Wednesday, October 26, 2011

In a World of Crazy

Let's just say I feel a little crazy these days. It's kinda like walking through quicksand, while watching a ping pong game, while having an out-of-body experience.

I guess I should explain that, huh?

Thursday will be the three week mark of getting Caroline's diagnosis. Three. Weeks. That's it. It feels like I've lived an entire lifetime in these three weeks. Walking through quicksand. I take one step at a time, because it's all I can do. And it seems like it's taking forever. Time has become this weird, surreal entity. I still live within the limits of time, but time doesn't seem the same anymore. I feel like time is suspended at the same time it keeps trudging forward. It's just...odd. I can't really explain it.

Then there's the constant back and forth. Ping pong game. Joy, pain, faith, doubt, grace, fear. In a single day I probably have more emotions than I would typically have in a month. It's exhausting. I've mentioned before the constant tension I feel between Caroline's two possibilities, as I call them. Healing miracle or nature's course. To go along with that are emotions. If I focus too much on the miracle, I begin to wonder if I'm setting myself up for disappointment if that's not what God has planned for us. Then I feel bad because I wonder if I'm lacking faith. And around and around it goes. Then, if I focus too much on the medical "certainty," I'm wondering if I have enough faith, then I feel like I'm justified because I have to guard my heart against the possible disappointment. You see what I mean? Ping. Pong. Back and forth, round and round, constant tension. I can't give up either option for now, because we don't know what God is going to do. But it's a constant battle.

As I'm going through this, I know God is carrying me. There is no way I could be doing this on my own. His love sustains me, and his grace covers me. I seriously sometimes feel like I'm watching myself experience this, not going through it myself. Out-of-body experience. I still FEEL everything, but as I "watch" myself handle this situation, I wonder who this person is. This person suffering with patience and grace, hoping in a miracle most people would say is can't be me. It's not like me. Oh's not me. It's God with me, carrying me through. If nothing else comes from this experience, I KNOW that my faith has been strengthened. God has "proven" himself to be faithful to me beyond a shadow of a doubt, and my faith and trust in him has so much more substance. It's been tested and tried, and refined in the fire. That doesn't mean I'm perfect, or handling things perfectly. Far from it. But in the moments I choose to rely on my Father, things go well.

There are other things going on too. I want to be able to trust the medical professionals around me. And as far as I know, all the ones I've dealt with thus far have been trustworthy. But...I know the Great Physician. And what He says goes, even if it's contrary to common medical proof. But here's the thing...I sometimes wonder how much the medical profession really knows about this disorder. Cameron has been an information hound through this whole process. I've already shared that anencephaly occurs in about 1 in 1000 pregnancies. I recently found out, through Cameron's research, that 90-98% of those pregnancies are terminated. So that means roughly 1 in 10,000 pregnancies involving anencephaly are continued. 1 in TEN THOUSAND. Of the continued pregnancies, about half are lost through miscarriage or pre-term labor. That means only about 1 in 20,000 are carried near or to full term. That's...really not very many. And from the personal anecdotes we've found online, it seems the severity of each case differs, sometimes dramatically. I'm not saying any medical professional is intentionally muddying the waters. But if any disorder is as rare as anencephaly, how much can you really know? It just makes me wonder, that's all. It makes me wonder how long my baby Caroline could survive even if she isn't healed miraculously. We've been told hours or a few days, but we really don't know. At all. It's what makes my hope and faith all the more important to me.

Then there's the physical paranoia. This is probably the most obnoxious thing to me right now. I'm a first time mom as it is, so I don't know what's "normal" for me during pregnancy. Add in that I am now considered high risk, with a chance of pre-term labor, and everything I'm unsure about is magnified. Every twitch, pain, pull, ache, or twinge is analyzed and fretted over, wondering if everything is ok. I hate that I do this, but I can't help it. When I start to freak myself out, I just have to remember that God knows the timing for little Caroline, and he'll be there for me no matter what. It's not easy, but when I pray that God would help me, he does. It doesn't mean I completely stop worrying all the time, but the worry doesn't consume or overwhelm me like it otherwise would.

The last thing I want to discuss is how other people are thinking about our situation. I have a lot of friends and family that are incredibly supportive. They encourage me, lift me up in prayer, and remind me that miracles can happen. And they truly believe it. It's not a nice platitude to try to make me feel better. They really, truly believe it. They also realize, like we do, that it might not happen, but it doesn't change their faith that it COULD.

Then there are others, who although good intentioned, I sometimes feel like are "humoring me." They kinda seem like they think I'm a little crazy for ACTUALLY believing Caroline could be miraculously healed. It doesn't really bother me when people come across this way. It hurts a little, mostly because I want them to experience the depth of love and and grace I feel from my Heavenly Father, the KNOWING that God is powerful and ruler over everything. These people are still supportive and kind, I just wonder if they think I'm a bit off in the head sometimes.

Cameron has had some strangers straight up tell him that he's brainwashed, crazy, and delusional for believing we could get the miracle we're praying for. They don't believe as we do, and I understand why they feel that way, even though I don't agree with them. To people who don't believe in our God like we do, for people who believe that the medical inevitability is, in fact, inevitable, we are crazy. I'm ok with that. 1 Corinthians 1 basically says that will happen. Verses 18-31 talk about this, but I think verse 25 sums it up pretty well: "For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength." In the end, it doesn't matter what other people think about us. It matters what God thinks of us. I hope he can look down on us and say we're doing a good job, honoring him with our words and actions, showing true faith in a difficult earthly situation.

Because here's the thing...this isn't the end. Life on earth is like a vapor, as Scripture says. We're here a short time, then comes eternity. As long as we can grasp that, as hard as it is, then things like this get a little easier. Knowing God's in charge, knowing he has our best interest at heart, knowing when we get to Heaven this will seem inconsequential compared to the glory we share with makes all of this fall into God's perspective.

So if you think I'm crazy for handling this the way I am, for hoping like I do, for defending my faith as I am, then ok. I may feel a little crazy right now, but I know I'm not. I want to be wise in God's eyes. The eyes on earth are limited and the wisdom of human beings is foolishness. When I start to lean on my own understanding, or on the world's expectations in this situation, hope is lost and faith is weakened. When I rely on the truth of God, and seek to be wise as he is wise, hope flourishes and faith grows. I want the second version.

I'm ok feeling a little crazy. It makes it easier to rely on God, easier to hope in the future. And easier to see God's glory.


  1. very well said Emily!!! We love you and we truly are believing and praying for a miracle!!! ~Alissa

  2. I don't think you're crazy. And I realize that this isn't an episode of America's Got Talent but seriously, you do. Your writing is so beautiful: you comfortably slip me into your shoes as I read and I find myself plagued with the same issues that you are wrestling with. I am a mother, but so are you Emily. You are protecting and loving and praying for your child the same way that I do. My mommy heart aches for you, but at the same time, I celebrate you for your courage and your grace. You are such an inspiration and reading your updates increases my faith in God. I'm sure I'm not alone. Talk about having an impact: God may call Miss Caroline Grace home shortly after she is born, but that little precious life has already made an impact. Thank you for sharing your story. You keep following your heart. I've got your back.

  3. Thanks Alissa! We know you are. :)

    Anon, thank you. Your words are so kind. I appreciate your encouragement, and I hope I am worthy of your praise. I'm glad you can enjoy reading our story from a literary standpoint, too. It's easier to get a message across when it makes sense in writing. Haha. So thanks again.

  4. Emily,
    The way you and Cameron are handling everything is simply awe inspiring. I do not think I could be so positive, or strong in my faith in the same situation. You are both simply amazing! Reading your blogs are like reading a love story to Caroline. It is clear how deep your love for God, each other, and Caroline is. In a world of crazy, you are an example of the kind of person we should all strive to be!
    Hugs & Prayers from VB, Laurie

  5. Thanks Laurie! It's amazing what you become capable of when you're placed in an extraordinary situation...God's presence is palpable, and his grace gives you strength. We appreciate the hugs and prayers. :)

  6. Love you. The will of God will never take you where the grace of God will not protect you.

  7. I am awed by the way I see the influence of our awesome grandparents, who instilled their faith in our parents, who passed that faith to our generation. And now, lucky kiddos, a fourth generation will have parents with strong, Godly intentions, to pass that faith on down. All the Hayes kiddos in His plan will hit the ground with a huge head start. Keep it up, Mama! Luv u, Dawn

  8. Linda and Dawn,
    Thanks for the messages. We appreciate your love and support!


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