Diagnoses

The other day, I once again, felt that kick in the gut.

In the military, there is a program called the exceptional family member program, or the EFMP. The purpose of the program is to make sure that the base you are stationed at has sufficient medical facilities, or educational programs, for every member of your family.

So, for example, Zachy and Natalie are enrolled in the program. When we go to move, a red flag will go up in Matt's file saying we have special needs. The base we go to will have to be able to accommodate their needs, or we can't go to that base.

Since we are getting ready to move (PCS, permanently change stations), we have to update all their EFMP paperwork.

The paperwork requires letters from their doctor, stating what exactly, they need. Since we are PCSing, the doctor also gave us a copy of their records.

Since I always feel the need to read every report I'm ever given, I decided to read this one too.

I read through Zachy's. His diagnoses were, TAPVR, Sick Sinus Syndrome, and pacemaker present. Yep, all pretty straight forward.

I then went to Natalie's. Her diagnoses read TAPVR, and Pulmonary Vein Stenosis.
It also goes on to state that there is a chance, although slight, that she will need another surgery to correct the stenosis.

So here's where I felt the kick in the gut....we have always said, in passing, that one of her veins might be slightly narrow, but I never thought it was something that would be a diagnosis. I never really thought she would need another surgery. And, she probably won't. But the fact that it was written in her records, it just makes it that much more real.

I'm sure her nurse from the NICU, Jeremy, would be telling me she is doing everything that is expected. He was always good at telling me that. Still, even if it is to be expected, I just never expected to see it in print.

Stenosis is not something we ever dealt with with Zachy. And we know it is the main complication of TAPVR after repair. It's just not supposed to happen to us. She is supposed to have one diagnosis..not two diagnoses.

I know everything will be just fine, it was just another one of those times that took my breath right out of me.

Oh dear!

My blog background is gone!
And what's worse..I can't figure out how to delete the stupid little box that talks about photobucket.
I just plunk my codes into the HTML box, and I usually find it to delete it, then redo it. Only, now I can't find it! I've gone through everything.
This stinks. I've been thinking of changing things up..the url, title, design...maybe now is the time to do that. After all, I no longer have 5 monkeys.
*sigh* I'm so sorry it's so ugly to look at right now.
I'll keep working on things.

Things I Just Don't Understand

There are things in this life that I just don't understand. Ranging from simple things to more complex things.
And sometimes, I think I may be a little crazy. But that's OK, we're all a little crazy. Right? Somebody please tell me I'm right!



For instance...
Why does Rockin Green Laundry soap work so well? I can fill my washer up with the soap and water and it's crystal clear. I add my clothes, and I can no longer see through the water. How are our clothes so dirty? I've washed clean diapers in it, same thing. How long does it take for all the built up laundry soap to be removed? Will our clothes always cause the water to be filthy? I just don't understand.
And on the topic of laundry...I don't understand how Collin can insist on wearing the same clothes day in and day out, and yet when I wash his clothes, he has a bigger pile of clothes to be put away than anyone.

How come when Matt leaves, and tells the kids they can't come with him, it suddenly becomes my fault? Today, Matt has been cleaning out the van. He took out all the seats so he could vacuum it. When he left to vacuum it, of course no one could go with him. Emily cried her eyes out. And it was me she was mad at. As if I was the one who took all the seats out and wouldn't let her go.
I just don't understand.

I just don't understand how it can be, that doctors can go through years of medical school, learn a fraction of the workings of the human body, and still not believe in God. How can you learn all the intricate details of cells and think it all happened by chance? I do understand that they see people die, and it could cause them to wonder how a loving God could allow an innocent person to die. I get that. I don't get how they can't recognize all the miracles that happen around them, daily.

And finally, how can I be going about my day, cleaning out a cupboard, and have my world flipped upside down again? Every once in awhile, this happens. Today, I was cleaning a cupboard. It happens to be the cupboard that holds some meds. I came across a bunch of tiny medicine droppers. Droppers that were given to us when we took Natalie home from the hospital. Droppers for Lasix. And my heart dropped. All the feelings came rushing back, and for a moment, it was as if someone had sucked the breath out of me.
How can this still happen??? Why does this still affect me this way? Why is it so much harder this time than when it was Zachy? Or is it? Maybe it was like this with him, and I just got over it. I know I'll get over it this time too. I know I am so blessed. My baby is here. Alive. THRIVING. And yet, these things still hit me like a kick in the gut. Why?
I just don't understand.

I really need to stop ranting!

I know I've been a bit ranty lately, but please, allow me to rant one more time.
If you are a member of facebook, you have undoubtedly heard of the Chase Community Giving. If not, here's a rundown. Every person on FB has 20 votes they can use to vote for their favorite charities. Now, you can't use all 20 one one charity, you have to spread them out.
The top two hundred charities split a huge amount of money. I can't remember exactly how much it is, but it is enough per charity to make a difference.
So, the voting ended, and you could check out the winners.
What I saw really made me so mad.
Charity after charity related to animals. ANIMALS!!
Now, don't get me wrong, I like animals as much as the next person, but COME ON!!
You know what I didn't see?
I didn't see Saving Little Hearts, or any other CHD charity. I'm sure if any others signed up, but I know that SLH came in like 234 or something.
People...CHDs are REAL. They aren't something that is minor. They are major.
There were pediatric charities that won, which is wonderful. But CHDs will kill more children in one year than all childhood cancers combined.
Does anyone know that? Nope.
Why?
The awareness isn't out there. I cannot understand that. I'm sure it's hard for me because CHD is everywhere I look. I have many CHD friends, and it almost seems like the norm.
But here's a problem. Everyone knows about childhood cancer, it's visible. Everyone has seen the heart wrenching pictures of the child with no hair. Everyone has seen the St. Jude commercials. It's out there.
No one knows about CHD because, unless you see the children with their shirts off, you don't see it. There are no heart wrenching stories on TV. We have celebrities that do nothing, Shaun White, Brett Michaels, a Backstreet Boy, and I'm sure the list goes on. Why aren't they saying anything? They have the perfect platform to spread awareness. It makes me so upset to think about it. Because I'm just a person, I don't have the platform, but they are out there.
Then there was Boston Med. Those of us in the heart community were so excited. Finally, reality was going to be shown. And then. It wasn't. It was totally sugar coated. The baby was born with HLHS, which is serious. Many babies die from HLHS. But in the show, they just showed the baby going home like all would be fine.
And that's how many people think of CHD. That it gets fixed and everything is fine.
Only it's not.
These kids have to live with this for the rest of their lives. It is never fixed.
Yes, they can lead normal lives, sometime, but it will never be normal like a heart healthy child.
And the parents are never fine either. There is always worry in the back of our minds. When anything goes somewhat askew, we wonder. We wonder 'what if something is happening?' It never, EVER goes away.
And yet, we vote for animals. Animals.
And so, to show you the heart wrenching, I'm sharing what CHD is. The heart wrenching part of it.
It is this.

Natalie


Zachary

And it is funerals for babies or children who passed away far too young.
It isn't pretty. But it is very real.
There is hope, though. Back when Zachy was born, we were hard pressed to find anything regarding TAPVR on the Internet. Not so much, anymore. And through networking sites like Facebook, we are able to connect with so many more people, and spread the word.
CHD is real.

Zachy is so smart!

I took down my VBS montage because I wanted the music back on my blog. Also, something happened and the one that showed up here wasn't the finished product. Only, now we can't find the finished product.

Anyhow, as I was saying, Zachy is so smart.

The boys are all hungry and complaining that there is nothing to eat.
Zachy says, "you could have an apple"
Then, "you could have carrots"
"ORRR you could eat everything in the fridge!!"

He is so silly, but really if we would all think like he does, we would all be nice and skinny. Apples and carrots indeed!

I cannot comprehend this

I know I said I was going to be MIA, but something happened today, and I just had to blog about it!
Today was the day we had waited for...Emily got her cast off. Hip Hip Hooray! We came home and she promptly took a bubble bath and laid all the way down in the tub!
But that's not what I want to blog about.
When we arrived at the doctor's office we sat down in the waiting room. Where Headline News was playing.
The story that was playing was about how having kids makes parents miserable.
Let me give you a minute to pick your jaw up off the ground.
.
.
.
.
It's true. They say that studies have shown that parents aren't happy. Wanna know some of the reasons why?
One I heard was that the kids had so many activities that parents don't have time for themselves.
Also, that kids cost so much there isn't enough money left over for the parents' wants.
Do you see the common thread??
.
.
SELFISHNESS.

I'm sorry. I don't get it. Why in the world would you even have kids if you want to carry on with your own life just the way it is??!! Why would you think that they aren't going to take time???

What is this world coming to? I'm just flabbergasted by this. And what's worse, when I went to try to find the story to link here, I googled things like, "more kids less happy parents" and "parents not happy" and I got article after article after article, you understand, about parents not being happy..BECAUSE THEY HAVE KIDS.

I have to imagine that these people being interviewed are not Christians. Although, I know some are. In the churches, no one thinks twice about things like birth control. No one thinks about the fact that the Bible consistently calls women with open wombs "blessed". Or about the fact that we are called to raise children for God. Now, don't get me wrong, I absolutely understand that there are infertile people out there, who are living Godly lives. I don't think they are not blessed. I truly believe they are called to adopt. It takes very special people to adopt, and I believe God calls them.

Selfish. That's what these people are. And I just don't understand. We have become so wrapped up in our own wants and needs that we don't ever look to others needs. How often do we do something for someone else, if it means sacrificing something we want to do? I'll tell you...not often. And I'm not just talking about you, or your neighbor, I am talking about me too. We are all guilty of this little demon called selfishness.

Oh boy, this entry has taken a turn. I didn't mean for it to be a rant. And honestly, I'm trying to add to my readers, not lose them. I'm sure I probably lost a lot with this one entry!

I just really cannot understand how people with kids can not be happy. Who else loves you unconditionally? Who else smiles at you, even when you are not always so happy with them? Who laughs at your jokes? Who gives you a hug, just because? Who? Your children, that's who. How can that not make you happy?

Please, accept my apologies if this post offended you, that wasn't my intent.

Psalm 127:2-4 (King James Version)

2It is vain for you to rise up early, to sit up late, to eat the bread of sorrows: for so he giveth his beloved sleep.

3Lo, children are an heritage of the LORD: and the fruit of the womb is his reward.

4As arrows are in the hand of a mighty man; so are children of the youth.

Lyrics, Before I go MIA

Before I leave for a bit, I wanted to share the lyrics of a song that has been speaking to me.
I've kind of been having a hard time lately, and it's nothing that anyone would understand. Well, unless you happen to be a CHD parent, then you probably would.
I went looking for the video yesterday, to post on my facebook page. Imagine my surprise to find a video about the inspiration for the song. It was inspired by the artist's friend, who has a CHD baby. And this song gets it. I can't explain what it is, but it's what the song gets.
Now that I've made zero sense at all, here are the lyrics. I added it to my playlist as well, so it could be playing as you read this.

Before the Morning, Josh Wilson


Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

Christian lyrics - BEFORE THE MORNING LYRICS - JOSH WILSON

It's VBS time!

Yep, it's that time of year again! VBS time!
I love VBS. There is nothing better than watching kids learn about Jesus. LOVE IT!!
We are the directors again this year, so I am pretty busy.
Which is why I'm going to be disappearing for the rest of the week.
Not that I'm always so good about updating, but I'm trying to get better.
In fact, I have two separate contest/giveaway ideas in my head. The thing stopping me is what to give away.
You could help me with that. Let me know what would be a good prize and cause you to participate in a contest!
I'll be getting on the first one next week. So let me know what you want to win!