Global Cerebral Atrophy.

"And if he has no arms or legs we'll hang him on the wall and call him Art."

For a second it was morbid, then it was eye opening, then a little morbid still. But it was true.

Months ago, we thought it had become reality.

"We don't know entirely what this means. He might never walk, talk, communicate. He might be closer to normal function than that." Tears poured down my face uncontrollably. I had resolved not to cry, but as a mother- there's no way you can't cry when your worst fears (second to worst fears) become reality.

"You have the worst job ever." I said to her through a teary, shaky voice. Her face was kind, compassionate, she almost seemed like an old friend. It wasn't a hateful statement, it was me feeling empathy for her while watching me listen to this news.

I looked at my son and I kissed his very sick little head.

Had I lost the boy that had come in here?

I don't think we did, now. But then, I didn't know. I didn't know at all if he was going to know me, if he was going to be completely unable to communicate, to smile even.

Would I ever see his smile again?

Nick and I felt like the world had collapsed. To fight for four months to get this 'news'. Did it change how much we loved our son?

No.

It only changed our circumstances, it would never change how much we loved him or how hard we would work to take care of him. If he survived this, if he got better... We planned.

We planned for a wheelchair. We talked about 24 hour care for him, homecare, suctioning. We talked about one thing that meant the most to us, that we would love him and take care of him the best out of any parent that ever had to deal with that.

Like we always had done, we would love him the best we could, even if he couldn't say he felt it.

And the phrase came into my head that Nick's Dad had said months and months ago.

"If he had no legs or arms, we would hang him on the wall and call him art."

And suddenly the phrase that followed came into my head.

"And we would love him all the more."

The only thing I am truly proud of as a Mom.

It is absolutely impossible to say if I would choose the same things for Gabe now as we did then. Would we want to put another little one through all that? Certainly not the last 5 months of his life... But let me say at least this.

I am proud.

I am proud of my husbands choices and my own choices in our last pregnancy. We didn't know anything about what we were thrown into in those moments.

I'd never had to consider risking my child's life to test for chromosomal abnormalities. I'd never even had to think about chromosomal abnormalities. I'd never heard of babies dying right after birth, wouldn't they die before they were born if it was that bad? No. They don't always.

But 2 years ago, Nick and I had to face choices that we never knew we would have to face. As parents, it was terrifying. We knew one thing.

Our child's life was precious, no matter what they had. We would fight for the moments we had with them, and we would make the best choices we could without bias. Including high risk clinic biases (which trust me, are pretty hard to get away from).

There is nothing more heartbreaking than finding out your baby is ill before they are even born. Being faced with the choices they give you in those moments is like being taken from a small town in Idaho and thrown into downtown New York City and being told to choose between working your way up the corporate ladder starting out as a secretary or packing your bags and going home.

There is nothing glamorous about having a child be born with a severe and complex issue of any kind. It's not fun.

You focus all your energy on those moments where you can love them the best you can and the best God can help you to.

Their whole life is choices. From the second they are born you have to decide between option 1 or 2 and option 2 is letting them die and option one is putting them through the thick of it in the hopes that they want to fight and they want to live.

No one can tell you what is right or what is wrong. Not even I can.

But I can tell you this much.

Love them for as long as you can.

Let nature take it's course. (What I mean by this, is that if they will live, they will live, and if they will die, they will die. Fast forwarding it and putting the end of their life in your hands will only leave you with questions that you can never answer for the rest of your life.)

Meet them, greet them, and choose what you and your spouse and your God think is best for them. Do not choose because someone told you what is right or wrong. Search your heart.

This is YOUR child. They would grow up listening to you and you would help form their opinions and beliefs. What would they want for their lives?

Crying is not a weakness, and saying goodbye will hurt. It will more than hurt. It will leave a void where they were born into your heart.

Let them be born into your heart, and the rest of the choices will follow that.

Whether they are here yet, or they are still growing... They were born the second you knew you were expecting and you began imagining their spot in your world.

Those of us with good imaginations are a little better at this, I've found. But imagine the perfect moment.

If they are so ill that they may not survive one surgery, what would you rather have with them?

One peaceful moment with no tubes, no wires, no surgeries and just love?

Or a surgery that might leave you without that moment?

That, my friends, is the most difficult first decision I have ever made as a parent.

But I am still proud. I'm proud I chose love and life and hope. :)

And I'm proud of my son, most of all, that he chose us. He put his hope in us.

The leftover fears and ocean of memories.

I knew, 16 months ago, that soon my son would be born and I would probably not have much time with him. I didn't know if he would live or die.

Then he was born, in three pushes, at 2:20 in the morning. I saw him and he was mine! He was so sweet, so small, so uniquely my son! But immediately, he had to be taken away and I couldn't see him until they had looked him over and done tests and scans and put an IV in his belly button.

The emotions of having a newborn baby are so intense, the love so intense. I was exhausted, but I couldn't sleep. I was waiting to see him, to see him one more time.

Soon, I saw him again, and even sooner, he was taken to another hospital and Nick went with him and I was left alone.

I was in my room, alone, with facebook and a blog and introducing the boy to this internet world... my pride and joy! But I could hear all the other babies with their families. Babies crying and being taken in and out to nurse and cuddle.. Something I hadn't really gotten to experience with either of my kiddos.

The pain of those moments fed by the fears of what might not happen after them... I was lucky to get out of that hospital quickly and over to see my little boy for a moment before he was intubated.

They don't disappear, those feelings of fear and helplessness and intense emotions, and they breed more fears and more feelings of being out of control. I have no control over what happens this time! I am going to do this again, have a baby, and I don't know what will happen! I've never had 'normal' yet, will this be it?

Will I get to have the baby and then hold them and not give them back? Will I get to nurse them and bond with them and stare at them, those moments I have longed for so desperately? Those first moments, that I will never, for one second take for granted.

There is so much beauty in this journey we are on again, but so many fears are hard to push aside. So I have to keep reminding myself beyond my own self doubts...

"You are capable of handling anything that happens... But I think that God knows the desires of your heart more than you can imagine... and I think he is whispering a gentle and life changing experience... the one you haven't gotten."

I know God loves me!

I know he loves my daughter!

(How strange to say such a thing!)

So I am trusting in him to give me these desires of my heart and to protect me from these fears!

Hello, I'm a Christian.

Your disbelief or hatred for my beliefs doesn't effect my beliefs. It doesn't upset me if you don't believe as I do, because I don't need you to. It's not a requirement of my faith that I force you to believe what I believe. It's a requirement of my faith that I love you despite our differences. I believe, I have faith in Jesus, in God. If that bothers  you, if you feel the need to tell me what my beliefs entail, you feel free. But don't do it without understanding the entire context of the beliefs you are quoting. Instead of going in looking for a fight for what I believe, why don't you just ask what I believe?

I believe that your life has as much value as mine, no matter how you choose to live it. I believe that you are loved deeply by a God that I feel and know in my heart. I believe that you were forgiven the same as I was for all the sins that you may or may not have committed. I believe our sins are equally painful for the one who died for them, no matter what 'degree' you think they hold.

I don't believe that I can look at you with hatred or disgust if I am looking at you through the eyes of my God. I don't think I can look at you without a love that even I myself may not understand if I am seeing you through the heart of God. That's called Agapi love. It is hard to describe to those who haven't felt it. Irrational love for people who you would otherwise not glance twice at, for people that would otherwise make you uncomfortable.

When you love someone irrationally, it's a God kind of love. You love them despite their beliefs and despite their differences, because you know they were created by someone who adores them.

Hatred has no place in the Agapi love of God.

This is my belief, because I believe what God says. He says you are beautiful and worthwhile, you are imperfectly perfect and I am no closer to perfection than any other person.

Do I live up to my own beliefs? No. I find myself looking at someone with irritation, annoyance, disgust, even, from time to time. It humbles me to know that God is not proud of me in those moments.

What my beliefs mean:

POLITICAL PARTY

Politically, I do not fit with either party, not democratic and not republican. This is really hard for voting purposes. I do not believe in forcing my beliefs on others, but I also do not believe in inhibiting others rights to fight for their beliefs, no matter if I agree with them or I do not.

ABORTIONS

I do not believe in abortion, but I do not believe in outlawing it for the reasons that I have developed from personal stories and experiences. These reasons include the fact that someone in our family is suspected to have hurt themselves in order to end an unwanted pregnancy and in the process could have killed themselves over the issue. I cannot judge this. I also cannot judge someone who has chosen to terminate for medical reasons because they believe their baby is in pain in utero.

I, personally, would never have an abortion. I value life and I believe that my child should live as long as I am capable of supporting them and as long as they fight. I value a pregnant before I even know I am certainly pregnant. I dream of a life that has yet to be born, before I know it is even there.

I believe in counseling and fighting for life, and talking to people about the effects of abortion, the facts of abortion, the loss of life that abortion does certainly cause. I believe abortion is wrong, based on my feelings and experiences. But I also believe that killing yourself to end a pregnancy is horrifying.

Someone once told me that the babies aborted in utero are instantly in heaven, and knowing that gives me some sort of comfort, but does not change my feelings on the issue.

This does not mean that I do not hold a great amount of compassion for those who choose it. My heart bleeds for them, for their baby, that they would think ending a life would be the only way to keep living. Medical Abortions bring a lot more complex and complicated beliefs, and I could talk about it for a long time.. but I suppose you have gotten the jist of my personal beliefs on this matter.

GUNS AND GUN CONTROL

I, personally, do not like guns. My husband loves them, most of my family do not have issues with them. I feel sick and nauseous and dizzy when holding a gun. It's not one of those things that I want to do, which is pretty surprising to myself considering how much I like other things that give you a lot of power.

I do not believe that guns should be banned or taken away from families. I believe families should be able to protect themselves and their children, go shooting at shooting ranges, hunt. I believe it is a right in the constitution for many reasons, and I do not believe it is outdated.

I do believe that there is nothing wrong with having to register your guns or weapons, so long as the government does not try to use that information to infringe upon rights to protect yourself and own a weapon.

My Aunt was murdered by a psycho with a gun. But I am fully aware that it was because he was a psycho and not because the gun was evil. He shouldn't have owned a gun, given his history, and he was clearly mentally unstable, but the fact is that I believe he would have murdered her with or without a gun. He was psychotic. Anyone who is willing to murder people, who wants to murder people, will find a way. Especially if they are the level of psycho that they are planning it out.

The best way to prevent this from happening, in my opinion, is to provide counseling, places to check in if you are having feelings like harming yourself or others, and having many more resources for families with children who have mental disabilities. Right now, there is not nearly enough available to help these people with severe mental issues. Parents have to basically lock themselves away with their child and hope for the best.. and pray that their kid gets arrested before they snap and kill someone. Hospitals will not keep mentally ill patients for long, they medicate them heavily and send them back to their families.

The way to help the mentally ill not commit horrific crimes is to be there for them as a community. It will still happen, evil will always exist, but taking away guns from people who abide by the law will only leave us more defenseless and turn America into another Europe... and I'm sorry, psychos live in Europe too. (Or did you already forget subway bombings and anything else on the news that you didn't want to remember due to your agenda).

BEING PERFECT

Haha, this is sort of a joke. I kind of covered it already, but I want to point out how flawed some of us can begin seeing our own beliefs. In striving to be good and holy, some of us tend to forget we are incapable of it and then start feeling like everyone else should at least be trying too, and if they aren't we start getting all judgy and mean and forget our first rule. Love each other.

Yes, I believe in trying to kill each other with kindness and forgiveness and love and caring. I also believe in being human and completely screwing it up and apologizing and trying all over.. and then sometimes our egos get in the way and we end up screwing that up too.

Honestly, I believe in forgiveness and in love, and those two go hand in hand. Over and over and over and over again. Until you feel sick. Until you think "My gosh, how can anyone forgive me, or how can I forgive them again?" And then I also believe that we will screw that up.

I guess I believe in screwing up. :)

All in all, this post has been to clarify a little of what I believe as a God fearing, Jesus believing kind of a person.

But that doesn't mean I didn't screw it up! :)

Pray for Gabby... Urgent.

Gabby was born with the same heart defects as Gabe (an even rarer combination than HLHS, HLHS and an AV Canal Defect) and has been struggling for the past few months.

She came down with Pneumonia, ended up being intubated and then finally unintubated last month, and now she is doing even worse. Her cardiac and pulmonary function is deteriorating, her kidneys seem to be starting to have issues making urine... (from what I've gathered from her updates)...

Her family now feels like they are facing the inevitable end of their journey with little Gabby, and we know all too familiar that hopelessness.

God is the God of hopeless situations. I believe that, even though our hopeless situation did not improve, that doesn't make me question the power and abilities of prayer and petition.

Please, pray with us for Gabby. Petition with us on her behalf.

https://www.facebook.com/TeamGabbyHlhs?fref=ts