Support the Browns

Pearl Joy Brown is the third child of Ruth and Eric Brown. She is due to enter this world on August 12 and has been diagnosed with alobar holoprosencephaly (HPE), a neural disease with low chances of survival. Ruth is a stay at home mom, raising 2 year old Abigail and 4 year old Brennan. Eric provides for his family by working merch on Christian music tours. All funds raised will help keep Eric home with his family for as long as possible and, in the event of the miracle we’re praying for, help support Pearl’s future medical needs.

If you would like to support the Browns, here are ways you can.

A Celebration for Pearl Benefit Show and Silent Auction

When: July 17-7pm doors, 8pm show
Where: Marathon Music Works
Artists: Jeremy Lister, Griffin House, Leigh Nash, Sandra McCracken, Steve Lee
Cost: Minimum donation of $10 at the door. Give as you feel led. Generous hearts welcome!
Proceeds from show and silent auction will Benefit the Brown family

Or you can give directly to the Browns via Paypal here.

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A Quilt for Pearl

I’ve been working on a community quilt for Pearl. When there is so much that seems out of our hands (although things never are quite in our control to begin with, are they?) the few things we can plan take on more importance than normal. This quilt is one of those things.

Brennan & Abbey both had several hand-made blankets. And store-bought ones and tons of other baby things. With Pearl, we aren’t having a traditional baby shower and we aren’t asking for baby things. We are prepared with a few basics – I’ve picked out a couple of newborn outfits and a friend has knit her a hat. If we have a miracle and get to bring her home, we can borrow or send family members out for any must-haves. On the flip-side, neither of my other kids were as known and prayed for and asked about than our Pearl. She is drawing our community together and sending our families and friends to their Bibles to see what God says about life and death and trust and strength. Family and friends and strangers have been in prayer for our girl.

So I’ve asked some of these friends and family members to help me make her a quilt. Some have sewn little “pinwheel” blocks and some have written out scripture on other blocks of fabric. These will all be pieced together to make a quilt. It is a tangible way for us each to help do something for Pearl. It is a symbol of the community of love and the truth and strength we find in God’s word. I look forward to having this to wrap her in when she is born. Thank you to everyone who has contributed! It has been so encouraging to read all the verses you’ve sent and the pinwheels are beautiful. I appreciate the time and effort you’ve put into this.

I have room for a few more verses – feel free to send one on if you are so inclined. I’ll have some help piecing and quilting in the next couple of weeks, then I’ll share a photo of it all finished.

 

~ Ruth.

March 22, 2012

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

March 28, 2012

I don’t know how to unpack this last week for you in a way that will be brief, yet will still tell the story well. I will try.

It’s been an amazing few days, filled with moments of deep sorrow and moments where we are so amazed at the privilege to be a part of all that God is doing. Our inboxes have been flooded with so many notes of encouragement and prayers. Thank you all for that. We do not feel alone. It feels as though we have all been invited in to an amazing story, where we get to watch God do what he does: He gives and he takes away. He gives us things that make our hearts leap for joy, and sometimes takes them away. He gives us things that hurt, and sometimes takes them away. He is doing all of it, and there is great peace in that. There is great peace in knowing that He not only has given our baby girl the means to cope with these things, but that He is actually forming her in Ruth’s womb. He is making her this way! He is the one knitting her together exactly as He sees fit. He has numbered her days since long before she was conceived. That is amazing. We know two things. He is sovereign, and He is good. Even when it seems as if those things don’t go hand in hand, we trust that they do, knowing that the confusion lies with us, not with Him. Perhaps that is the peace that passes all understanding.

We gave her a name last week; a name that Ruth has been sitting on for a while though I was never too keen on, until we received the news of her diagnosis. Pearl Joy Brown seems more than fitting though, and I cannot imagine her having a different name.

Yesterday we went back for another appointment. Though I could take 10 pages to tell you all that happened and all we were told, I will sum it up like this. We were given freedom to hope. The holoprosencephaly (HPE) diagnosis is the same, and there is a 50% chance that she has Trisomy13, which would certainly decrease her chance of survival. If you have done an internet search for HPE, you know that there are 4 types. As suspected, Pearl has alobar HPE, which is the most severe type. The realities of this were clearly explained and laid out for us yesterday. The doctor didn’t mince words during the discussion, but she was very clear that she and her team will hope with us. Though she knows how scenarios involving HPE have historically played out, she also agreed that she cannot see the future, and there is much that we will not find out until she is born. We did find out that she has a cleft lip, though we will not know if her pallet is affected until she is born. She has no nose, and her eyeballs are extremely close together. They are not set back in sockets in the way that most peoples eyes are. Her heart appears to be to strong and normal, though because it is only the size of a nickel right now, there will be more to see when we go back for our next appointment in a month. She is very hopeful that Ruth will be able to carry her to term, and even mentioned that a natural childbirth is the optimal way for Ruth to deliver.  That was great news. There is a chance that she will try to come early, meaning 2 or 3 weeks early, but that is fairly normal. We were so encouraged that we have a team of doctors and counselors who are just as passionate, hopeful, and involved as we are. We have a good team.

So many of you have emailed that you were praying for peace, and many of you have said that you were praying for a team of doctors who knew the severity of her condition but who also would give us the freedom to hope. These prayers are being answered! Please continue to pray for that. Please continue to pray for Pearl. Just like any other baby at 21 weeks, she is still being put together. Our ultrasound technician told us yesterday that she has seen ultrasounds go from devastating to completely normal before. A miraculous healing is possible. Please continue to pray for Brennan and Abbey. Abbey is completely oblivious to things, and that is good, but Brennan is a very intuitive little man and I think he is beginning to understand some things. He is much more clingy, doesn’t want to sleep without Ruth next to him, and has become a bit more obstinate. Some of this is normal for a 4 ½ year old, I know. I wish I could see inside his head and know how much he really understands. I hope that if he is picking up on things, we will know how to articulate that to us, and will know what questions to ask. We told them both yesterday that Baby Pearl doesn’t have a nose, but that she has the biggest, most beautiful eyes that they will have ever seen. They smiled and asked, “Ever? Wow!” We are trying hard to prepare them to meet her, and to let them know that God has fearfully and wonderfully made her, just like he has done with everyone. Please continue to pray for Ruth. So many of you have mentioned how strong she is, and it is true. She has shown amazing strength this past week. She will have some hard days ahead of her, and I am praying that she will feel the freedom to be weak, and that she will continue to lean on family and friends, and allow God to carry her through this. There has been so much sadness that has lifted since our appointment yesterday, and we will both be seeking ways to continue with a bit of normalcy. She is planning on taking another week off from teaching soap class, but she is feeling the desire to plug back in with her mom’s club. That will be good for her and the kids both. The kids need the normalcy, and her mom friends have been an amazing source of encouragement and strength for her. I need to begin looking for work, as I have no work on the books right now. Please pray that God will provide a job that will provide enough income to sustain us, but that will also allow me to be here with and for my family as much as possible. Please pray that God will give me wisdom as a father. Pray that He will give Ruth and I supernatural patience with Brennan and Abbey and that we will be aware of what it is that they need.

The prayers that you all have prayed are being answered. I know there are times when it seems as though prayer falls on deaf ears, and that there must be something more tangible that can be done, but let me assure that if there are times when that is true, this is not one of those times. A buddy of mine used the phrase, “petitioning Heaven,” and that is exactly what we are doing. He is listening, and is faithfully answering according to His will.

Thank you all for everything. I will probably not send one of these emails every week, but will try to update you as frequently as needed.
Eric and Ruth Brown
Here’s a reassuring wave from Pearl!

April 18, 2012

Once again, I’m going to try to be articulate in a brief manner, and again, I’m not sure I can do it. I’ve been worried about sending out too many emails, but from what I’ve been told, those worries are unwarranted.

We don’t have a medical update. We hope to have one of those next week after our next appointment, but as Pearl’s father I want to keep telling you the story of all that God is doing through her. What father doesn’t tell stories about his children? And… I can say that she is growing! She is strong and Ruth can feel her moving constantly. That is amazing.

We do not know how long we will have to share her with you, so my desire is tell you the impact that her life is making now. Right now, we can see clearly, and there may come a time when all that we see will be viewed through watery eyes. Thus, I need to tell you what we see while our vision is clear. You may need to remind us of these things when things get messy.

God is completely turning our lives upside down through Pearl’s life. The shock of hearing the news of her condition has worn off, and we are learning what this new normal looks like. The things that made us break down a few weeks ago now seem like normal conversation. I’m amazed when I realize the weight of the conversations that Ruth and I have with dry eyes. I believe that the peace we have comes only from Christ. It’s not as if we are unaware of, or oblivious to, the severity of Pearl’s condition, but we are more keenly aware now that God is executing a story that he wrote even before he created the world.

There is peace and comfort in knowing that she may fade from one side of the veil to the other without ever even knowing that she can’t see, think, or breath without difficulty. There’s also a peace in knowing that she may grow into an adult who knows only what it’s like to be carried by God, and that she will know intimately that Christ wants us to be weak and reliant upon him for all things, that we can’t even breathe unless he is pushing and pulling oxygen through our lungs. I am being taught this lesson very clearly right now, and I am grateful for that.

We truly feel privileged to have been given the opportunity to care for Pearl. People all over the world get the same type of devastating news every day, so it’s not as if we are unique or special. The amazing part is that God chose two of the most normal, unimpressive people that we know of and has given us the privilege of partnering with him in unfolding a story about a baby girl with only half of a brain and no nose, and a God who numbers days, makes people out of dirt, and rides in to town on a donkey, unlike any other king has ever done. He has used us to display himself. He has pulled us in close, because he knows that if he doesn’t, we will rebel and fall off the deep end. We have peace that passes all understanding, even while in the midst of something that should otherwise crush us. It’s not as if we’ve already gone through the fire and are able to look back at how he sustained us. We are in it, and he is good.

Everything is a gift. Pearl is a gift. Her life is a gift. Her diagnosis is a gift, and God using her diagnosis to show us himself, and then giving us the peace to be carried through this is a gift. This sounds like empty words and clichés, I know, but I wish you could see into our hearts to see that the opposite is true. I don’t know how to say any of this without using clichés, but God is good and his blessings, mainly the blessing that is himself, is so rich to us right now.

We have another appointment on April 26th. It will be with the neonatologist and also with a perinatal palliative care team that is basically a hospice team for infants and their families. We will have another ultrasound where we hope to hear more good news about her heart. If I’m completely transparent, we hope to hear a healthy diagnosis all around, though we know God has not promised this. It sounds silly, but I really want a good picture of her face, as well. That is something we don’t have yet. We are still hoping and praying for a miraculous healing. I believe, more and more, how capable he is of this. (Mark 5:35-­42)

The team at Vanderbilt is amazing, and it will be good to meet with them more and find out more about how Pearl is developing. I’m so grateful that they are caring for us. Thank you all for praying. Ruth and I are doing well, and the pendulum swings of our emotions are less severe than they were two weeks ago. We are on solid ground. Brennan and Abigail are also doing well. The conversations with them about Pearl are much easier, and they are both excited about the prospect of caring for their baby sister. Brennan reminds me not to toss their old baby toys, because Pearl will want them when she gets here. I do not yet know how to discuss the severity of Pearl’s diagnosis with them, or the fact that she may not be coming home. Maybe I will never have to have that conversation, I don’t know. Ruth had a friend tell her that she doesn’t need grace now, to deal with things that she doesn’t currently have to deal with. Perhaps I am in the same boat, and God will give me the grace to have that discussion if and when it needs to happen.

Please continue to pray for a miracle. I still believe that with a simple word, God can undo the “not compatible with life” diagnosis. He has answered all the prayers that we requested earlier. Thank you all for reading these long emails, and for praying. Thank you for the constant reminders that we are not alone in this. It’s been a few weeks since the original diagnosis, and I know that life brings about demands that can clutter your minds. Thank you for not forgetting.

I hope to have more information to share after next week’s appointment.

Eric and Ruth Brown

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.

Eric and Ruth Brown

 

June 2, 2012

It’s been awhile since my last correspondence with a lot of you. It’s been a rough few weeks. In terms of the grieving process, it often feels like one step forward, two steps back. It seems recently, the hard times come more frequently than the easy times, though there is a theme of joy that is constantly yet quietly running in the background.

For you, it may seem like the news of Pearl’s diagnosis came ages ago, and that the grieving process has had time to run its course. It may already have fallen into the “remember when” territory of your heart. For us, I don’t know how to say how substantially different it is. We are still in it. She is still with us and is still growing and we are still being changed.

It happens over and over all day every day. Our hearts loop everything we hear right back to thinking about Pearl. Even amongst laughs between friends, we cannot escape these thoughts. Nor do we want to. We are constantly stretched by the tension of reaching out to others, trying to connect and even be comforted, only to realize that the business of life and humanity’s constant pursuit of trivial comforts and happiness have caused our efforts to return void.

I’ve heard it said more than once that for some, dealing with the pain surrounding all of this is too hard, and they haven’t allowed themselves to think about her much. The pain and confusion seem too much for many, so they choose to engage neither. That is a travesty. Pearl doesn’t get the chance to choose how she impacts others as the rest of us do. It’s up to the rest of us to pick up the tab and find ways to involve her life in ours. It’s up to the rest of us to absorb the cost, push through, and be changed, because she is going to be fine. One day, very soon, she’s going home.

One day, Pearl will transition out of this world and into the presence of the Christ whom she never had the chance to reject. As parents, our most simple hope is that our children will grow to lean on Christ, and they will know what it means to be loved by God. Pearl doesn’t have that choice, and in a way that is a gift. Her brain will probably never develop to the point where rejecting him will be an option for her. The first time she ever hears his name will probably be a face-to-face encounter, and she doesn’t have to wrestle through some 21st century, westernized caricature of Christ that so many of us see through a dirty glass.

She, like the rest of us, will never cease to exist. There will come a time, maybe 10,000 years from now when we are all still existing for eternity, that her short life will seem no shorter than the rest of ours. In light of eternity, there’s not much difference between a 15-hour life and a life of 90 years. It’s all very brief. Her life doesn’t matter any less just because most of it will have been lived inside a womb. Her impact is no less either, if you will allow yourself to be changed.

So many have privately questioned me about our decision to bring Brennan and Abbey into the delivery room to meet Pearl after she is born. I want to challenge you in this. I want to push you to think about things from a different perspective. If her appearance is as diagnosed, will my other children be stung by this encounter? Will they be confused and possibly frightened?  Is there a chance that they will be scarred forever?

Yes, yes, and yes, but Pearl bears the image of the same God that Brennan and Abbey do. We do not need to hide image bearers from other image bearers. God knit Pearl together in Ruth’s womb exactly as he saw fit. He didn’t make a mistake. Things didn’t go wrong. He brought her form into being with the same intentionality that he has created everyone. So, what’s there to hide from? Again, in times of suffering, we pick up the tab for others. We push through the hard times, and we comfort those that are suffering. We weep with those that are weeping. We don’t just acknowledge that they are weeping. Brennan and Abbey may be scarred, but they will probably not be unchanged, and Pearl, by God’s grace will have her whole family there to walk her home. And what if this little girl with a hole in her face and bulging eyes does live? What if she lives to be 16 years old, and still has the same appearance? You wouldn’t say hide her for 16 years. Again, the length of her life on earth has nothing to do with the value of her life.

Obviously, we are in the midst of tough times, and I apologize if my words seem overly abrasive. You are dealing with two parents who are staring at a calendar, knowing that their daughter’s life on earth may very well be coming to an end, and we find ourselves constantly grabbing at straws with the hopes that Pearl’s life matters to others. There’s also a sense of all the good that we are experiencing through this pain and we want others to join us at the table and feast on it. Be changed, be awkward, be uncomfortable, have a sleepless night or two, but by all means don’t close your eyes and wait for the ride to be over.

We have another appointment next week as well. Please pray for that. I have a sense that Pearl is going to come much earlier than we have been expecting. I don’t have a lot to base that on, but I feel as though God is preparing my heart for this. You’d think that once your baby girl has been given a diagnosis of “not compatible with life,” that all the other news doesn’t really matter. It does. When you get that diagnosis, you find yourself hoping that at the very least, this, this or this will be good. When it isn’t, it can be devastating. You hope for small gifts amongst the hard times, and the small gifts matter more and more.

Thanks again for taking the time to read another of these long emails. If I can encourage you in any one thing, it would be this: sit still and engage the relationships around you. Even if you don’t know how, just try. Otherwise, you are saying that your comfort trumps the value of those relationships. Put the work into it.  You’d be surprised how much a lot of the other stuff doesn’t matter at all…  often times, not even a little bit. Don’t miss this.

Eric and Ruth Brown