Drink of My Blood

Jesus said, "I tell you the truth, unless you eat the flesh of the Son of Man and drink his blood, you have no life in you" (John 6:53).  

Most of us read that and immediately know this is about "Communion" or "Passover".  But at the time He said it, many people were offended and actually walked away from following Him.

So why bring this up now?  Need a little controversy?  (I know I will be offending some at posting the following.)

Who has watched the Twilight series?  Or other vampire movies?  Seems to be a very popular theme lately.  And I can't help but be struck by the similarities.  Seriously, think about it.

I personally don't know much about vampires.  I haven't read nor watched the series ... I objected based on the subject matter.  So I went to look it up.  Here is just one link regarding "Vampire rules".  (there are many) http://www.eathorror.com/vampirerules.php

Vampires drink blood.  Christians are to drink of Jesus' blood.  

To become a vampire, you are to drink of a vampire's blood.  To have life, Christians are to drink of His blood.  

Vampires won't go out in the light.    God's way sheds light in our heart. 

They often sleep in coffins or a grave.  Christians are to overcome the grave like Jesus.  

They are indistinguishable from other humans by their looks.   Christians too.  

Vampires are seeking immortality.  Christians too.  (We use different terminology though.) 

Vampires have powers over people, to make their minds weak.  Christians are to renew their minds, bring every thought into captivity.  

Vampires are killed by crosses.  Christians are healed by one. 

etc etc 

Like I said, I'm no expert of the world of vampires, nor do I choose to be an expert.  What I AM creeped out by though is the way this beautiful truth of 'drink of My blood' has been perverted and entered mainstream American and even most Christians.  Many think nothing of reading a series like this or watching the shows.  And I'm disturbed by that.  And I'm aware most of you reading HAVE watched this series and have a completely different take.    

I think the perversion is just too close to me.  

So I go back to the original source ... Jesus Christ.  I will personally take of HIS blood, eat of HIS flesh.  And not the counterfeit ones.  Not even in my fiction or my fantasy. 

And while I'm busy offending everyone, last year I posted about why I don't personally do anything associated with Halloween.  (You can go back to October last year if you want to see it.)

Lest you feel sorry for my kids ... we clean up on November 1.  You can believe how cheap the candy is then.

The dust settles

Today I did what I knew how to do.  Put one foot in front of the other.  Repeat. 

After the news from yesterday, I took the night to call family, prayer warriors, to update the blog and to just talk to Dan about the next steps. 

This morning I woke up with a plan.  One step at a time.  That's it.  As simple as that is, it's harder to do sometimes than others.  My brain wants to go to the end of the story .. to find out exactly how and when and where the miracle will take place for Jacob's life.  And instead, I must live in the moment.  And quite frankly, this moment stinks. 

But I have learned to see the beauty in truly living every moment.  Not trying to escape it or dull it or pretend it's not there.  But to truly feel what I'm supposed to.  To truly experience the good, bad and the ugly. 

See ... in THIS moment, I think I have strep. The baby has pneumomia and may need to be hospitalized again.  Zoe had a clean bill of health last week but today has an ear infection again.  Jacob has a new diagnosis.  Luke is miserable with allergies.  Sam is with a grandmother who is moving across the country.  Dan is looking for work. 

But at this exact moment, I also have so many blessings I cannot possibly recount them all.  So I will just name a few. 

In this moment, I'm thankful for ....

food on the table (more than enough)
roof over my head that isn't leaking
car that runs
6 amazing kids
1 amazing hubby
2 amazing parents
many wonderful relatives
countless friends who are supportive
sunshine and warm weather and blue skies
computer access
great health insurance
experienced doctors who care about us

But I'm also thankful for some specific things about Jacob ....

• God foresaw that he should be homeschooled this year so we would have alone time to talk
• That God healed his brain enough that we can now have amazing conversations and he understands most
• That God gave us this son
• That he is not alone in this ordeal
• That he is no longer an orphan going through this alone like is the plight of most African American kids in foster care
• That he is kind, understanding, compassionate, gentle and strong
• That he is able to finally voice some of his concerns/worries.  (Something I wondered if he'd ever be able to do).
• etc

Today Jacob and I spent most of the time the kids were in school just talking.  He had a lot of questions and concerns.  (Mostly about side effects of meds, not the whole overall picture.)  And by the end we had a plan to just focus on one step at a time. 

By the end, the dust had settled and he was visibly emotionally "lighter". 

We can do this.  One step at a time. 

Another one???

Breathe in.  Breathe out.  Repeat. 

Some days you do this automatically. 

Some days you have to remind yourself. 

History:  Jacob turned 12 in July and had a check up which included a urinalysis.  Came back positive for protein.  Test after test came in showing something is not right with his kidneys and all pointed to Nephrotic Syndrome.  Due to his age, race and gender, the most likely version of that is Focal Segmental Glomerulosclerosis or FSGS. 

Biopsy came back today positive for FSGS.  This is the worst case scenario.  Why?  Because this is the one that doesn't respond to treatment.  If you cannot get the protein under control, you will die. Plain and simple. 

His biopsy showed 20% of his kidneys are currently affected with scaring, hardening and/or atrophy.  This is considered "moderate". 

Once your kidneys are having trouble, your liver gets involved and tries to help.  This causes high levels of cholesterol.  (His are over 300, normal for him is under 160.)   And eventually, the heart gets into the act to try to help the kidneys and you can easily have hypertension or other heart related conditions.  (We will see a cardiologist soon.)  You will also likely get very tired easily and could start losing muscle mass because the protein in the body is decreasing.  (His is.) 

So today ... we were told we should try the treatment anyway ... in case he's the one in a million that responds to drug therapy.  For him, that will be massive doses of steroids (which is not without it's own  horrible side effects).  We try this for 8-12 weeks.  Meanwhile, we'll do a urinalysis every 2 weeks and a comprehensive blood test every month to monitor his kidney function. 

If this doesn't work (which the doc suspects it won't), we have some choices.  All of which are bad.  Immunosuppressants are the most likely next choice, depending on genetic markers. 

All in all, without immediate divine intervention, we're looking at a transplant in 1-5 years.  At the rate he's progressing, the doc thinks closer to 1 year.  Transplant failure rate is high for this condition.  Relapse is about 80%.  Longterm survival is not very high. 

So ... here we go again.  Another life threatening condition. 

It's not every day you're told such news. 

I'm not wanting to get my head around this.  I'm wanting this to be a bad dream.  And I want to wake up. 

So how's Jacob in all this?  He's processing.  He is worried ... not about the statistics and data (he doesn't know those) but he can tell this is serious.  He knows.  He is being a trooper on the outside.  But I'm his mama ... and I can see the worry in his eyes.  Maybe even a slight depression. 

But he is still looking to God, his maker and healer.

143 million orphans ... uh, not exactly

I am giving fair warning now that this might not be a popular post.  But I have this pet peeve about accuracy and truth.

First let's start with the fact that I think ALL children deserve a great life.  A family.  Love.

I know that God is the Father of the Fatherless and I truly believe it is up to US how we care for HIS kids.  And I truly believe that we will answer for how we did that.

I believe in Matthew 25 where it calls us to take care of the "least of these" ... orphans would certainly be on that list.

James 1:29 ... taking care of the fatherless and the widow.

etc etc etc.

Clearly I am "on board" with this whole concept.

So what's the problem?

The number 143 million "orphans" (also seen the 147 million number being thrown out recently, not sure where they get that.)

Up until fairly recently I was spouting that number as gospel as well.  I wanted to cite the source in a book I'm writing so I went looking for the source of that number.  And I found it.  Unicef.  I have no clue how they got this number but this is where the 143 million orphans number comes from.  (See link 1 below.)

Again, what's my problem?

ORPHAN .. I thought that meant had no parents.  But according to them, it's if you have lost one or more parents.  (see link 2 below)

uhhhh ... that changes everything.   So there are 143 million kids who have been identified as "at risk" which would be a better term in my opinion for this group.  (Still needy, yes! But need to be adopted? no)

Of those 143 million, approximately 16 million have lost both parents.  (NOW we're talking Orphan ... well sorta).  Because most of those (number not mentioned in the article) ... are living with relatives such as a grandparent or aunt, etc.  Like I said, I have no clue if those numbers are accurate or not.  These are their numbers.

So how many kids are actually in need of rehoming?  How many live in an orphanage?  In foster homes?  versus those who are living with a parent of family?  How many of these 143 million need to be adopted?  A lot.  Many.  Too many.   But certainly not 143 million.

My point?  I feel betrayed.  I feel misled.  I feel like people keep this number circulating, thinking it's how many kids need to be adopted ... and clearly it is not.

Adoption needs to be a huge push.  I think the Christian community needs to step up bigger and adopt more kids.  (My personal philosophy.)  We also need to do more of "At risk kids" care ... like helping those kids right in their own communities with clean water, safe streets, warm clothing, proper nutrition, good education, etc.  Because 143 million kids need HELP, not necessarily a new mom and dad.

Bottom line ... if you happen to be one of those continuing to use the number 143 million orphans needing to be adopted, would you please consider changing it to reflect the accurate picture of what is really going on?  Especially if you are a part of a bigger organization.  Thanks.

LINKS:

http://www.unicef.org/sowc06/press/who.php  the 143 million number

http://www.unicef.org/media/media_45279.html  THEIR definition of "orphan"

Our trip

cutiepie on the airplane



looking at the airplanes



Manny and I got on a plane on Friday bound for Peoria, IL.  I got asked to come back to speak at a Conference.  Angel Arms Ministry hosted a conference for the caretakers.  They have this incredibly simple idea that every family should be able to attend church ... even if the children have special needs.  If you are not a family with a special needs child, the likely you're saying, "What's the big deal, don't all churches do that?"  But if you are a family with special needs kids, you likely know what I do and that is ... 90% of families with SN kids do not attend church because they feel unwelcome there.  (Very soon I want to write a blog about special needs ministries and the need for them in the Body of Christ.)

Anyway ... for this conference, I got to tell Manny's story ... the first time I got to tell that story anywhere.  I made it through this very emotional talk with only a few tears. 

I love doing funny, uplifting talks.  But this was not that.  It was hard, it was real.  I have doubted my decision many times but pray that people heard what they needed to.  I hope they left with "something". 

The trip itself was great.  Manny is a trooper.  He was very congested when we left and I was worried about his ears.  He can't suck a bottle, chew gum, suck a pacifier ... NOTHING to help his ear pressure.  But he was amazing.  And the only time he cried was when he was bored~!  So we took him out to the swing and he was great. 

On the plane ... extra seat

Friday night he was unusually grumpy and feeling a bit warm.  In the middle of the night he woke up screaming ... 104 fever.  And that was WITH Tylenol and Motrin.  His heart rate was well over 200 and his respiratory rate was 50 at one point.  So clearly, respiratory distress.  Yikes.  Scary.



Saturday the church volunteers made sure he was happy while I was busy with my keynote speech and the breakout session. 

And then were on our way back home.  Manny played for the first flight.  Then he slept the whole second flight (2 1/2 hours).  I know it's a miracle because he was so very miserable just before we got on the plane! 



Little Drummer Boy, during a breakout session



Saturday night was one of the worst nights he's ever had.  For hours he woke up every 5 minutes or so.  He has this blood curdling scream that just jolts you out of a dead sleep.  I eventually told Dan I couldn't do it any longer.  I'd done it for 2 nights in a row and needed some help.  He moved to Manny's side of the bed and took over.  So I was able to take about 3 hours of sleep.  I still heard him crying but it wasn't my responsibility so it was easier. 

We're praying tonight is better. 





The Other Side of the Line

Apparently some of my posts about "Normal" have struck a chord with some and a nerve with others.  I guess that's been my goal.  To TALK about this taboo subject.  Feel free to join in with your own thoughts - on either side of this discussion.

Here's another angle.

Probably most people on the planet have a process something like this:  Pregnant.  Anxious to see if everything is OK with the baby.  Baby is born.  Count the fingers, count the toes, check him/her out thoroughly.  When Doctor gives the "thumbs up", everyone breathes a sigh of relief.  And in the vast majority of births, it goes just like that.  A perfect baby is made.  (Which on a side note, I'm pretty impressed with the Maker/Creator who can do that perfectly over and over and over again BILLIONS of times!)

These parents probably spend most of their life blissfully unaware of what it would be like to have a child with any kind of "disability."  They may have a few brushes with the concern of illness or injury.  But most kids grow up and go on to live just fine.

When that doesn't happen, a family is drug into the world of special needs, quite unintentionally.  And I think most would give anything to have avoided it.  The daughter diagnosed with cancer.  The son in a car wreck and now in a wheelchair.  The child newly diagnosed with autism.  

Or when that doctor doesn't give the "thumbs up" when the baby is born.  A family is drug into this world. I talk to families all the time who are in a state of grief/loss when their child was born with some kind of disability.  I talk to families of kids who are cleft affected and they look like they were kicked in the gut.  They feel guilty.  They ask "why me?"  Eventually most go through the stages of grief and loss and come to a place of acceptance and realize this is an amazing child, their child.  They pick themselves up, dust themselves off and get on being busy with life.  And their new reality.

There is this invisible line between "Normal" and "Not" ... and most parents are drug kicking and screaming across that line.  Many live with that fear of "what if something bad happened?"  It's the worst thing most people can imagine.  They think their world will suddenly STOP if they were across that line.

And if you're a person who is on the "normal" side of the line, rejoice in that too.  It's fine to be thankful that your kids don't do chemo or multiple surgeries in a year of have to be tube fed or ride in a wheelchair.  

But the reality of a family who purposefully adopts a child with special needs is quite different.  We STARTED OUT across that line!  And we realize that there is a wonderful, amazing life on the other side of that line.

Would I wish my kids to have special needs?  No, of course not.  But they are.  And we're not just "making the best of it" like I hear all the time.  We're loving life.  And I love talking to families on this side of the line.  We have an instant bond, an instant understanding of each other it seems.

Eventually we wonder what people are so scared of.  Because life is pretty good on this side of the line too.  In fact *I* would say it's even better, more rewarding!  We have learned how fragile and precious life is.

I missed this in the fine print

So if you're easily queasy, you might want to skip this post.

If you're still reading ... you were warned.

You know how they say, "You can pick your nose and you can pick your friends but you can't pick your friend's nose." ?  Well ... apparently that doesn't apply to children.

How did I learn this valuable lesson?

Well it all started when we were still in China adopting Zoe (24 months at the time), she asked me to do a couple of tasks for her.  We'd had her only 3 days by this point.  She spoke no words but mimed what she needed just the same.  One was that some meat was stuck between some of her teeth.  I was able to get that out and at the same time get my first look in her mouth.  Let's just say, that quick glance made me realize I was going to make her dentist rich.

The other task was to remove the large boogers in both nostrils that were clearly blocking her from breathing from her nose.  Cleft affected kids often have food come out their nose and hers was getting stuck in there.  She also had horrible ear infections which caused her to have extra nose drainage.

So I did what any good mom would do ... I went diggin'.  Never had to do that with the other 4 kids.  But I have had to do this basically daily for Zoe for the past 3 years.  We've tried other things.  She doesn't have enough pressure to blow them out.  And if she tries to retrieve them, she just manages to shove them further.  I know eventually this will end as she will be able to do this grooming task herself.

Honestly, I stopped giving it another thought.

Now with Manny ... he is often congested.  He gets horrible head colds.  He also can't blow his nose.  And of course his arms don't work to be able to get the boogers himself.  So I also clean his nose on a daily basis.

Still ... not so bothered.

But tonight.  This was over the edge.  Luke (7) came to me saying his nose was bleeding.  Sure enough, he has the worst allergies!  He is allergic to everything according to the test the allergist gave him.  And right now, he's miserable.  This bothered him enough that he went digging and made his nostril bleed.

He came to me asking for relief.  Again, I went diggin'.

And it hit me ... how did it come to this?  Where was THIS on the documents I signed?  How did I miss this in my job description?  How come I don't get noticed for this on my performance reviews?  And where is my raise?

Note to self:  Read the fine print better!

As I was scrubbing my hands from this task, Luke came back in the room and squeezed me with the biggest hug he's ever given me.  He was lighter than air.  Relieved.  He said, "Thanks Mom, you're the best."

So I guess I got my performance review and my raise afterall.

I am not normal part 2

Many more thoughts surfaced.  Many people had comments and questions regarding my last post so here's part two.

I don't want anyone to feel sorry for my kids.  Like Manny.  He is so cute, so alert, so alive.  He's a flirt and will talk to complete strangers wherever we go.  Today we were at Walmart and he was saying "Hiiiiii" to everyone.  They would come over to see this baby.

They see him.  They smile.  They start to flirt back.  Then the start to notice he doesn't move "right".  And their happy coos turn into "awwww" and feelings of sympathy.

He is still the SAME BABY.  Nothing changed.  He's still just as happy, just as joyful, just as funny, just as cute as he was 2 minutes ago before you discovered he's a Quadriplegic.  But your perception of him changed. 

And trust me, he doesn't need to have people feeling sorry for him.  Prayers to get even stronger, YES.  But pity, no thank you.  This baby is a survivor.  If you were to see him, you should be rejoicing, thrilled, jumping for joy at all the things he has already overcome.  You should celebrate these victories.  And not just see how far he has to go.

Or Jacob.  Have a conversation with him and celebrate that he talks.  When we got him, they said he was retarded.  They said he was deaf and mute.  They said he would never communicate.  So yes, it's a bit robotic sometimes and he might not look you in the eye.  But do you see how far his journey has been???  He doesn't need pity either.  He needs to be celebrated.

I could go on with the 4 kids in between as well.  They all have their amazing stories of triumph too.  Survival stories.  Overcoming stories.  Amazing feats.  Defying all the odds.

So when I see a child with some kind of "special need" ... it warms my heart.  I immediately begin to wonder what odds they've overcome.  What special tricks they can do that was supposed to be beyond what they could do.  I wonder if their family celebrates them.

I was talking to the Physical Therapist the other day.  Mostly we spend the first 20 minutes or so showing her all Manny's new "tricks".  Things he can do this week that he couldn't do last week.  I work a LOT with him and it shows.  And we got to talking about kids that she can tell haven't been played with or worked with since the last time she was in their home a week earlier.  And to me, that's almost criminal.  So I know that not all kids with "disabilities" or whatever you want to call it, get celebrated.

But that's my point.  I'm not normal.  I don't see the wheelchair or the cleft or the missing hand or the syndrome first.  I see the kid.  I see the victories.

I know most of you reading this are the "Choir" so feel free to sing the next verse of this message.  But daily, I'm shocked at people (that should know better) and how they don't have this perspective.

And it's THEM that I pity.

I am not normal

I am weird.

I know those of you who know me are waiting for the rest of the revelation since you already know that.  Nothing new.

Most days I feel myself quite normal though.  Or at least close to the "norm".  And then I run into a situation and it slaps me upside the head just how NOT NORMAL I am.  (humpf ... hate it when people drag me out of my false reality).

What's prompted the journey this time?

I heard of a baby that was born.  She was normal in every way.  10 toes, 10 fingers.  Perfect.  And it did nothing for me. Happy for the family of course. 

On the same day, I heard of another baby girl who had been born with significant special needs. And my heart filled with love for her instantly.

It's been a year now and over the last year I watched these 2 babies grow and develop.  Baby A hit all her milestones right on track.  Baby B had to work for every single gain she made and still lags behind. 

"Regular" babies are boring.  There.  I said it.

The triumph it takes to sit, to crawl, to self feed, to walk, to talk ... it's enormous for some kids.  Getting to truly celebrate that is so amazing.

And lest you think I'm outta my mind and completely alone I dare to share a comparison.

When you or your spouse came home from work yesterday, did you cheer and celebrate and hug like there was no tomorrow or just the "usual" happy to see them again?

And what about those 33 Chilean miners who went home from work yesterday (by way of hospital first)?  The whole world celebrated the obstacles they overcame!  The amazing feat it to just to survive.

Ah-ha!  Now you're getting it.  The enormous odds and obstacles our kids with special needs overcome.  The shear will to survive is an amazing feat.

And yet so many people don't "get" that.  They look down on a kid with special needs.  Feel sorry for them.  Or mistreat them.  Forget to celebrate them.  Make them feel small.

Like just yesterday, a very nice, well intentioned person was speaking with Jacob about his recent biopsy and the results.  He doesn't know her and she doesn't know him.  But he was standing there talking to her, telling her what had happened and what was going to happen.  I was very proud at how articulate he was, how well he was able to express himself.  He has Asperger's (on the autistic scale) and therefore speaks in an unusual manner, often looks fidgety/nervous, won't do eye contact, etc.  And she starts asking him, "Why are you so nervous??"  At which point he GOT nervous.  He thought he had done something wrong or something to disappoint her/me (his biggest fear).  And it was at that moment that I realized, "Oh yeah, I forgot.  I forgot that you don't see Jacob through the right lens."

Or today I was flipping through some pictures of my latest trip to China.  I saw this baby with a huge cleft lip and I just think he is one of  the cutest babies I've ever seen.  His smile made me laugh.  Because of this lip he can actually smile BIGGER than a child with a "regular" lip. 

I think the past 12 years of my life have shaped me.  I've been immersed in the world of special needs kids.  I find them to be the most amazing people on the planet.  And I forget ... the rest of the world doesn't see them that same way.  And that is a shock to me. 

So if you happen to see me blissfully happy in my version of reality, leave me there.  I love it here.  In a world where all children are celebrated. 

Musings of Jacob

I've noticed some differences of being in the hospital with Jacob versus with the Baby (the only other one I've been in the hospital for recently).  I always thought lots more people came in to see Manny than needed to just because he's cute.  And who comes in to see a (sometimes) smelly, hairy teenaged boy? 

Yes, Jacob might have just turned 12.  And yes, he is 5'8" and 135 pounds.  Wears bigger clothes than I do and the same size shoe as Daddy.  He has a mustache and is getting facial hair.  Has long had armpit hair and lately has been telling me about his hair on his ... knuckles.  (Had you scared there, huh?)  Full teenaged boy status! 

But what people might not notice about Jacob is that he is one of the kindest, sweetest kids around.  He's interesting, funny and compasionate.  He has the greatest smile.  And behind those glasss ... he has the best eyelashes I've ever seen! 

Since he's been home with me, he's noticing all I do.  He told me he used to think my day was easy.  Take the kids to school, clean the house, watch House on TV while eating chips.  (That boy knows me! LOL)  And then he realized it was anything BUT that.  He said he was going to do something about making sure that happened one day.  To have just ONE HOUR of peace and quiet so I could do that.  (I thought it funny that he thought I only deserved one hour, but that's another story.) 

Last night, all of the sudden he says, "Hey Mom!  I Did it!!"  And we both realized we were sitting in quiet, watching House.  He then said, "Thanks kidneys."  And I didn't let him know it but I cried.  I'm crying now typing this.  I told him let's do this again, just him and me, spending some quiet time alone.  But next time, let's skip the painful part. 

And just in case you aren't fully in love with this smelly teenaged boy yet, here's another story from last week.  We were driving to yet another doctor's appointment.  He was in the back seat next to Manny.  Out of the clear blue he says, "What happens to Manny when you and Dad get too old to take care of him?" 

My heart skipped a beat.  I told him that first we would be thrilled because that meant God had healed him and let him live.  Secondly, if God heals him, then we're hoping He heals him all the way and he'll be able to take care of himself. 

And before I could get any further in the story, he interrupted to tell me, "I'll take care of him." 

Do you have any clue how hard it is to steer a 15 passenger van with tears strolling down your face? 

How did I get so blessed to be the one chosen to mother this precious soul? 

Jacob's Biopsy

For the past 2 weeks, we have been doing a LOT of talking.  We looked at pictures on the internet, read many articles about the kidneys and biopsies and what to expect.  All of it seemed to really help Jacob stay calm. 

I love that he is finally able to share his concerns, thoughts and feelings.  Just a few short months ago, he wasn't able to do that.  And as a mother, I do some pretty good "guessing" but it's not the same as KNOWING what is going on. 

Before the Biopsy

This morning we got up very early and my Mother and Father took us to the hospital (about an hour away to this Children's hospital).  By 9:15 he was taken back.  By 11am we were in a room. 

The Pediatric Nephrologist Dr. Perlman said all went very well.  Only had to take one small section and she said it had only one TINY bleed.  (Which is GREAT news!!) 

7pm update:  no bleeding still.  They expected at least SOME amount of blood but NOTHING!! 

So what have we done all day?  Jacob has been resting, playing Nintendo, watching movies, reading books and eating.  Me?  I've been working on the computer, channel surfing, eating. 

(We also had an unexpected visit from a friend, Rich.  Thanks for the salad and fruit (knows me well).  That ensured I didn't have to go down and pick out dinner! )



After, watching TV

 At one point I stopped everything and said, "Listen, Jacob."  And there was just perfect silence.  I don't think I've heard that in MONTHS!  No arguing, no whining, no complaining, no whirring of machines.... NOTHING.  I think they call it silence.  I think I like it. 

So we're in this new Hotel Hospital in St. Pete.  There's a huge 42 inch plasma tv for him, a smaller one for me.  It's a private room with our own shower.  We have a beautiful view of the city and the water. 

And since Jacob isn't in pain (even without pain meds!!) and no complications, this has been more like a hotel.  Seriously!  Hospitals are usually so stressful.  But today was pretty calm (once we got in the room and past the procedure).  The only part he doesn't like is that he can't get up the whole time he's here ... for any reason.  But even that, he's making the best of it. 

Jacob's favorite part???  The room service.  Seriously.  Not typical trays of hospital foods.  It's a menu.  You call up room service and order whatever the heck you want off the menu!  He is in heaven.  I'm afraid he won't want to leave in the morning.   They have a better menu than the top 10 restaurants around combined!  So much variety.  Junk food, healthy food, snacks, etc. 

And for me, I went downstairs earlier and they had chicken ceasar salad (huge) for under $5.  I couldn't eat it all. 

We realized this is the first time that he's been in the hospital since he was born.  And since I wasn't there with him then, I've never spent time with him in the hospital.  In fact, it's the first time I've spent a night alone with him.  So we're enjoying just "hanging out". 

I just asked Jacob if he would like to share anything.  He said, "Just what I'm enjoying." 
Me:  What's that?
Him:  The resting and the quiet. 

We are so very thankful for all the prayers that this go smoothly.  And we will be expecting results in about 2 weeks (which we will of course share).

Biggest and Littlest

10/10/10  ... what a cool date.  I only wish I had cool news to go with it.  But alas, I have an update of life in general.

Manny ... last night he had another one of his really, really rough nights.  He wasn't quite himself yesterday, not as easily consoled, etc.  He went to sleep easily last night but woke up an hour later and for the next 3 plus hours ... SCREAMED!

I would play, rock, hold, etc.  NOT trying to put him to sleep, just trying to comfort him.  Things would work or a few minutes but then right back to it.  It was the cry of pain.  Tylenol, etc. did nothing but we tried anyway.

About 1:30 he finally fell asleep.  But from then until 7am, he woke up every 5-15 minutes all night long.  Not exactly fully awake, just crying.  I would readjust his position and it would help sometimes for a few minutes then back to crying again.

This morning, I gave him to Kaley (age 10) and asked her to play with him.  I ended up sleeping for 2 hours ... the only sleep I got.  I LOVE that girl!

And then today, the baby just can't get happy for more than a few minutes at a time.  Then about 1 hour ago, he has a fever.  It's climbing.

I had the brilliant idea to go to the used kid's store and see if they had a swing big enough for him since we have nothing like that (Never needed it).  He tried out several and I left with the one that made him giggle.  I am praying it helps him sleep tonight.  And yes, I stocked up on extra batteries!   (Experienced Mom you can tell.)

Now about Jacob ... 6am we'll be headed out the door for the biopsy.  He's a bit nervous but we've talked it all through.  I think we're both anxious to get the results (2 weeks).  He'll be in the hospital overnight, observed for possible bleeding complications.  I'm hoping this hospital has internet access so we can update (not the usual hospital we go to so I don't know).

Thanks for all the prayers for both of my boys, biggest and littlest.

Venting alert

My blood is just BOILING. 

I guess after 6 adoptions I should be used to this ... but I'm not.  And I don't think I SHOULD ever get used to this!  It's discrimination.  It's not right. 

Let's say I call or go into a Doctor's office.  I fill out the paperwork or give the required information.  Then somehow they find out the child is adopted and now new rules apply.  Like I took Sam (Caucasian) into a place and even though "Adopted" was on his paperwork, they never asked for anything additional.  But Jacob (African American) goes into the same office and the same paperwork is marked the same way and they need court orders and everything. 

Here's the real scoop:  I have a birth certificate that says
Child's Name:  Jacob Gore
Mother's Name:  Beth Gore
Father's Name:  Daniel Gore

There is NOTHING on there that indicates in any way that this child was not BORN to me. 

So today I called a former doctor of Manny's to get some records faxed.  (Just found this doc's info.)  And I tell her upfront "We have adopted a child that was a patient of yours and we're needing the records faxed to his new doctor please."  And I got read the riot act.  She was so completely rude.  Asking the strangest questions ... NEVER run into this before. 

Basically citing me patient confidentiality and all.  Which is fine, all for that.  But I'm his mother and I have LOTS of proof of that.  I offered to fax his birth certificate (saying his name, my name, etc).  That should be MORE than enough.  But no, she wanted the adoption records.  (Fine, I can do that.)  And then she started saying that only my adoption agency could send this, that she'd have to have an affidavit, etc etc before she would even RECEIVE anything from us as "Proof". 

I told her - If I would have called in and said, "Hi, I'm the mother of XX and I'd like this..." that she would have immediately given me what I wanted.  It's because I was HONEST with her upfront about the adoption (and resulting name change) that caused he to basically treat me like a lying criminal. 

And instead of seeing my point, she went back into Patient confidentiality.  I am his MOTHER!!!!!  Every legal right in the world, as if he were born to me.  (Those words are actually in the oath we take in court and on the court records.) 

I hung up.  (Not a proud moment for me ... but I figured as upset as I was, it would be better to stop than to say something I regret.) 

I completely respect patient confidentiality issues.  That's a given.  I was willing to give her tons of proof of who I was.  But she had such a wall of discrimination in her mind that there was no way around it.  (I'll just have my doctor's office request the records so we'll get it.)  My fight isn't with this receptionist. 

I think this pushes my buttons on so many levels.  But mostly, it's a slap in the face of all adoptive parents saying that no matter what classes we take, hoops we jump through, legal steps we take, etc ... we will never be "REAL" parents in the eyes of some people.  And that is not OK with me. 

Funny Little Baby

Tonight I was noticing that I have a lot of pictures of Manny that I haven't used yet, hoping I'd get around to a blog entry for each one.  But alas, the life of a mother of 6 (2 of which are always at the doctor it seems), who has a part time job, who takes motivational speaking engagements, etc. leaves me not as much time blogging as I would like.

Then it hit me ... I could do just a photography layout with just a small caption.  (Duh).  So hope you enjoy some random pictures of our funny little baby. 

Baby dedication day in Baseball Outfit

Look who is sitting in a buggy by himself!  Only a few minutes but he did it

And look at me sitting in a chair!

"Hensinger Collar" ... just got it but PT says we don't really need it!

Sitting independently in an Elmo chair

See? Proof he's holding his head

Wearing Mama's glasses

Goo-goo goggles like in Dr. Seuss

We be jammin'

Love how he is looking adoringly at them (not to mention sitting well)

Now you know why I am not always quick on my computer ... I have to share

Kaley rigged up this baby car so he could ride.  She's so inventive and he loved it

The Good News

You know how Jacob has been diagnosed with Chronic Kidney Disease and possible kidney failure?  (Not the good news).  Well, they say it might be genetic so they wanted Kaley tested.  She will be 11 on 11/11.  (Cool, huh?  Oh and another quick number ... next year on 11/11/11, she will stop being 11 and turn 12 ... not many people have such a cool birthday.)

Tests came back today NEGATIVE for Kaley!

I wasn't aware of how anxious I was about this possibility until I got the good news late this afternoon!  I breathed a huge sigh of relief and actually broke into tears.  I felt the stress rolling off of me.  I know that if she did have it, we'd be in for the long haul.  We'd fight that too.  But truthfully?  I'm not ready for another big fight.

2 kids with a life threatening condition at a time is enough!  (Too much really, but you know what I mean.)

She will continue to have urine tests every year probably for the rest of her life because she has a first degree relative with this ... and if she ever develops it, we'll have caught it early.  But in the meantime, NO Kidney disease for Kaley!

Now about Jacob ... finally got the biopsy scheduled.  It's for 10/11 at 9am.  He will be in the hospital for a 23 hour admit.  Test results won't be back for about 2 weeks.  We'll schedule with the Nephrologist for a follow up near the end of October to hear the news, the plan, etc.

In the meantime, MY plan is for God to do another complete restoration like He's doing with Manny!  I'd love to baffle a new set of doctors.

I'll update when there's news.

6 months later

Every wonder what Manny was like before we got him?

This video was taken during his hospital stay before his gtube surgery.

Look at those GORGEOUS EYES! 

He was 8 months.

(To hear the videos better, you may need to scroll down to the bottom right and pause the music playing.)

Pretty poignant to me to see just how little he could move.  His hands are stuck in "dystonia".  His hands do move a tiny bit but not much. And you can see his legs/toes move a tiny bit.  And you have to realize, this lady was working HARD to get his to laugh.  And this was the maximum movement he had. 

And now to think where he is now!  6 months later.  (See the video ... from about 3 weeks ago so he can do even  MORE things now!)

http://www.youtube.com/watch?v=fbcSAVNSslM

He is holding his head independently (for up to an hour at a time).  He can spontaneously say about 20 words.  Mimics many, many words.  He can sign about 15 words. 

His his hands are not "stuck" any more.  He used to be able to hold a sticker, now he is strong enough to hold a cell phone.  He can get his hands to his face and rub his eyes or nose.  His shoulders are starting to get into the act. 

His legs can now use the push and pull movements (think bicycle).  He cannot support any weight on them (yet) but he has reflexes in them (he had NONE before). 

One of his favorite activities is pulling objects from a cup and putting them back in.  He can do a task like this for an hour!  He has a very, very long attention span. 

I could go on and on about how proud I am of this little guy.  Every day he does something new he couldn't do the day before. 

Looking forward to the day when he can eat by mouth, crawl and walk!