The Supreme-est Court

I don't know how it REALLY is, but this is what it seems like to me regarding Manny.   I know this will challenge some of your thinking, conflict with some of your religious beliefs and may even offend some... not my intent.

Think about a court of law.  A "Death sentence" was passed on Manny.  I don't know who the Judge was or what the evidence was, etc. that made him render that decision.  But that was the verdict.  And it was given to him prior to birth. 

In our country, we have a court of appeals ... all the way up to the Supreme Court.  It's a way of taking a verdict that is not satisfactory under the law and appealing the verdict.  We had to do that for a family member years ago.  A judge issued a very bad, very illegal verdict and we appealed to the next court level and had it overturned. 

All the evidence up to this point has been stacking up on the side of "Death sentence".  Every doctor has washed their hands of trying to help Manny in any way other than making him feel comfortable.  They see it as a foregone conclusion that he will die and the only question is if it's 1 month or 6.  There are no cases in which children with this diagnosis have lived.  None.  Zero.  It's fatal 100% of the time. 

For Manny, we have been entering new evidence.  We have asked others to put in their appeal on his behalf.  And we're making our closing argument.  But this time, it's before the Righteous Judge.  The Supreme-est Court in the Universe.  We're admitting into evidence the fact that Jehovah Raffa is his healer.  We're claiming that the stripes of Jesus Christ paid for Manny's condition too.

Somehow it brings me comfort to know that the decision isn't in the hands of Doctors.  It's not in Dan's hands or My hands.  It's not up to me saying the right prayer or making sure I do the right things.  It's not about me begging a certain number of hours or fasting a certain amount of days.  It's NOT UP TO ME.

I know that this Judge is considering all the sides.  I know that if He leaves Manny with us ... that will be an amazing gift.  And if He chooses to take him ... well, that thought is just unbearable.

So right now, it feels like that moment where in a courtroom where the Judge is out of the room deliberating.  We are waiting for the verdict.  And our only hope is in knowing this Supreme Court Judge is loving and fair and merciful and righteous.  He loves Manny more than we do.  And the verdict is in HIS hands alone.

Soon God will render His verdict. 

We all pray it's "Life". 

Tight Rope Walker

I know if I were you, I'd be wondering what was going on in my head right now.  While I won't share it all (you might call the looney bin on me), I can tell you some of my thoughts and feelings.

I feel like I'm walking a tight rope and if I tip to one side or the other, tragedy will happen.  I know it's not true.  I know that I, Manny and my family are safe in the palm of God's capable, loving hands.  But it FEELS like it.  I don't feel like I have to be perfect or "get it right" but I do feel like there are some choices that have worse outcomes than others, some that leave bigger scars. 

During the day, I try my best to keep it together.  I go about my daily life like all is fine.  And then I run into these IDIOTS (I don't use that term lightly) who have no clue and say hurtful things.  I Know they don't mean to hurt but they do.  Like yesterday, I was in the doctor's office with Manny.  He was asleep so he was on oxygen.  I sat quietly minding my own business as to not have questions.  When she asked how old, I simply said 11 months and went back to thumbing through  magazine.  I knew it would not end there. I knew she would push the conversation until SHE felt uncomfortable and I was trying desperately to avoid HER feeling stupid. 

One question led to another and each time, I answered matter of factly.  She even felt the need to tell me we had the wrong type of oxygen tank.  That a baby this small should have the small type.  I told her it was about how much oxygen was needed and he needed the full size tank.   I'm feeling judged by this stranger on what type of oxygen we use!  Ugh

All the while, I knew what she really wanted to ask was why he was on oxygen.  I could feel my patience for her waining.  I even got up to walk away so she would get the hint that the conversation was OVER ... but she pushed it.  "He have asthma?"  no.  "He have cystic fibrosis?"  no.  "Why DOES he need oxygen?"  And as I said it, I knew she would feel like a complete a$$ but she wouldn't let it drop so I told her.  "He was just diagnosed with a terminal brain disease.  Kids with this die of respiratory failure.  So he needs oxygen." 

I could hear the breath leave her body.  She sat rigid in her seat and barely took another breath.  We sat in silence for another 5 minutes or so until her child was called to be seen.  I'm sure she was relieved by that.

And of course I felt bad for her.  (I know most of you will say I shouldn't have ... but the truth is ... I did.) I don't know how to stop the conversation yet.  But I'll learn.  "It's none of your business" doesn't seem quite right but it's actually the truth.   See?  I fell off the tight rope yesterday. 

A long time ago in America, people would wear black arm bands to signify a morning/grieving period.  It gave people the heads up to be extra careful with this person during this time.  I kinda wish we still had that.  I would wear one.  Then again, this kind of woman would have asked, "Why you wearing the arm band?"   So I probably couldn't win. 

But as I dusted myself off and got back on the tight rope I learned something.  It's going to happen.  I AM going to fall off.  I WILL get some of this journey "wrong" or wish I had a "redo".  But I also know I'll get a lot right.  And I don't want to miss one step of this journey. 

Yesterday he had a very, very bad day.  He was having a lot of symptoms and it was very scary.  But today, he is a little more back to himself.  He was laughing and smiling at me.  And it makes every part of this journey on my tight rope worth it.

New Friends

Thanks to a college friend, Manny received new "Friends" today.  He loved them!  He even took his nap with Elmo today.  Thanks George! 

We went to the Doc today.  She said his lungs sounded GREAT!  We also discussed how to proceed with physical therapy for him (enough to help but not frustrate him), getting some more equipment to make him more comfortable, setting up the swallow test to see if he is losing any more skills (which increases the risk of aspiration), and even arranging to get us a handicap sticker. 

A quick story about the handicap sticker ... I have a 15 passenger van.  It doesn't always fit in regular parking spots so I usually park waaaay out in the back 40 so it doesn't get in any one's way.  And also, it lessens the chance that someone will pull beside it.  If someone DOES pull beside it, I cannot open the door enough to get his car seat in/out.  And if someone pulls too close to the back, I cannot get his stroller in/out.  (And this happens all the time ... very frustrating.)  So today, the ONLY parking spot that would fit the van at the doctor's office was one in the next parking lot over.  I loaded him and his stuff into the stroller.  He was asleep so he was hooked to oxygen.  I'm pulling the oxygen with one hand and pushing the stoller with the other.  I'm dragging all this through the dirt, the grass to get to the office.  I was exhausted by the time I got there (not to mention the contortions I had to do to get the door open).  So I thought to ask the doc, "At what point do you think he qualifies for a handicap sticker?"  and she said, "TODAY!"  So I will fill it out tomorrow and go from there.  Hopefully no more incidents like this any more.  (It's the little things!)

Regarding the GI doc ... he wanted Manny's tube to be changed to a different type of tube a few weeks ago but he got sick.  I called today to get the appointment set for the surgery and now there's trouble with the adoption issue.  They have some weird policy (that the other docs don't have) and are making us go before the Judge to get a thing signed.  I was so upset that I called the social worker to see if she would call the doc office directly.  It's absurd what they're asking so ... hopefully she can straighten it all out.  In the meantime, his tube is broken and we're having to make due with what we have.  Trying to hang on until the surgery ... lest it become and emergency operation. 

Many of you have asked about how Manny is doing.  Quite honestly, we're seeing decline in his skills, his alertness, etc.  Doc said I might need to increase his oxygen levels ... to include awake times.  My heart is heavy every time I see him struggle for a breath. 

We're still very much praying for the miracle of complete healing.  At this point, we haven't seen it yet.  So we are holding on to hope.  We're getting strength from all of you and knowing you're all praying too.  We can feel it.  Thanks!

We are so very thankful to all our friends!

11 months old

Manny is 11 months old today.  We got him exactly 2 months ago today - March 26.  It's one of those time warp things where it seems like just yesterday but at the same time, seems like he's always been a part of us. 

We're slowly getting used to the whole new routine of all the medicines and machines.  Like you should have seen me at Goodwill today.  Had to get Jacob some swim trunks for a field trip tomorrow and I had all 6 kids with me.  Manny was sleeping and I had his GIANT oxygen tank in the back of the cart.  It seemed "normal" enough to me... except when I'd catch people staring at us! 

We head tomorrow back to his Pediatrician.  (Love her.)  And I have tons of questions I'm hoping she can answer.  Theoretically I should be there with no other kids so I should be able to ask them all.  I say "theoretically" since there's been at least one kid sick and out of school for the past 2 weeks.  I think all will be back tomorrow though.  (They had the same flu that landed Manny in the hospital and they took turns having it for 3 days each.) 

These pictures are of him getting his nebulizer treatments.  I laid it down on him so I could get the picture.  (Not a trach.)

On a non-Manny note.  Zoe turned 5 yesterday and she wanted to get her ears pierced. So off we went to the mall to do it today.  She wanted to be like Mama and big sister so she was highly motivated.  She's been bugging me about 6 months about it and I told her when she turned 5. 

I think about the pain this little girl has already been through and a few little needles in her ears are nothin'!  She didn't even flinch! Not a tear. Not a whimper. Such a brave little girl.

I am so proud to be your Mama sweet Zoe!

Zoe is 5 ... a walk down memory lane

Zoe Zi Yvonne Gore.  Born Dang Gui Zi on approximately May 25, 2005 near Taiyuan, Shanxi China.  She was found about a week later ... in a place that it's a miracle they found her.

China Care (Specifically Hannah) found her at the orphanage and took her to live in their medical group home.  She received cleft lip surgery.

She got a foster mother.

Then she got a forever mama.  We missed that 2nd birthday by 3 weeks. At the time, we were very sad.  But it turns out, she got celebrated that day!  It was the last day her foster family had her.  And they truly love her.

Since then, she has grown into quite a beautiful little lady.  She also is very smart and very funny and very talented.  She also has some deep hurts and wounds that show themselves every now and then usually in the form of anger.  We pray God will heal her heart.

Here are some random videos of her so you can get to know her better:



age 1 before we got her http://www.youtube.com/watch?v=mksxAfswaao
age 2 making faces:  http://www.youtube.com/watch?v=QrEcj6R2vA4
age 2 blowing bubbles:  http://www.youtube.com/watch?v=PShVCZQYkOs
age 2 singing "Happy birfday to youp"  http://www.youtube.com/watch?v=ZKFg1E5iLEI

And finally, her story in song called "One Day" a song I wrote for her just before I met her.  http://www.youtube.com/watch?v=eJZEfCDTz1o

I am incredibly blessed to be her Mama.

Pain

Often, I am being asked, "Is the baby in any pain?"  I get asked that by concerned friends, but also by medical professionals.  And the quick version is ... not that I know of. 

Manny is a "Learn to be content in whatever state" kind of kid.  He rolls with the punches.  He endured a LOT of pain in the hospital and he was able to let it go easily. 

But the truth is ... I don't really know if he's in pain. 

And every now and then ... like last night ... he cries and I can't figure out what is the problem.  And that causes ME a lot of pain.  It breaks my heart to know he's suffering and I can't do a stinkin' thing about it.  I pray and sometimes I get a word of knowledge about something to do for him.  But other times, all I can do is ask God to take away the suffering. 

And in those moments, I contemplate the sufferings of Christ.  Not that I am partaking in the sufferings of Christ but I consider all the suffering He did.  We often think about the suffering of His death.  (Which is beyond thinkable.)  Or the sufferings He endured while on Earth.  But I also know He suffered a lot prior to His human existance and He continues to suffer with us.  Don't know if you've ever considered that. 

In these moments, I also think about Pain in general.  Humans are designed to avoid pain and head towards pleasure.  We're wired that way.  And most of us will do almost anything to avoid pain.  It's why people go to numbing agents like drugs or alcohol or pornography.  It's why people bury themselves in hours of TV.  We're trying to avoid pain. 

But we are supposed to look around and see the suffering around us.  We are supposed to DO something about it. Matthew 25 says we're to go ease the suffering of others and if we don't ... It's like He never even knew us.  I believe we can't truly call ourselves Christian and not notice and help remedy the pain in other people's lives.  If we don't, then we aren't Christ like. 

The other day (not bragging here, just making a point).  I was in Walmart.  We were out of everything and I'd just gotten home from the hospital.  It was crazy busy there and I noticed a woman in a wheelchair.  People were in their own little worlds busily going ... and were cutting her off.  I walked over to her and asked if she needed some help getting somewhere and she burst into tears about how she had just had back surgery, people weren't noticing her and the tears just flowed.  I left my cart and cleared the aisle from the back of the store to the front.  I put my hand (lightly) on her back and prayed God healed her.  I pronounced blessings on her and sent her away with the message that someone noticed her. 

The whole thing took 5 minutes and as I went back to my shopping, I started to weep and thanked God that he had changed my heart somewhere along the way.  I was never a super selfish person nor a cold hearted one ... but now He has given me the heart to notice suffering.  I notice pain. 

And so I come full circle in the discussion.  The point isn't to AVOID pain. The point is to go TO the pain of others and be a blessing, to help relieve some of the suffering. 

What about YOU?  Start noticing suffering and pain around you.  Let it change your heart.  Find out what God wants you to do about it.  And do it. 

Let Life Resume

When we were in the hospital ... life came to a complete halt.  For a week, I was indoctrinated with death, dying, demise and disease.  I was told how the illness takes it's normal course, what kids with Leukodystrophy die of and what the warning signs are.  We discussed end of life matters, hospice and home health nurses.  We devised a plan of how to proceed. 

During this whole thing, I was wresting with how to incorporate faith in all this. Afterall, I have a BIG God.  A God who is a God of life, not death.  He wants people healed.  He loves Manny more than I do.  He doesn't want him to suffer.  And I was wondering how to do the balancing act.  I felt I was on a tightrope. 

During one of my times of praying about this, God sent Dianne into my room.  I told her this very struggle and she offered some advice.  She said to make the plans.  Have them all ready.  And then get on with life.  I felt  peace come over me.  I said, "I can do that!" 

So like I said before, when I drove away from the hospital, I had the plan in place.  And I drove towards life. 

Life had been on pause. 

Now I find myself hoping again.  I feel myself talking about "When he grows up" and "After he can walk" and "When he can eat".  We're making plans of life.  We're making plans of the future. 

I know that the friends in my life might be wondering what to say to us or how to talk or topics to avoid.  But for now, we're good.  We've got our lives back and we're celebrating each and every day.  We were on pause for a while but now we're back to fast forward ahead. 

If you find YOUR life is on pause, I suggest to you ... live life to the fullest.  Make each and every day count.  Celebrate every day.   Love much and laugh often. 

LIVE.