawled almost the whole time.  She is soooo frustrated.  She is misunderstood.  She has these patterns that make her INTENSE and it makes the kids back off.  And it starts this vicious cycle.  She wants friends and she runs them away. 

Her abandonment issues are so deep and so profound. 

At home she feels accepted and understood.  And up until this teacher, she felt accepted and understood by her teachers.  She had friends.  The kids LOVED Zoe. 

So I have no clue what went wrong this year. 

All I know is that my baby is hurting.  And I have no bandaid for this one. 

Apr 9, 2011

Let there be light

As you can see, we have this very unstylish and broken light fixture above the dining room table.  (Might as well have shag rugs while we're at it!)  HATE it.  And it's so very not attractive.  Dan and I have very specific tastes about light fixtures and they don't always agree with each other.  But we decided that we would splurge and get a new light fixture.  So we piled the 6 kids into the van and off to Home Depot.  Shockingly, we found one we both liked immediately and even more shocking ... it was in our price range.  How can this possibly go any better?
 Now I can officially answer the age old question about how many people it takes to screw in a lightbulb.  The answer is 4.  These boys were all having so much fun running getting tools for Daddy, holding the flashlight, etc.  The project took twice as long this way but boy it was fun.  And in case you're worried about Manny missing out ... he was sitting just behind Jacob in his highchair shining the flashlight in the general direction for Daddy too!
 And now ... I have a cool, stylish, affordable light.  And more importantly, it's brighter than the other one!  Even with the same bulbs.  We can now see what we're eating for dinner. 
Ahhhhh .... and there was light. 

I don't know about you, but it doesn't take much to make me thankful.  On the same trip, we got a toilet seat for the master bathroom and I'm amazed how such a small thing can make such a difference. The old one had a broken hinge and would suddenly (randomly) sometimes sllllliiiiiide off and if that sounds like a fun ride to you, take my word for it ... it's not as much fun as it sounds!  (No, there will not be before and after pictures of the toilet seat!)

The funny thing is ... as soon as one thing gets done, it's human nature to skip right past it and on to the other million things that still need to be done.  Rather than be thankful for the moment.

Why IS that?

Like I was giving Dan a hug for putting up the light.  I was very thankful as we've hated it since we moved in here 5 years ago.  But while I hugged him, one of those "million" other things caught my eye across the room and I was about to say, "Now we have to do x and y".  And I had to STOP myself!

I KNOW better.  And yet my brain still went to the NEXT thing.

So I bit my tongue and just said THANK YOU.

And it reminded me of a post a few weeks ago about people often asking for Prayer requests but rarely follow up by Praise requests.  This is the same thing.  The thing we wanted soooo badly just a few minutes ago is now satisfied and we immediately look to the next thing that is "lacking".

Like the whole way driving to Manny's muscle biopsy I was praying asking for intervention.  Asking for His assistance.  So I figured the same amount of time should be spent on Thanking Him for doing what I asked.  The whole way home I thanked Him for answering the prayers.

What about you??

Just like in the Gore family, we recently said, "Let there be light" and (after an hour or so) There was light.  And we paused do savor the moment.

What has God done for you lately?  What about a friend or family member?  Coworker?  Child?  Did you spend as much time thanking and praising them as you did nagging them to get it done? (I know, I'm preaching.)

As Dale Carnegie says, "Count your blessings, not your troubles."  Good advice.

Apr 8, 2011

Muscle biopsy day

Morning came waaay too early.  Manny was his happy self as I got him up early, threw him in the car (while it was still pitch black) and headed to the hospital. 

We got an amazing parking spot.  (I am thankful for these little things as it's not easy to park my 15 passenger van ... like it won't fit in the parking structure so I am limited to side parking only.) 

We were the morning entertainment for the staff and those there for surgery.  He was crashing his cars again.  The "oh man" really made people giggle.  Then at one point I said, "You are silly."  To which he said to me, "YOU silly".  And the registration lady lost it she was laughing so hard. 

 Eventually it was time to go back to pre-op and entertain a whole new group of people.  This wasn't the children's hospital ... it was the day surgery floor ... so it is a mix of kids and grown ups in the same corridor.  The rooms were TINY and had no doors or curtains so we were all facing each other.  There is NO privacy in these places.  I know waaay too much about these strangers and they know waaaay too much about us! LOL

Then it came time to give him some "happy juice" (aka versed).  It goes straight into his jtube so it works FAST.  And in just a few minutes, he was cracking us all up blinking and staring.  It was like he noticed something was "off" and was trying to blink it out! LOL All the nurses were calling each other over to come see the funny baby. 

I bought a new dvd player the other day and I'm so thankful I brought it today.  He got VERY mellow and just wanted to chill so I put on some Baby Einstein and we sat peacefully.  For almost 2 hours!  There was a delay with the surgeon prior to us.  Then there was a mixup with the anesthesiologist.  (They couldn't find the records for his previous surgeries and what was used.)  They were being very thorough ... which we appreciate, since he is a very high sedation risk. 

Then it was the most difficult part for me ... the moment they take him away from me.  I have had this moment with SEVERAL of my kids SEVERAL times and I can say it never gets easier. 

I go situate myself in the waiting room.  They called a few times with questions but it was fairly uneventful.  (I like it that way.) 

Surgeon says it all went well and the muscle was already on it's way to pathology.  We might have a preliminary report as soon as 1-2 weeks he said. 

"Before" ... look at those chunka-chunka thighs!  Aren't they awesome?

The stitches are supposed to stay put under the tegaderm (clear tape, above) and then be taken out in just over a week. 

He had a hard time coming out of sedation today ... he was screaming and not himself at all.  That lasted several hours but then his real self just clicked in and he was back to happy baby.  He started complaining of pain and trying to pull off the bandage so I gave him Tylenol with Codeine.  Took the edge off.  And then I covered his bandage (out of sight out of mind). 

I'm still having a hard time with the fact that I did this to him.  I HATE having to decide stuff like this.  I never know if I'm making the right call.  When he's in pain post surgery from something that is life saving (like switching him to a gtube or something like that), I can justify it.  This?  I'm just hoping it will somehow be "worth it".  (Whatever that means.) 

The whole way there I was praying.  Not exactly sure WHAT to pray.  Protection.  Pain free.  No complications.  Those are a given of course.  But what to pray about the outcome?? 

I don't want them to find anything because I don't want there to be anything wrong with him.  But the truth is... something IS wrong with him and I'd love to know what it is and how to fix it.  But what if it's another "fatal" disease?  And the rollercoaster ride starts again?  God has seen us through this far so I know we're in good hands.  But ... what to ask for?  So I asked Him for peace. 

And that He granted. 

Tonight, Manny sits in his high chair playing quietly.  Happily. 

Life is great. 

Apr 7, 2011

Orthopedic visit news

So you all know I take Manny to Physical Therapy.  He's authorized to get up to 3 hours per week but that's almost impossible to schedule.  Most weeks he gets 1-2, some none.  And we're still making tons of progress because I work my butt off at home. 

Anyway, Manny is making such amazing strides.  First we worked on head control. Then came ability to sit. Next came the ability to use his arms.  Shoulders are next.  But there's been very little progress on his legs.  Yes he has some movement (like he can "clap" his feet together) but that's about it. 

Part of the reason it's behind the other areas is because his feet were upside down and inverted in.  We did all the serial casting and then got his AFO's (ankle, foot orthotics).  So now we're all set to start working on leg movement. 

Or are we?  The other day, the PT noticed he has "hip clicks".  That means they kinda go in and out of socket a bit.  That is a problem if he is ever going to do any weight bearing things. 

So what's the big deal?  I'd love for him to be ambulatory.  It makes me positively sick to my stomach that he is so completely STUCK where he is sat.  He isn't frustrated by it thankfully. 

I watch other almost 2 year old little boys and the are running machines.  They are climbing, jumping, getting into every thing.  They are little terrors!  And Manny?  He just has to sit there.  I want him to be able to MOVE. 

So Thursday, we're going to see an orthopedic doctor to have a full back and hip and leg evaluation.  I'm not sure all that will be done but I know they will look at the spinal MRI we had done (which shows normal).  And they will see if they feel he can do weight bearing things or if he will need some kind of orthotic devices on his hips, etc. 

I'm very anxious to hear what they have to say.

Thursday pm:  So I'm home from the Orthopedic visit and he wasn't all that concerned about his hips.  Just in case he did a hip xray and it showed abnormal but expected.  I discovered something today.  Have you ever seen a pelvis xray?  The hip sockets look like (   ).  But his look like this  l   l .  Turns out, everyone is born with hips that are straight up and down.  But then with walking, they start to make that classic looking curve shape... but if you never walk, they don't go that way.  Interesting, huh?  So his are rubbing against each other.  He cleared Manny for standing. 

Meanwhile, I "happened" to run into the motion analysis person there.  She hasn't seen him since early January and was in SHOCK at how much Manny has changed since then.  She was also in shock that he wasn't in a stander already.  She was wondering why they are so overly cautious with this. 

The "bad" news from the Ortho doc though is that he doesn't feel Manny's feet are where they should be.  We know he lost a little ground with his feet placement during the month in the hospital (and the IVs were in his feet).  So he wants Manny to be serial casted again.  If it doesn't work this time, he will consider surgery (but that's not his first choice). 

Last time, Manny kept slipping out of his casts.  The doc suggested casts that go OVER his knees.  That should help them stay put but will also be a pain in the hiney.  But better now than when he is partially ambulatory.  He wants this done immediately. 

Tomorrow ... we're doing the muscle biopsy.  I blogged about it recently.  I hate that we have to do this.  I hate it will cause him pain and there will be a scar.  This isn't like this is "fixing" anything.  It's not surgery to make something better.  Instead, this is just a test.  A very invasive test.  We won't get news for weeks most likely or even a month or more.

And I'm anxious about the choice. 
Anxious that it won't give us news. 
Anxious that it will give us news. 

Apr 4, 2011

Muscle Biopsy Scheduled

Sunday ... Muscle Biopsy ... It's the definitive test for many different diagoses.  A year ago when we got Manny, it was brought up then to do the test.  But then the MRI showed what they thought was end stage Leukodystrophy so why bother.  Then he started to get better but everyone was stuck on that original diagnosis. 

I didn't bring it up as I didn't want to put the baby through unnecessary pain if we could avoid it. 

But ... the Pediatric Metabolic Geneticist said she had some ideas about what his real diagnosis could be.  And of course it would take a muscle biopsy.  So she sent her ideas to both of Manny's Neurologists.  That was a month ago.  FINALLY, the three of them have gotten on the same page.

Tomorrow I will be going to the pediatric surgeon to do a pre-op appointment and to schedule this muscle biopsy.

They're being sooo stinkin' careful.  Why?  Because if the get the wrong spot, it will tell us nothing.  If they don't take the right muscle, it will be worthless.  If they don't order the EXACT right tests, it will not be specific enough to be helpful.  (Like it could come back saying there's a problem ... which we know ... but not identify the problem and we'd be no better off.)  If they don't send it to the right research lab, it could all be for nought. 

Pathology for this is so rare and so specific that they want to get it right.

They think they FINALLY have it all together.

So now we wait for the surgery appointment to be scheduled.  Then we'll wait for the surgery date.  Then we wait for the pathology results.

There's a part of me that doesn't really care what he has.  Besides, no matter what it says, I know God can heal him.  (And IS healing him.)  And then there's this other part of me. There'as a part of me that wants to know what the name of this thing is.

In my experience, sometimes God rescues/heals with just a quick "HELP".  Other times, He seems to want specificity.  I'd love to have the name of whatever this is that Manny has.  And of course I'd love for it to be something that has a full life expectancy!  And while I'm mentioning my fantasy ... why not say that I'd love for it to be an "easy fix".

Monday ...
Saw the surgeon today, Dr. Martinez.  There are now 5 doctors involved in this and they all want to say what is done and how it's done and where it's sent and what tests to do on the biopsy.  Yikes!

They scheduled it ... This Friday.  I won't know until later in the week the exact time but we know it will be early on Friday.  This is supposed to be a day surgery thing and he should go home that same day.  It will be a 1-2 inch cut on his left thigh.  I am not a fan of more surgery.  I HATE that he is going to have another scar on his body.  And in such a visible place too.  And I know it's going to hurt.  And I'm worried about our spring break that's 2 1/2 weeks away.  Will the sand/salt water accidentally get in his cut??  Sigh.

And if you've waded through this (boring) update, then I will reward you with a cute story.  Today at the Surgeon's office, he was in his wheelchair (has a great tray for playing).  He had some cars (his favorite).  He would take 2 cars and drive them (rrrrrrr sound effects too). Then he would say "Crash" and crash them together.  Next he would take one of the cars and turn it over and say "aaaaaaaaaugh!"  and "oh man" once it would land upside down.  Then he would pat the car and whisper, "night night car".  After a little while, he would take the car and right it and say, "All better".  He did this like 100 times!  He was cracking me, the nurse and the doctor up.  Of course I pulled out the video camera and I got "cheeeese".  I even tried to sneak it and he caught me.  So you'll have to settle for your own imagination of this. 

What can I say?  He's all boy!  And I love it.     

Apr 2, 2011

Picture Day

Pure joy

Saying "cheeeeeeese"

My studious boy

Kaley's new reading glasses (She's very happy about them!)

Lizard Earring ... yes, it's live. Yes, she caught it herself

He's a lefty! He can draw lines and circles. Has an amazing pincer grip!

Apr 1, 2011

Orphan Annie

Dan and I have been talking lately about how much God loves us.  We find that a lot of people tend to view God through a very harsh lens.  Maybe we have too "grace filled" of a view but I don't personally think that's possible.

I don't know HOW God is going to see that all of humanity is taken care of ... He didn't let me in on that one.  But I am POSITIVE He has a plan, one that includes mankind.  He says He wishes not one would perish.  He is the one that leaves the 99 and goes after the one.  He is a God of justice but He is also a God of mercy and those are not mutually exclusive.

If I asked you what percentage of humanity is going to end up in "heaven" versus "hell", you'd eventually give me a percentage.  And lately, we've run into a lot of people who think that percentage is very, very small.  Some as few as 10%.

I am horrified by that thinking.  I know God doesn't need my help protecting His image.  But honestly, I can't sit idly by as people say such things about God who defines Himself as LOVE.

But I digress.

As a parent of 6 kids who were all former orphans, I love to speak to churches about the spiritual/physical metaphor of adoption and orphans.  One of my all time favorite topics.

We are all orphans (spiritually speaking) and then one day God adopts us.  (Scripture is very clear about this and uses this terminology.)  At which point we become heirs to the Kingdom of God.

Yesterday I posted the picture of Manny wearing a red curly wig.  It prompted me to sing the song "Tomorrow" from the movie Annie.  The kids had never seen it so they asked if we could get it.

On my way out of Target today, I noticed it on an end cap for $5 so we watched it as a family today after school.

I could see how the orphans of this movie are like some physical orphans of the world still today.  There are literally millions of children who are in need of a forever family.  And that strikes to my soul.  Some are well cared for.  Others are not.

But even more than the literal, I love to see metaphors in things.  So I saw the duality of the physical/spiritual orphan.  Annie was just one of the girls and one day she was claimed.  She was led to the "kingdom" and shown around.  She was granted opportunities not available to the rest of the orphans.  When she first arrived, they asked what she would like to do first.  She said, "The windows and then the doors ..."  Immediately, she started talking about works, trying to earn her keep.

And I thought, "Exactly!"  We are chosen by God.  We're taken in.  And we immediately start trying to do "works" to "earn" the grace bestowed upon us.

The whole movie, she was under the impression that her real family was coming back for her some day. So even when Warbucks offered to adopt her, she couldn't fully let go of her past and the ties to it.  

Oh boy, do the parallels get any easier than that?  How much we hold on to, thinking that our past or something in the world is what we're destined for.  And all too often, people find a way to go back into their old ways and not fully embrace the Kingdom of God.

Thankfully, she eventually realized it was all lies and was able to head towards adoption but not before a huge fight.  I think that once we do the same thing, we become Kingdom minded and we fully embrace Abba, Father.   It's at that point that we stop thinking and acting like orphans and become ADOPTED.

I know of kids who are offered adoption and they cannot fully grasp what is being offered to them.  Some refuse to be adopted and would rather live out their lives as orphans.  And I see the same thing spiritually.  People who are offered the keys to the Kingdom ... offered the full inheritance of the Kingdom of Heaven ... and refuse. They would prefer to live out their lives as orphans.

I am still learning what it means to be adopted.  So many times I find myself metaphorically sitting on the front porch instead of going fully in.  Sometimes I feel grace is tenuous or dependent on my works.  (I know with my head this isn't the case ... but something in me ...)  And then other times I find myself fully climbed up in Abba's lap.

And just like Annie, we all need to learn how to become stop being orphans and become Sons and Daughters of the King.