Yeah, But Look at Her, Now!

IMG_2761A year ago today, was a bad day. What follows is the text from an email that I sent out to a few friends and family members on March 22, concerning what took place on the 21st. We knew so little back then. We didn’t even know her name was Pearl, yet! What a testament to God’s sovereign and good design, and to his people who have pled Pearl’s case before him for so long.

Friends and Family,

As you may or may not know, Ruth and I are pregnant with our 3rd child.  She is 20 weeks along, and yesterday we went for the ultrasound to find out if we are having a boy or girl. Our day started like any other grumpy day when you get up too early, but after spending hours in waiting rooms and meeting with ultrasound technicians, midwives, and a specialist, we were devastated with the news that our baby girl has a rare disease known as holoprosencephaly.

You can look it up online to get the full spectrum of what we are dealing with, but the term that was used to describe her condition is “not compatible with life.”  Basically, her brain is fused into one small mass, instead of separating into two growing hemispheres. Her face has also failed to develop the necessary structures needed for survival. Though she is growing and kicking, and even moved her fingers during the ultrasound, the doctors say that she will not, in all probability survive very long after delivery. They have encouraged us to go ahead and induce labor now, as that would ease the prolonged pain of delaying the inevitable.

We have chosen to carry her to term, though. We feel as though we know what would happen if we were to deliver her now. In her current state, she could not survive outside of the womb. Though there is a strong possibility that she will not survive even if she makes it the full 9 months, we are going to push through and pray for a miracle. The same God that raises the dead to life, and makes people out of dirt is perfectly capable of mending a broken brain, and bringing form to an unformed face.

We know that we are in for a long race: one that we are ill prepared for. Baby girl’s body will continue to grow, as will Ruth’s. She will continue to kick and move about. There will be signs of life that will occur, all the while we will be preparing to deliver her and say goodbye to her at the same time. The reality of this is going to be tough for Ruth as it continues to unfold. The last 24 hours have already shown us moments that we feel fine, and moments that seem as though the world has stopped turning. We don’t feel as though we have a choice in the matter, though.

There is so much more to say right now, but I know this email can’t go on forever, so here is my plea: Join us in praying. Not just today, but for the long haul. Her due date is August 12. Please pray for Ruth and all that she is going through. This has already been the hardest thing we have ever endured, and we are just 1 day in. Pray that Brennan and Abbey will somehow grasp some of what’s going on, and God’s goodness through everything. Its tough to shut the bedroom door, cry for a few minutes, and then engage 2 happy kids who just want to show you their latest LEGO creation, and beg for a snack. They don’t understand the weight of this, nor should they. Please pray that I will know how to shepherd my family. Everyday logistics, such as looking for work and fixing the car feel inconsequential, though I know the opposite is true. Please pray for our baby girl, that the Lord will see fit to heal her broken body. Pray that she will continue to survive and grow. I know that God will be glorified in this either way, and that he will sustain us long enough for us to glorify him through living until he sees fit for us to glorify him in dying. We are praying for a miraculous healing, though we are bracing for the reality that he may not see fit to do so.

Thanks for taking the time to read this and please join us in praying.

Eric and Ruth Brown

A Belated Update.

IMG_2733Yes, friends. Life is busy for us these days. Busy, but in a fairly normal kind of way, and that’s a good thing. I’ve been getting a lot of the, “Hey, I’m not on twitter and the blog hasn’t been updated. How’s Pearl?” texts lately, so it’s probably time for an update.

There’s not a lot to tell you about in terms of how she is doing. She’s turning into quite a chunk, though! Her feet and head stay small, but everything in between keeps spreading out! She’s had no bouts with sickness recently, and that has really helped to keep her stable. Things have been fairly dialed in, in terms of her seizure medications, and she’s even eating the same amount as any other kid her age/size should eat! That’s pretty awesome, even if it is through a tube. Here’s to hoping she braves the allergy season without many issues. She is now 7 ½ months old!

As for me, I just wrapped a tour this past weekend, and it went really well. We were mostly in and out of town for about 5 weeks but we did have one run that kept me gone for 2 weeks. It’s behind us now, and Ruth and the kids did really well back home, thanks in large part to so many in our community reaching out to shoulder some of the load.

It feels good to be back working. I don’t know when I’ll be working next, but that tends to be how this industry runs, so we are fairly used to living in that tension. It was also my first tour of working strictly through my lens, and it appears that other opportunities are beginning to open up in that realm. That’s an answer to prayer.

Though we have found a bit of normalcy, life is still very hard. That’s not a complaint, but I’m just stating the facts, lest you think everything is smooth sailing over here. Once again, though, we’ve learned to operate within the difficulties with a bit more normalcy than we ever would have imagined.

If I’m honest, the downside of learning to operate within this normalcy means that we often forget that God is actually carrying us still. We get so caught up in the goings on of everyday life, that we forget that normal life in itself is a gift of grace. I know as soon as things fall apart again, we’ll easily find time and energy to plead our case before the throne, and I miss that. We never stop going. In a weird way, I miss the quiet nights in the NICU where every moment was rich, and all conversation was intentional and meaningful. These days, we’re just pushing through, rarely stopping to bow in awe of everything.  I don’t suspect that we will find that to be a sustainable approach to things.

I’m thankful for the recent encounters and letters from strangers who have helped us to zoom out and put our lives back into perspective. It’s so necessary. I guess this is why scripture encourages us to share the gospel with each other over and over again. Unless we use those words to speak into each other’s hearts, we will forget to meditate on them. I’m thankful for friends and strangers who are able to look in from the outside and tell me what they see God doing in our family. That’s rich, and we are grateful.

This week is also HOLOPROSENCEPHALY AWARENESS WEEK, so please head over to familiesforHoPE.org and check things out. There are so many great stories to read over there, and there’s even a store if you want to pick up some gear to show your support. Or if you’d rather, there’s ways to simply donate. I can tell you that Families for HoPE is the frontline for supporting families who are dealing with or have dealt with an HPE diagnosis. There’s not another organization out there that is doing what they do, and they are extremely small. All that to say, if you feel up to donating, I can promise you that there’s not some corporate overhead that has to be met before the money will be put to good use. Thanks for checking them out!

-Eric