Friends and Family,
In a weird way, it seems that everything that needs to be said, has already been said. But in another way, I feel like there are so many nuances of life that I want to share with you all, as these emails that I write are serving as a quasi-journaling experience for me. Thanks for being patient with me while I attempt to get a few things in writing.
I hope somehow, by being as steeped in her story as most of you are, that you will be able to glean a good bit about God’s sovereignty and goodness. I hope that you are able to come to grips with the fact that like Pearl, you will never cease to exist and that you find yourself pondering what life will look like for you in 1,000 years. These perspectives change everything, and by God’s grace, maybe you can reap all of the benefits of having a baby like Pearl without having to go through the dark seasons of heartache that also come with having a baby like her. It’s been so worth it already, and we haven’t even met her yet. The joy we are experiencing is such a huge payoff to this temporal suffering.
It’s crazy to think that we are coming up on four months since that first ultrasound when we found that our baby girl has holoprosencephaly. That’s almost a third of a year and it still feels like yesterday! On the other hand however, I scarcely remember what life was like without her. I don’t remember the naivety with which we used to talk and dream. I’m so grateful that we live in 2012 and we have doctors who can tell us at 20 weeks that our daughter is probably not going to make it. Without that knowledge, there is no way that we would have connected with her like we have. I never felt a connection this intense, or this early on with our other children. I assumed that we would connect on the other side of the womb. And we have.
We have been completely overwhelmed in recent weeks by our community. We have been carried in ways that I never fathomed, and if I’m honest, the amount that we are being carried is almost embarrassing at times. Even that embarrassment has been good, though. Having your self-sufficient, anti-gospel pride be obliterated publicly is so freeing. None of us are self-sufficient. That’s a lie. We need each other, and it is amazingly beautiful to see this play out. I can’t imagine what it would be like to go through this without a community such as ours. The reality is that that happens all the time, though. You all have carried us in the truest form. All the little things you do that you may feel are trite and meaningless mean the world to us.
As you saw in my last email, there is a celebration for Pearl coming up on the 17th. It has been astounding to watch this come together. Again, friends and strangers doing things that if they didn’t do, I wouldn’t have thought any different of them for not doing. And I know it’s different. I know that people don’t usually hold celebratory events for unborn babies with terminal diagnoses. I understand why they don’t normally do these things. I understand why there has been a fair amount of head scratching surrounding this concert.
But we have sat at the table of God and feasted on his goodness and mercy. He’s been so good to us, and so good to Pearl. He has not only given us three amazing children, but he has given us himself. I don’t know how to say that in a less “Sunday School” way or a way that makes more sense. After spending so many years trying to learn about God, he has chosen to reveal so much of himself to us now. I’m not sure our hearts would have been as soft to his revealing of himself if it weren’t for Pearl. It is such a privilege to have her in our life, and to watch how God uses her to change us, and from what you’ve said, a lot of you have been changed as well.
That’s why we’re celebrating. That’s why we want to shout from the rooftops. There is a weighty joy surrounding all of her life, but to deny the joy and only focus on the sadness would be doing her a terrible disservice. Like all of us, there is so much more to her than her weakness. There may well come a time in the near future where heavy grieving will be appropriate, but this night we will be celebrating. Both of these things seem proper to me.
You have all been amazing. We are so grateful for all the times you randomly check in to see how we are doing. Even the times you stand there speechless, not having a clue what to say, so not trying to say anything, speak volumes about your awareness of how heavy this is to carry. We love it when you don’t know what to say. Most of the time, we don’t either. Please continue to pray. Please continue to petition Heaven for a miracle. We want so much for God to give us a little girl that can model to the world what it means to have no concept of self-sufficiency, and to constantly remind us all how handicapped we are, and how desperately we need to be carried by Christ. Whatever the outcome, though, we are grateful. Thank you for walking with us.