May 2, 2012

MAY 2, 2012

I realize that it’s been quite a few days since our appointment on the 26th. I‘ve had a difficult time processing and putting into words what we are feeling, and even if I had, there is a chance that what I would have said would have ended up in some sort of heresy hall of fame. I hope that is no longer the case.

I feel like I need to say this as well. My last correspondence was filled with a lot of hope and peace, but I think it was based on some preconceived notion of a certain miracle. I didn’t think about it at the time, but we had spent the last two or three weeks conjuring up images of ourselves, 3 years from now, caring for a severely disabled little girl. I think being away from medical professionals for a few weeks afforded us the opportunity to dream things that weren’t reality. Honestly, I believed very deeply that this was going to be the appointment where we found out that she was completely healthy. I don’t know where that hope came from, but it made our day of appointments that much more difficult.

In my head, I had assumed that Pearl’s life was going to be one of those scenarios where God uses the foolish and weak of the world to shame the wise, but that was not the case. There was much more to see at this ultrasound than we could see at our last one, and even the staff agreed that they felt more room to hope after our initial appointment than after this last one. I could tell you all the details of what they saw, but there’s no need. Just know that nothing about her brain and face have come together as they normally should.

I kept asking questions about how well she will be able to use her eyes and ears and other organs, and eventually the doctor just stopped me. While I was sitting there thinking about how her childhood might play out, I was forgetting one key thing. It doesn’t matter how healthy her eyes and ears and every other necessary organ are, because it is her brain that tells these organs what to do. Our brains are on a continuous loop of telling our heart when to beat and how fast to do it. Her brain can’t do that. It can’t really tell any of her organs what to do. Right now, it is Ruth’s brain that is telling Pearl’s body what to do, and when we cut her umbilical cord, she will be on her own.

I don’t know why I didn’t think of that before, but when she explained it to me, I went into shut down mode. I started to realize that there truly isn’t a “3 years down the road” for Pearl. There is no having the privilege of feeding her, wiping her face, or helping her to breathe. The doctor said if we are looking at 15 minutes, 15 hours, or 15 days, then she expects us to be more at the 15-hour point. She mentioned that even if we wanted her team to intervene with things like a respirator when Pearl is born, that she would probably tell us “no.” She said that respirators and resuscitations won’t heal her brain, and would only prolong the inevitable. We weren’t prepared for that, though if you had asked me two weeks ago, I would have told you otherwise.

This has brought up so many questions and frustrations. Truths that we would have taken for granted 2 months ago now seem so elusive. I know that scripture promises suffering, and I know that we are instructed to take these pains and suffering to Christ, but I don’t know what to do with suffering that seems to come from the hand of God, himself. People don’t make people. Satan doesn’t make people. Only God makes people. He forms them in the womb, and I don’t know what to do with that. I hear people say that God’s heart is breaking over this as well, but I also know that he is the only one completely capable of undoing this. It’s weird to say out loud, but I’m wondering why, if his heart actually does break over this, he is choosing not to intervene.

I also believe that all things work for our good and his glory. Right now, I can’t see anything that would accomplish those two purposes more than a healing touch to my daughter. I also realize that in my last email, I mentioned that I knew there would come a time when everything that we see will be seen through blurry eyes. Once again, more words that I said without understanding the weight of them. I hope that when I’ve talked with grieving people in the past, I’ve been more careful with my words than I have been when dealing with my own grief. I hope I didn’t just throw around hollow words that sounded good. I don’t remember.

I’ve tried digging in to Christ’s prayer in the garden. I’ve tried to understand that my family’s suffering pales in comparison to what Job went through, and yet he was faithful. None of these truths seem to resonate with my soul right now, though I know the problem lies within me. It’s not as if God needs to earn my trust. He’s already trustworthy, but I can’t really make my heart feel the same things that my head understands clearly. I hope this passes soon. It is debilitating.

Please continue to pray. Pray that this part of the grief process will cycle out quickly, and that peace and trust will return to our hearts. I don’t really know how to hold on without it. I’ve heard enough about grieving to know that some of this is just part of the normal cycle, so I’m not freaking out about it. I’m just ready for it to pass. I miss the feeling that Christ is as in tune and present with Pearl as we are. There was so much peace there.

Ruth is about a week away from starting her final trimester. Already, most of Pearl’s life might be behind us, and yet it still feels so new. I don’t want to waste her life by being angry with God. I want to soak up her life and all that God wants to do through her. I want to experience the joy and be able to celebrate her. She deserves better than the way I am feeling right now. I can’t wait to meet her, but I am not ready to say goodbye.

We can’t thank you all enough for walking with us right now. There are times when we feel very keenly as if we are being hung out to dry, alone, but that is so far from the truth. We are inundated with moments of beauty from our friends and family. A lot of people go through these things without that. We are grateful. I haven’t been asking for a miracle these last few days, but please continue to do so. I think there are times when friends and family (and strangers) are able to stand in place and plead our case before God when we aren’t feeling able to. Please keep petitioning Heaven on Pearl’s behalf. Though we feel defeated at times, we know that nothing is over yet. Thanks for praying, and for being present. Thanks for not always knowing what to say but always being willing to listen. You all are a tremendous gift.

Come, Lord Jesus.