Going back in Time: Pre-Glenn thoughts

I am pasting some earlier posts I wrote for my myspace blog, in keeping with the journey. They are from those volatile prenatal diagnosis and Norwood days. I am re-posting them here because they are a play-by-play account from that time--the hindsight and retrospection continues to evolve. We have come such a long way since then! Looking back on it, those days were filled with a combination of worry and hope, but I do remember them now as a time of joy and togetherness...and of Herculean effort!

November 10, 2008
Wow, well: here we are! Getting close to the next surgery. Things are going really well with Kieran, considering. The boy is a big otter...seriously, he shocked everyone by growing so quickly. He's the size some HLHS babies are at 6 months. I think this time, rather than blog about Kieran himself, I'm going to focus on some of my own recent thoughts.

This past month, I've had a lot of time to think about overcoming my intense fears and phobias about the medical establishment. But in doing so, I've had to confront a lot of spiritual questions as well. Kieran's OT was telling me about her own daughter's heart defect, and I confessed how phobic I am of hospitals and drs. I don't have a phobia of "sick people," like some who hate hospitals do. No, I have a living, breathing fear of medical procedures and practices themselves. To have to survive in that environment day after day, and to watch what Kieran has to go through, has at times almost destroyed me. Kieran's OT responded with, "I think at times in our lives, we are lucky enough to be given opportunities to overcome our fears."

I thought about this, and1) I was perfectly content being afraid of and avoiding the medical establishment.2) Trying to overcome my fear of the above through this situation is like taking someone who's afraid of water, dropping them in the middle of the ocean, and saying, "cheerio! see you when you swin back to shore!"3) In my life, I've always taken difficult experiences and thought, "it's not so bad. This is preparing me for something that is bound to happen in the future, so that it'll be easier to deal with." But this model is now causing me anxiety: what worse situation might I have to deal with in the future, that this situation is helping prepare me for?? Thus, I am not going to think this way anymore.

Spending 32 days living in a corner of a hospital room...I don't even know how to describe it. There was light, there was hope, there was joy...but there was also lonliness, anxiety, worry, the feeling of being so cut off from the rest of the world. One of the most difficult things for all of us to deal with has been the separation. Only 1 parent is allowed to stay overnight in the hospital room, for example, and only 1 parent is allowed in the surgical recovery room. Staying at the hospital makes me want to climb the walls, and all I can think of is escape. But when I do escape, I feel guilty at leaving Kieran, and I go home and cry anyway because Shawn and Kieran are not there. Shawn can handle the hospital environment much better. He has worked in hospitals. He majored in medical social work. He doesn't mind as much. I don't know how he doesn't mind as much. All I know, though, is that when I look to him for strength at the end of the day, he's not there, because only 1 of us can stay with Kieran. Likewise, Kieran is separated from us by medical procedures, by his own journey that we cannot follow him on. The drs wage their wars on disease, sending in reinforcements like drugs and red blood cells, and Shawn and I are left in its wake, tending to the wounded emotions and war traumas. Like how Kieran screamed in terror for 3 hours straight after getting his blood drawn on Sat.

So, all this brings me to a lot of soul-searching on human suffering. Like I've said before, nothing tests one's faith like seeing the suffering of children. What is the 1 reason people give for not believing in God? I don't know for sure, but I would bet it's "if there is a God, why do innocent people suffer?" And who is more innocent than children? There are a few reasons people give for the suffering of children...fallen world, original sin, spiritual warfare, etc. But I think it's all fine and good for us as adults to philosophize about it while babies and children don't understand such complex arguments.

So, what, then, is the point of letting those suffer who cannot understand, who don't have the reasoning capabilities of an adult? If God is trying to make some grand, poignant point, isn't it lost on a 3-month old baby who suffers in war, famine, or disease? We can say, well, this suffering is going to shape who this 3-month old will become--but children die too--so what if this 3-month old doesn't live? One dr told me that we cannot look at the length of one's time on earth to measure the value of their life. That it's not how much time you have, but what you do with that time. I believe that. But what about when that time is filled with suffering one cannot understand or put into perspective? How can you tell a starving child, "God is allowing this to happen to you because we live in a fallen world."

One pastor said in a sermon a couple years ago, "we are all like the children who cannot understand. We are all the children who scream when we get vaccines...the parent knows it is for the good of the child, but the child does not." I believe that. But then again, God has the power to take away our pain whereas earthly parents often don't. God often chooses not to take away our pain--yet, as parents, we would take away our child's pain IF we COULD.

This brought me to wondering about God as a loving Father. Sometimes it feels like living in this world is like your dad plopping you down in the middle of a busy intersection when you're 3 years old, and leaving you there to find your way home. If our dads actually did that, they may very well be taken to court for child abuse or neglect! Would a loving father let his child starve or be victimized if he had the power to stop it?

All these reasons, all these justifications for suffering have pretty much proven to be lacking. But, there is this little thing called faith. We can look to the Bible (or our respective holy books) and we can know Scripture inside out, but it does not mean we have faith. If we expect to have every answer to every question, where is faith? Julian of Norwich (1342-1413) asked on her deathbed, "I felt troubled about all the grief evil men cause the human race because of their wickedness. If God knew beforehand how innocents would suffer...?" Her answer came, "The Lord is not angry at those who press about such questions--'Why do the innocent suffer? Why does God continue to allow sin?' More, He feels pity and compassion on us when we destroy our own peace of mind--for the answer is so great, and our minds are not ready to receive it. The Lord wants us to leave our souls in peace, and to please Him, by leaving these profound questions alone for now."

And I have come to believe this. I have only come to believe this today. When I think about the Bible, God does not promise us immediate relief from suffering. But He does promise a refuge, a resting place, and...peace of mind. He promises that He will take on our pain with us, and that He will walk with us when no one else will, though we cannot always see Him. These things we can have, if nothing else. And I am going to work on accepting this, and this place, for the rest of my life.