An Open Letter.

I don’t know why I have chosen to post this publicly, rather than sending a private email. I’m posting this with a decent amount of trepidation, as I know that many people read these words, and I do not want my intentions to be misunderstood. I’ve chosen to withhold a name for many reasons, not the least of which is the fact that my goal is not to be passively antagonistic and condescending. Nor is it to try to pit people against each other or to start questioning character. After all, we are all just trying our best, here, but I feel these things need to be said. Perhaps my hope, like with everything else on this blog, is that we can share, edify, and encourage each other as we attempt to walk through this world that is wrought with brokenness, looking collectively toward the day when everything will be redeemed and in the words of C.S. Lewis,

“Heaven, once attained, will work backwards and turn even that agony into glory.”

~

IMG_4011I can’t tell you how many times I’ve sat down and written to you, only to find myself deleting the files out of shame and embarrassment.  You are much older and more educated than I am, and deserving of honor and respect. But more than that, you are an image bearer of the Creator and King of all things, and that alone means that what I’ve written in months past can’t apply to you. If I’m honest, by now the memory that I have of you looks like one of those old black and white yearbook photos that someone took a Sharpie to, and for that I am sorry. I mean it. My thoughts toward you have been so counter to what I hope to impress on your heart through this letter. By God’s grace, I am working through these emotions, and I feel that I can write with a calm heart to encourage you in what you do, because you have an amazing job.

My name is Eric Brown, and my wife and I sat down in your office on the afternoon of March 21, 2012. We had just finished our 20-week ultrasound and were sent by our midwife to meet with you. The news that you delivered that day has changed our lives forever. You walked in, carrying what I’m guessing is an old medical encyclopedia, and thumbed through the yellowed pages to find where you had put your mini post-it notes. Alobar Holoprosencephaly. Those were the words we couldn’t pronounce. Never heard of it, actually. In fact, we asked you to write it down so that we could look it up online when we got home. You can now Google it and pictures of my daughter will pop up… try it. I still have to look it up to make sure I spell it right, because it didn’t even make the cut for my spell check program.

After you delivered those words and showed us the pictures, you advised us to head over right then and there to terminate her life. The phrase that is often used is “terminate the pregnancy,” but even that completely undermines her humanity. We didn’t know it at the time, but her name was Pearl, and you advised us to end Pearl’s life. Think about it for a moment… An ultrasound and one old encyclopedia is all it took and you were ready to give up on our baby girl. We said, “no,” and you became visibly frustrated. I don’t know what your morning was like on March 21st. Perhaps you and your wife got into an argument. Ruth and I sure did before we left the house that morning. Maybe your tee time was cancelled, or maybe you too, have a child or a spouse with a disability and some days it gets so tough that you can’t muster an ounce of compassion for those around you. I know those days. I have them all the time. I don’t know, maybe you had the best morning of your life, and it’s just regular practice for you to treat families with distain, but according to the titles of some of your works, that’s probably not the case. If it is, stop. Use your education to write papers, but don’t sit down in another room with brokenhearted parents.

Though I have distorted the memory of your appearance in my head, I have a distinct memory of the phrases you threw our way that afternoon. “You’ve got 2 other children already. Can’t you find comfort in that,“ as if the goal is just to have a family, rather than to actually care for and shepherd these individual and unique children as the gifts that they are. We actually had 3 children at the time. Still do, and still will 10 years from now, regardless of what side of eternity they are on. You need to understand that losing a child is always hard. It doesn’t matter how long their life is, or whether their life is lived only in the womb, or for years outside of the womb. I’ve talked with many parents who took the advice that was offered to us, and now they see Pearl and wonder what might have been. I’ve never talked with a parent who regretted choosing hope and life in spite of a poor diagnosis. To treat an unborn child as the child that “almost was” or “might have been” is a tragedy and a terrific misunderstanding.

“What? Do you guys need to see more pictures,” as if these children in your dusty old book don’t bear the image of the same Creator that you do…as if they are horrific looking, nameless statistics, and not actually someone’s children…as if someone’s appearance or productivity validates their humanity. Imagine that… these kids who are in fact beautiful, bear the same image as you do. You both reflect the image of God, and you think they look horrific.

“Well, I can’t advise that and there’s nothing else I can do for you then. I can refer you to someone else.” As if you aren’t twice my age. At the time, I was 30-years-old, sitting in a room with my wife and my unborn daughter. Nothing else you can do? Sir, there was so much more you could have done. If only you knew the power that you wielded that day. You could have delivered the same diagnosis and even used the same phrase, “not compatible with life,” and we could’ve walked out of your office with hope in our broken hearts. How do I know that? Because we spent the next 17 weeks meeting with other specialists who delivered the same diagnosis over and over again, but they spoke as if it mattered to them that my daughter had a poor chance of survival. Through often-teary eyes, they spoke with wisdom and not merely knowledge or education. They had compassion and walked us through the absolute hardest thing we’ve ever gone through. More than that, they hoped along with us. They celebrated with each ultrasound that she was still with us. They took time to be present in spite of demanding schedules. They allowed themselves to understand the weight of a prenatal diagnosis that is not compatible with life. Not you, sir. You callously brushed us off as we chose to hope against tremendous odds. We heard the diagnosis clearly, studied it at nauseam, and decided to hope, trust, and pray, and every other doctor we met with encouraged us to do just that. You missed it. Instead, you addressed us as “kids,” and insinuated that our decision was ridiculous.

Pearl Joy Brown was born on July 27, so if you’re doing the math, you will see that today, January 27, 2013, she is 6 months old. I don’t know what newspapers you read, but I’ve often wondered if you’ve ever stumbled across one of the many articles that have been written about Pearl, and if you have, I’ve wondered if you’ve recognized our names. If I’m honest, I hope you’ve seen every last one of them. I hope you read the comments on the Huffington Post article and saw just how dark it can be inside of a heart that has no hope. I’ve hoped that you’ve seen that although we never heard God answer, “yes” to our prayers, we can clearly see that he answered “yes.” I’ve often wondered if you’ve ever looked up Ruth’s chart, or Pearl’s chart, but then I remember that especially in your field of expertise, children with not compatible with life diagnoses are a pretty regular occurrence, and though she means the world to our family, you may hear about these miracle babies all the time. If that’s true, though, you ought to have certainly encouraged us to hope.

So, yes, Alobar Holoprosencephaly is often not compatible with life, or at least not compatible with a long life, but not always. There’s no way to know the destiny of these babies you are diagnosing, and you ought to handle it as such. It would be an honor if you would print out one of these pictures of Pearl and put in your book where you previously had sticky notes. That way, next time you must deliver the heart breaking news to a young family, you can pull out the picture and allow for hope. Maybe actually put your arms around them and say,

“Listen…  Alobar Holoprosencephaly is often not compatible with life. Statistically speaking, there’s a strong chance that your child may not survive to term. I can’t say for sure, but you need to know the severity of this diagnosis. What I can say for sure is that this is a picture of Pearl Joy Brown. She has an incredibly difficult and complicated life. She has all sorts of trouble, but you should see her smile!  She has already celebrated her 6-month birthday and is capable of things no one ever thought possible. There’s no way to know if she will have a 1 year birthday or even a 7 month birthday for that matter, but if you want to hope, I will hope along side of you. I can promise you it’s worth it. If you don’t believe me, look it up for yourself. There are families all over the world who chose to hope in the midst of an extremely poor diagnosis. Some of these children lived outside the womb for only a few moments. Some of them did not make it to term. Some of them have lived for many years, but all of them have mattered. Your child is already here. Your child is alive today, and the length of her life has no bearing on the meaning of her life. I can tell you that if you choose to hope in spite of this poor diagnosis, you won’t regret it. Your heart is going to be more broken at times than you ever thought possible, but this child is a gift to be treasured. If you chose to hope, I will hope along side of you.”

I do not know what your spiritual beliefs are, nor do I assume that you and I share the same beliefs. But I do assume that you entered this field because you care about people, and because you want to make a difference. I don’t know that for sure, but if that is the case, then please take time to think about what I’ve said. You have a tremendous amount of knowledge, or you wouldn’t be in this position at all, and because you are in this position, you need to understand the amount of power you have. You have the power to build up or break down these families that sit in your office. You don’t have to lie to them. You can deliver the same news without delivering hopelessness. Children with special needs are a gift to the world, and their lives ought not be terminated because of statistics. Whether they ever have the opportunity to live outside the womb or not, they change everything for those that love them. Length and quality of a life have no bearing on the meaning and dignity of a life.

If you do read this, this is an honest invitation for you to come meet Pearl. I believe that if you can see her and hold her, you will understand the dimensions that we already understood when we were in your office, but you were not privy to at that time. I hope that all of this comes into focus clearly for you, and that you will be eager to wrap your arms around these families you are privileged to meet with. That may not be in your doctor job description, but it is in your human job description. Please do it well, and thank you for your time.

Eric Brown,
Husband to Ruth and father to Brennan, Abigail, and Pearl
1.27.2013

A Beautiful Success!

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A Beautiful Success!

Surgery was a success. She had an amazing team of folks working with her, and she came off the ventilator within minutes after the procedure. Praise God for another milestone! At this point, she has been tolerating pedialyte but is having a lot of seizures. That may just be her response to pain, but please be praying that her body will calm down soon. Thank you for continuing to pray this sweet girl through life.

Allow Me to Boast…

IMG_0387It’s rare that I update this frequently, but there’s a few things I wanted to tell you about, not the least of which was our vacation! Well, it was an overnight trip, at least. Thanks to the generosity of friends and “strangers”, we went down to Chattanooga for a night and it was glorious!

We’ve tried so hard in recent months to find ways to just breathe as a family, to enjoy each other, to relax and to laugh. Those moments have seemed elusive at best. There hasn’t been much levity in our home and the older children have been more than patient, as we spend so much time managing the logistics of Pearl’s care. They don’t complain. They just adapt and occasionally ask the in home therapist to take a look at their LEGO creations. There are times when its tough to watch your children having to figure out ways to navigate waters they maybe shouldn’t have to navigate.

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So we got away…and they played. And we laughed. And they went swimming and we ate everything in sight. We went to the hotel arcade and stayed up late in our hotel room. We even made it the aquarium! It was just what we all needed. I feel like we’ve all come home refreshed and ready to tackle this next milestone in Pearl’s life on Wednesday!

The plan right now is for her to go in on the morning of the 23rd, and they will perform a Nissen fundoplication and also put a mickey button in her belly so that she will no longer have a feeding tube down her throat. As of Friday, everything seemed good to go, but they were quick to tell us that if anything seems concerning to anesthesiology when we get there on Wednesday, then we will bail on the idea for the time being. There’s always risk associated with any operation, and since Pearl is Pearl, if they aren’t comfortable proceeding, then we are completely willing to heed their advice. The last thing any of us want is for them to attempt something they aren’t entirely comfortable with. Everyone that we’ve met thus far seems more than competent, and wants to serve Pearl in the best way they can. I don’t know if she could be in more capable hands. They’ve told us that we can’t really know what to expect in terms of in-patient recovery. It could be as quick as 3 or 4 days but also as long as a couple of weeks if there are complications. Please pray for discernment for the team, for an uncomplicated procedure, for quick recovery, and for the family to maintain perspective, gratitude, and joy through this season of parental shift changes and hospital stays. I will say that this hospital stay is very different than previous ones. This is the first time when we are going not because her survival may be in question, but because she is surviving well and we are looking at a way to help her thrive! We are grateful for that.

IMG_0327And speaking of gratitude, I want to quickly hit on my previous post… There’s a lot of ungratefulness and frustration tucked in there. I don’t know, maybe it’s not “tucked in there,” as I’d like to think. Maybe it’s blatant and screaming loud. Maybe offensively so, I don’t know. But here’s something I don’t want you to miss. Yeah, I get frustrated all the time. I sometimes have weeks on end where reception is fuzzy and everything appears through a dark, hazy, and sometimes-angry lens, and it gets pretty dark in my heart.

But here’s what doesn’t happen. God doesn’t quit. He doesn’t stop carrying my family. He doesn’t stop pursuing me. He doesn’t pin me against the wall and remind me that he has given me everything that we all prayed for. He doesn’t hang me out to dry, stewing in my own self-righteous entitlement. No, he calms my heart. He leads me beside still waters. He wipes the filth off of my lens, sends a plethora of perspective adjustments, and then sends me on an overnight with my family. Sure he finds me guilty of all of these things, but he did that a long time ago, right before he picked up the tab for that, too. He’s relentless in his pursuit. He allows me to sink below the water but never allows me to drown completely.

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All that to say, if you hang around me for more than 10 minutes, you’re going to watch me throw all my cards on the table and maybe you’ll see that I bent one of the card corners. It’s a mess inside my heart, but God is good. He never lets go, and my heart does not intimidate him. He knows what to expect from his sheep. That’s why he carries a rod and a staff. So you’ve seen that maybe my faith isn’t all it’s cracked up to be according to what you may have read in articles. Instead, it’s whom that miniscule amount of faith is directed towards that is more than he’s ever cracked up to be. There’s the good news. I’ll boast about that.

-Eric

Life at 24 Weeks

Pearl at 24 WeeksI’ll start this post by saying that Pearl is doing phenomenal! She will be 24 weeks old right about the time I post this and her 6-month birthday is right around the corner! Her lungs sound as though they have completely cleared up and at this point, it seems that her medication has her seizures very much under control. While we were in the hospital over Christmas, they did another EEG and found that she was having several hundred seizures a day though she doesn’t always manifest them physically. According to her therapist, that is likely attributed to her low muscle tone. Either way, the doctors revisited her medication after the EEG and that seems to be yielding wonderful results. Now that her lungs have cleared up and her seizures are under control, she is sleeping much more peacefully. She’s also started smiling a good bit more. And by smiling, I mean smiling that can’t be mistaken for random muscle spasms. She seems to notice more when we engage her and she herself also seems more engaged. Obviously, not to the point of a healthy 24-week-old, but she is doing great.

Right now, she is scheduled to have g-tube surgery on January 23rd, and if all of that goes according to plan, her quality of life should go through the roof. She’s had this tube down her throat her whole life. She will also have a Nissen procedure to help with her reflux. As of right now, fluid can easily get into her lungs but the Nissen should reduce those risks. She really needs to stay healthy and cold free until her surgery date. If she’s not at 100%, then they will not perform the surgery for obvious reasons. Also, we are still waiting on the final word from anesthesiology as to whether they believe that she can tolerate coming off a ventilator after the procedure. The surgeon doesn’t foresee it being an issue, but he said he’s never had a patient with HPE, either. We’ll see. This surgeon seems to be one of the best in town at these procedures, and we are extremely grateful for that, but please join us in praying for Pearl in these matters.

As for everything else, there are many changes on the horizon. We really need to make a few changes in terms of some of Pearl’s care providers, and that feels like a daunting task. I won’t go into details here, but there are a couple of things that we’ve hoped would get better but haven’t. We’ve tried to work with what we’ve been given, and tried to just be grateful for what we have, but at the end of the day, she needs to be treated with dignity and honor as an image bearer of the Creator of all things. That has nothing to do with HPE… that has to do with being human. It’s so tough. Ruth and I both are extremely non-confrontational but we have been charged with caring for all 3 of these kids and if we see things that can be improved upon, we need to address those issues.

I’ve never had a problem with lucidity here, so I’ll go ahead and say that there are times I want to pull someone aside and say, “Hey, you do realize that you’re in Pearl’s life because life isn’t necessarily going well for her, don’t you? You can’t just go through the motions. You have to be vigilant, and if you can’t be that, please say so. What you do matters…a lot. This is my daughter, not an invoice for insurance.” Man, I know that sounds super entitled, but it’s where I am. Please pray for clarity in these decisions. Pray for cool heads on our part. There are times when we walk away from an encounter or a phone call, and want to scream. I don’t feel as though we are moving hastily, but the time has come to move on a few things. This part is stretching us, for sure.

We are also probably going to try to sell our home this spring. We’ve got to move out from 700 square feet. We really can’t get out all that much so we need to have a place that we can all be at one time, without feeling as though we are smothering each other. The kids need a yard that they can use. If we aren’t able to take them to the park or on walks like we used to, then we need to have a place where they can just run and be kids. Pearl is also outgrowing her living room apartment space and will likely need a crib soon. We’ve got no place to put a crib! This, like just about everything else over the last year, is going to take a miracle. We need to find a realtor who understands that selling our house will probably take twice as much work for about half as much money as they are used to. It’s not a million dollar property, and nor is it really “stage-able”, meaning there will probably be a suction machine and an IV stand with a feeding pump in the living room when they show it to prospective buyers. We need a realtor who has the time, energy, and will to carry most of the weight, and we need a buyer who is not put off by walking into a living room that sort of feels like a hospital room. We also need to find a new home (hopefully still in East Nashville) that fits us and is in our price range, and a mortgage broker who can maybe pull out a decent mortgage in spite of my not working so much of last year. So you see… we’re in miracle territory on this too, but that’s okay. I feel like we live in that territory most of the time and we aren’t intimidated by that. It’s not up to us to be movers and shakers who make it all happen. It’s up to us to do our best, and to be present, abiding in Christ, trusting him as he works all things.

So yeah, there’s a lot on our plate right now. Pearl’s doing really well, as are Brennan and Abbey, and they didn’t see anything weird about eating Subway in the empty hospital cafeteria on Christmas day. They don’t call her Pearl anymore, either. Abbey started calling her Sweetie a couple of months ago, and that has morphed into just calling her “Sweets!” I feel like they’ve all 3 really started bonding well and looking out for each other. One tremendous upside to our busyness with Pearl is that Abbey and Brennan are really locked in together. Since they are so dependent on each other for companionship and playtime, they are finding all sorts of creative ways to get along, compromise, and really play well together. As a father, it’s beautiful to watch. What father doesn’t hope that his kids aren’t at each other’s throats but rather to see them interact as best friends? What a privilege and gift!

We are constantly in the midst of difficulty and beauty, frustration and wonderment, hyper engagement and loneliness. I never thought I’d say that, but this is lonely. It’s harder to relate to our peers than it has ever been, and if you had told me prenatally that it would feel this way, I wouldn’t have believed you. I miss balance. I miss that constant broken awareness of God’s presence that we felt early on. I feel like most days we are drowning in logistics, always running a day late and a dollar short. We all need a fresh wind and renewed perspective. It’s within that proper perspective of all God has done and continues to do that we find hope, gratitude, peace, and patience to carry on. Pray that that will come soon. I always say this, I know, but thank you for praying. Seriously. Thank you that you continue to read these posts that are well beyond the length of quickly digestible. The fact that I should be one of the most grateful people on the face of the planet is not lost on me, but what good is this Church if we can’t be transparent and honest about our struggles.