Might step on a few toes

Daily I muse on the various aspects of my life.  One that comes up often is the issue of faith.  With 6 kids, all adopted, all with special needs, 2 with potentially life threatening conditions ... I have plenty of chance to do that.  And as a person known to be a Christian, a woman of faith and a Pastor's wife and daughter, other people often give me their take on "faith". 

Quite frankly, some I just don't agree with.  And I'm well aware that *I* might be the one who has it wrong.  But some people's definition of faith ... uh, creeps me out. 

There is one version I hear a LOT which is most bothersome to me.  And that is the "deny it exists" statements and call it faith.  "Pretend it's not there" and call it faith.  Now of course people don't use those phrases but it's what they mean. 

A conversation might go like this...
Other person: What's going on with Jacob?
Me: He was newly diagnosed with a kidney condition.
OP:  What is it?
Me:  FSGS and it's quite serious.  Unless God intervenes quickly, the doctors feel he will need a transplant in less than a year.
OP:  Well we'll just say it's not there. 
Me:  (insert the sound of crickets here)

I've had MANY MANY conversations pretty close to this.  Wording changes.  Sometimes it's about Manny or Dan's job situation or any other various things we might be dealing with.  But the sentiment is the same every time. 

Now let me clarify.  I believe as Christians that we  have a Heavenly Father who is able and willing to be a Healer.  I have seen Him heal.  I have been a part of many, many miracles.  So to ME, the phrase, "I will pray and believe in Jacob's healing."  THAT makes sense to me.  

I also believe in the verse that says (paraphrased) that we should call things that are not as though they are.  So to me that would be saying, "I believe Jacob is healed." or something similar.  That works for me too.

But to deny something factual and call it faith?  hmmm.  That one challenges me.

I've heard it in various forms ... don't accept the doctor's report is one I hear a lot.  And yes, I don't believe a doctor can say what exactly is going on.  They certainly are guessing a lot of times (educated guesses, but they are guesses).  And I don't believe they are accurate on prognosis with dates of death often.  (God gets to number a person's days!) 

But let's do a hypothetical.  Say I fell and probably broke my arm.  Feels like a break.  Looks like a break.  Acts like a break.  Xray shows a break.  I would probably believe it is broken.  And it would seem stupid for someone to tell me it's not broken (in faith).  Or to not believe the doctor's report (in faith).  Or to just keep on using it like you always would (in faith).  etc etc.

But I've heard those things when it comes to Jacob and Manny.  Like for Jacob ... he has the symptoms.  Blood tests confirm.  Urine tests confirm.  Biopsy confirm.  But I'm told not to accept the reports.  And my brain cannot figure out what these people are saying/meaning.  It truly confuses me! 

So what DO I believe?  I believe that I should (and I do) go to God and tell Him the situation.  I ask Him to heal Jacob of this condition.  Pray for the complete healing.  Pray that Jacob will live a long and healthy and productive life.  (I ask, seek, knock.) 

I guess the bottom line is that I'm challenged by where some people draw the lines between "reality" of what we see and experience around and where that collides with faith and the things of "heaven". 

I can only go to scripture.  Hebrews 11:1 says (again paraphrased from the NIV) that Faith is being sure of what I hope for and certain of what I do not see.   Or the KJV says that Faith is the substance of things hoped for, the evidence of things not seen. 

So I HOPE for a healing for my boys and I keep hoping and believing for it even when I don't see evidence yet.  And THAT is faith. 

At least that's what I believe. 

What do YOU believe?

He's going to be a tv star

About a month ago, we were contacted by a local Christian TV production company.  Mark (our main contact) had talked to Ed (a friend and local pastor).  Mark was looking to feature a situation that needed prayer and Ed thought of Manny. 

Mark, his wife Angela and their two beautiful boys Lucas and Josiah came to our leadership church meeting this past Saturday night.  Josiah is almost 1 and is deaf.  It was so neat watching him run around, getting into everything.  (He's quite a good walker already.)  I couldn't help but see him and then think of Manny and want to press in harder for his complete healing. 

Manny is 5 months older than Josiah but can't do most of the things Josiah could do.  Even just the simple thing of eating.  Josiah ate Cheerios (a completely "normal" 1 year old thing to do).  But Manny?  I plugged him in.  Josiah ran, sat down, stood up, crawled, picked up toys, threw a ball ... you know ... regular 1 year old boy things. 

But true to Manny form, he can get just as much enjoyment from WATCHING people do something fun as doing it himself.  That statement chokes me up.  I can't tell you how significant that is.  (I'll have to write a blog explaining just that sometime and why it's so profound.) 

Anyway ... we all agreed it would be a good idea for us to share Manny's story.  Last night was the time we chose to do it.  3 hours later, we had the 5 minute segment completed. 

They will have to edit it, put music to it, etc.  They say it should be ready in a couple of weeks.  When it's ready, we'll be sure to share the details of how to see it. 

But in thinking about what we wanted to say ... it brought it all back up.  We told the story from the beginning up to where he is now.  And as the camera rolled, it's amazing how the emotions are all still just so fresh, so raw, so real.  I have no clue if that will show up on camera or not ... but I was choking back tears telling his story. 

I was just as choked up by how far he has come!  (Like my last blog entry "You're not going to believe it").  You've come a long way, baby!  Like the picture at the top.  I bought him this new art chair.  Because the top angles just right, he can sit and write or read a book.  He can even flip the pages.  And I'm in Awe of God at being able to say that!  No one ever thought he'd be able to do any of those seemingly normal things. 

And at the end of filming I said something like this:  We have a BIG God.  He has done amazing things in Manny's life.  But he still can't eat, or walk or do the things a 16 month old should be able to do.  We're asking for his complete healing. 

Can't wait to see it.  Hoping his story touches people.  I even pray that people watching his testimony will be healed by watching it.  We're so thankful for the opportunity to share his story. 

Thanks Mark and crew!

You're not going to believe it!

So you know we got Manny 7 months ago and he could move ONLY his eyes?  Well ... one step at a time and here are some things he can do now. 

VERBALLY: 

He says about 50 words.  Such as Mama, Dada, Hi, Bye, uh-oh, cat, meow, yeah, etc. His most common word is "Up" followed by "Go".   

He says several 2 word phrases.  Such as Hi There, Hi (name), Love you, etc.

He signs about 15 words.  Such as milk, play, music, song, etc. 

When asked "Where is the baby?" or "Where is Manny?"  He points to his tummy (with both hands) and says "Manny".  Well ... actually he says, "Nanna"  but it's close. 

When asked "How old are you?"  He raises one finger and says, "One." 

PHYSICALLY:

He can move both arms. He is starting to lift his arms.  Not very high yet but it's movement. 

When he wants to push a button on a toy, he uses one finger to push not just "slap" at it with his whole hand as most babies do at this age.  (Shows fairly high intelligence. My mother is a PhD and has done thousands of IQ tests of babies and children and she estimates him at at least average intelligence if not high average ... which is shocking since they thought he was not even "there" mentally!) 

He is moving his legs.  He cannot put any pressure on them but is starting with mild resistance.  And he can "kick" a ball while in a seated position.  It as to be a tiny beach ball but it's so exciting. 

TODAY: 

Today was the most exciting improvement though!  Yesterday he got a new device called a TLSO.  It reminds me of a turtle shell.  He doesn't mind it at all.  Makes him harder to hold since he is heavier.  But so worth it.  Yesterday he wore it about 30 minutes during Physical Therapy. 

Today I decided to take him out in it.  We put him in a regular high chair ... which he has NEVER NEVER sat in before because he can't do it.  (We've tried.)  But today ... no problem while wearing his TLSO! 

He sat there for about an hour.  And while there, his head never went limp.  His arms seemed a lot stronger.  He seemed a lot more "stable."  He really enjoyed being AT the table with the kids and not in a stroller or in my arms. 

So I thought why not test out what else he could do?  So I put him in a grocery cart.  And I just cannot believe how well he did.  He looked so "normal".  He was sitting.  Arms were on the handle.  Head was looking around at all the stuff.

And then I noticed ... his legs were swinging.  He seemed so stinkin' happy!  It hit me, his legs have never been at this angle before so he's never felt that feeling before.  But he loved it. 

Then tonight, he was sitting on someone's lap and I noticed ... he was still able to swing his legs.  It's like he discovered them and now he can do it easily. 

Our Physical Therapist is NOT going to believe him tomorrow when I take him to PT.  It's been a HUGE leap in skills in 24 hours. 

I know it's hard to describe this in words so I hope you're understanding all the leaps and bounds this kid is making.  It's truly MIRACULOUS!  I know people use that word a lot and don't really mean it ... but in his case, it's the most accurate description of what is going on with him!  Even his Doctors and Therapists are using that word. 

Thank You Lord! 

Happy Birthday Kaley

11-11-99 a tiny little girl was born in a home in Tampa, Florida.  Her birthmother called 911 after the birth.  Paramedics arrived and the baby was taken into foster care under the "Safe Haven" program as the birthmother said she wanted the baby adopted.  She had several medical complications but eventually was released from the hospital. 

2-14-00 we decided to be her parents!  One of the happiest days of my life.  Starting the next day, I visited her every day until our foster/adoption paperwork came through.  

3-23-00 was the first night she slept in our house.  While she was "only" a foster child at the time, I never even realized there was a chance she wouldn't stay with us forever.  (Glad I didn't know that.)  That night she was sleeping next to me and we were just looking at her, staring at her.  We prayed over her that night.  And there were times I would cry tears of happiness as I prayed ... and every single time, without fail, she would let out a small whimper every time.  It was then that I knew we were connected in a unique, special way. 

Today, on 11-11, she turned 11.  Cool birthdate, huh?  We made cake.  Kaley wanted a cat for her birthday but settled for a cake version.  This was entirely made by her.  She mixed it.  She baked it.  She frosted it.  She decorated it.  So creative! 

I got her this new jean jacket and really cool new purse and couldn't believe how grown up she looked! 

What are some special things about Kaley?  She is one of the most responsible people I have ever met in my life.  She has this innate ability to just "know" how things work.  She is incredibly creative.  She thinks outside of the box.  She is becoming a great Mama type person.  I think our hearts beat as one.  I can see so much of myself in her. 

One day when she was little she told me she wished she had been grown in my tummy.  She was angry she wasn't.  She wanted to go back to little and do it over again and that way our skin would be the same, our hair would be the same, she would be 'big' like me.  Eventually she got past that and seems to understand.  But what she hasn't come to see yet is what *I* know ... she was born in my heart.  And THAT is why our hearts beat as one. 

My tiny, precious little girl who is as big as anyone I know.  I Love You Big Girl!

Today not so good, let's try again tomorrow

Cuteness at Wendy's the other day

Manny slept through the night for the first time since we've had him!  Not one peep.  Aahhhh ... Can't tell you how wonderful that felt.  I was actually feeling semi-human today.

Headed to the social security office (I know ... don't be jealous).  Had to get a new number for Manny ... long story short, his number is being used by ... ah, um ... let's just say "someone else".  It's amazingly hard to prove someone is who they say they are.  Even with an adoption paper, guardianship papers, birth certificate (which states me as mother, etc.).  But eventually our good attitude and his charming smile got us out of there.

As I headed out of that office, got a call from the school that Zoe was throwing up.  (Never good ... one gets it, it's usually just a matter of time until the rest think it looks like fun so they try it too.  It started Saturday night with Jacob.)

Meanwhile, Manny woke up with a clogged gtube error message.  I tried to get it worked out before we left but couldn't so I waited until his 11 am feed to do it.  And of course, it was really clogged.  I tried all the tricks.  I googled what to do.  Did everything.  An hour later, he hasn't eaten since 5am and nothing is going in.  He is completely dependent on this thing ... NOTHING can go in any other way.

By noon I call the GI with the news of our emergency.  Let's just say that by 5pm they had still not called back.  SERIOUSLY?  I will be on the hunt for a new GI tomorrow~

What they don't know - is that was going to the ER by 3pm if I didn't get it to work.  I FINALLY got it to work just before then.  He got fed.  All was well.

What else?  I have sinusitis with ear infection and a fever.  Only 101.

Next got the kids from school.  Was supposed to go tonight to have parent teacher conferences but ... just don't feel like it or dragging Zoe out in it.  And it's raining a lot today so we'll just have to skip that.

OK ... so then homework with less than a good attitude (mine, the kids were fine).  Kaley cried.  They gave her this sample test and she couldn't do any of the problems on it.  And I told her that meant they haven't taught her how to do it.  I was upset at THEM, not HER.  Eventually, she quit crying.  She is hitting that age where hormones go haywire and I could blame it on that but truthfully, I think they just expect too much out of her.  She is trying but just doesn't get it yet.  I'm going to have to work on that.

So as we do homework, I hear the cat hurl.  Of course out of our WHOLE HOUSE, he chooses to throw up right on the baby's gtube bag, tubing and extension.  Seriously??  So I cleaned it up, threw all that out.  Thankfully I have extras but only because I have great friends.

Meanwhile, I always do my own hair coloring.  And I wanted a change.  A SLIGHT change.  Bought something called "Light golden blonde".  Let's suffice to say I now am twins with ELMO!  Yikes.  Can't get this color out fast enough.

Finally, as I write this tonight at 7pm, Manny is starting to run a slight fever.  His antibiotics were finished yesterday.  Zoe has a double ear infection (with a horrible cough and a lot of pain).

I'm about to head the gang to bed.  PRAYING we get some sleep tonight.  And praying tomorrow is a heck of a lot better than today!!

Misc happenings around here

Zoe, 5 so much wants to hold Manny all the time but he's very big and very difficult to hold.  But every now and then the stars align and she is able to hold him.  The other day she announced, "I want to be a doctor so I can fix Manny."  My heart just about burst with pride. 

Waiting at the Doctor's office

Kaley, 11 is in 5th grade.  Her school has the "Teriffic Kid" program and her teacher nominated her.  He wrote me an email and said he wished he could nominate her every day.  He wrote the sweetest things on her certificate.  A keeper for sure.  And I know it's smal but if you look in the smack center of the picture, the little one in the pink jacket is Kaley.  All the others are 5th graders too and they TOWER over her. 

Kaley gets "Teriffic Kid" award


Perhaps you've heard me discuss my dislike of Chuck E. Cheese.  Why?  It's soooo loud in there.  But the kids love it - including Manny.  Kaley loves taking him along on the rides and he cries when they stop. And just a bit more about Kaley ... she is sooo amazing with Manny.  He hadn't been sleeping at all during these past 3 weeks with pneumonia.  So this Saturday he was up very early and I was dead.  I took him to her and asked if she would watch him while I slept.  She happily got out of bed and took care of him as I got 2 amazing hours of sleep.   

Chuck E. Cheese

Karate moves

This picture is sweet and sad all at the same time.  Manny HATES being on his tummy.  He cannot lift his head at all, puts pressure on his gtube, etc.  We do it anyway.  But he cries the whole time like he's being tortured.  This day, the Physical Therapist brought this big red ball to see if he would like it better this way.  Uh ... no.  So he was bawling his eyes out during this picture.  And Jacob heard him from the other room, came in and put himself in this position to play with Manny.  Then *I* was bawling practically.  Gotta love those boys. 

Physical Therapy

Today, Kaley's teacher from last year (Mrs. Ryan - whom we love by the way!) gave Manny these new rattles.  2 for his wrists and 2 for his feet.  He was amazed by the rattling he could do.  Dancing.  Giggling.  They were quite the hit.  What a great gift!

Enjoying the new rattles

 So if you're squeemish, you might not want to look closely at this photo.  But Zoe lost 2 of her bottom teeth on Saturday.  These are the first to come out by "natural means".  She is missing several on the top, had a few removed, etc.  But these are her first actual "big girl teeth".  She didn't wince or anything.  I think she is made of iron or something ... she has the highest tolerance of pain of anyone I've ever met. 

Zoe loses 2 teeth at same time

Over the past 3 weeks, Manny doesn't sleep much.  He tries.  But he struggles to stay asleep for more than 5-15 minutes at a time.  It's so very difficult to deal with this for so many nights in a row.  (Guess I'm showing my 41 years.)  I even did medical foster care for about 9 years and had many, many drug addicted babies.  THIS is MUCH, much worse. 

But eventually ... he goes back to sleep and he looks like such a sweet little angel.  It's impossible to get mad or frustrated with him too.  We still are believing for that amazing miracle that he is completely healed and gets to live a full, long, complete life.  But this struggle has taught us to enjoy every single moment.  To treasure every day.  None of us ever know how much time we have with loved ones.  And we should make the moments count. 

Gotta love that sleeping angel