If you follow Pearl’s story on twitter at all, then you probably already know that we had a bit of a difficult appointment with her pediatrician yesterday. It was difficult not because of the way the information was discussed, but because of the nature of what needed to be discussed. I can’t sing the praises of her pediatrician enough, and even as our discussion progressed, it was obvious that this wasn’t easy for her to talk about, either.
As you may know, Pearl has had an extreme increase in seizure activity over the last few months, and at this point they appear almost uncontrollable. Whereas we were hoping to discuss ways to get them under control before they really started to take a toll on her body, our conversation yesterday was that they have taken a significant toll on her body already.
The night before this last appointment, even as I scrolled through pictures from 6 months ago, it was obvious that Pearl’s awareness, energy, and overall health aren’t near what they were back then. Each seizure that she has makes her more susceptible to another seizure, and each one chips away at her physical and mental reserves in a fairly severe way. As we discussed this with her doctor, it became quite clear that yes, these seizures have been wearing her out for quite some time now, and because we see her every day, it has been less obvious to us just what a downward slope she’s been on.
I want to be clear and say that our discussion was not that Pearl’s life is certainly coming to a quick end. There is no way to say for certain at what point she will have her last seizure. We can’t know these things, but what we can say is that she has obviously been on a downward trajectory and as long the seizures can’t be controlled, that will likely continue.
Nor was our discussion that Pearl has days or weeks to live, and we should reconsider hospice care right now. Our discussion was that as we delve into looking at some other and maybe experimental treatments, we make decisions based on comfort and immediate quality of life for her more than on what treatments will mean for her, long term.
We’ve really been trying to find a sort of normalcy over this last year, and as Pearl has grown, we’ve been more intentional about trying to go about life at our normal pace, and had even planned a beach vacation for July. Well, this puts an abrupt halt to that type of living for us. There’s not a normal life for Pearl. It makes no sense to try and carry on as if that’s possible or even good for her or the rest of our family. The closest thing I can think of to compare this to is right after 9/11 when we were told to get back to the mall and act as we hadn’t been hit hard by terrorists, so they wouldn’t “win.” Well, the reality was that we were hit really hard. And it stung. And life ought to stop long enough to work through these things. You don’t carry on as if nothing happened. They won. Not long term, but for that moment, they won. Maybe that makes no sense at all but I don’t know how else to explain it in a relatable way.
So that’s where we are. We all had a bucket of cold water thrown on us yesterday, and we are wide-awake to the reality that Pearl is not doing well and that her body is worn from the seizures. We’re not giving up, and we hope to try some new things, but we are processing things through a different perspective than we’ve had in quite some time. Pearl’s body is weak and tired, and we’re going to operate and make decisions based on that more than we have been doing.
We’re still going ahead with plans for a 1-year birthday bash for her. In fact, go ahead and mark your calendar for the afternoon of July 27th. We’re planning a picnic/potluck style party at Dragon Park here in Nashville. If you’re not familiar with Dragon Park, it’s fittingly right across the street from Vanderbilt Children’s. If you are reading this, we’d love for you to come out. We’re hoping that having the party there will help those who we may not know as well still feel comfortable coming to celebrate. I’ll post more details here as plans come together.
Please continue to pray for healing. Please pray that her body will be able to rest, and that she will be able to find enjoyment in whatever days she does have with us. My mom said it well to me last night, when she said that God has been so good to gift us all with these days with Pearl, and at some point he will be so good to her to give her no more days. I think that’s a good perspective to maintain. Oh, to be privy to that conversation that Christ will have with her when she comes home… To hear him explain it all to her, to watch her face light up as he explains all that she has accomplished for the Kingdom, without even trying! To hear him tell her about himself, and all that he has done for her! That’ll be a sweet day for Pearl, and a bittersweet day for us who are still on the way home. Thank you for praying, and thanks for sticking around all this time.
Just when you thought this blog had fallen by the wayside, yet another victim of the fat trimming we’ve done in our life over the last several months, just to stay afloat… Well, this thing isn’t done, though there really hasn’t been a whole lot going on that has merited its own blog post, I guess. In a way, it’s been so long that this will probably feel like one of those Christmas letters that you love so much and never throw away… unless you’re like me and throw them away before reading.
I’m happy to report that Pearl is doing really well. At the moment, she’s battling the same horrendous cold that the rest of the family has been battling over the last few weeks. She’s had more viruses this year than a public library computer, but she keeps beating every one of them! It’s incredible to think that we are starting to look at what her one-year birthday party will look like. In one sense, I want to throw a party so big that it’ll make the fraternities at Vanderbilt blush. The other side of me says get quiet. I go through and read the blog posts that I was posting last year this time, not having a clue that we’d be where we are today. That is simultaneously a reason to shout to the top of our lungs and a reason for silent tears of gratitude and awe. In a way it calls for a bit of reverence as Pearl’s story, just like everyone’s, is about God and not about her. Who knows what we’ll do, but it sure looks like we might actually get to do something!
She has also started something called the Ketogenic diet. If you’re not tube feed, then this particular diet looks a lot like eating sticks of butter for lunch. Actually, with some folks it looks exactly like that! Wikipedia does a good run down of the diet in their first paragraph, but it is basically a diet that hopes to reduce seizures. Sometimes it yields amazing, life changing results, and other times it doesn’t work at all or can make seizures worse. Ruth did a bunch of research, and in spite of my skepticism at first; it seems to be helping. According to the lab work they’ve been doing on her, it isn’t helping much, but according to what we can observe, it really seems to be helping. And as seizures decrease, mobility seems to increase. Her muscles don’t seem to be staying as tight, and she appears to be doing more voluntary movement. She has however, started loosing a little bit of weight but we’re all watching that close and just trying to see if this is something we should stick with.
So that’s how Pearl is doing. Well, that and she now has a swimsuit and will hopefully be joining us at the pool this summer. That’s awesome.
As for the rest of us, we’re hanging in. There’s a lot of difficulty to life these days, and there’s a lot of hard stuff that I don’t really talk about much anymore. Perhaps we were so awestruck by those first few months, celebrating every moment, and I forgot how to talk about the hard stuff. Or maybe after being so publicly vulnerable with this whole process, I’ve started to retreat inward a bit.
I’d be lying if I said we find it easy to relate to most of our peers these days. Our lives are so dramatically different than most of our friends, it’s tough to find tons of common ground. I don’t say that as a judgment as much as I do, “that’s just how things are right now.” The upside of this is that our family as a unit has grown much tighter than it ever has been. Maybe that’s because we get each other. Obviously, we know quite intimately how difficult life is for the other one, and it’s something that you can’t really know unless you’ve been there. So many well meaning people try to offer guidance on things, but life with a special needs child is so different than life with healthy children. So, when you ask how we’re doing and we say, “We’re doing good,” that just means that we’re doing good on our family’s scale, which is probably a different scale than what your family uses. That’s not a good or bad thing. It just is what it is.
It’s not as if we sit around with heavy hearts all the time, though. In fact the opposite is true. Ruth said it well one day when she said, “Yes, we celebrate all that we’ve been given and all that Pearl is to our family, but there is also a level of grieving that constantly goes on.” It’s not easy to see kids that are half of Pearl’s age, smiling, giggling, and moving their body in a controlled and fluid way, while she struggles with the most basic things. I know it’s really not sexy to use the word, jealousy, these days, but I suppose there’s an element of it that is there. So shoot me. It’s tough.
Last week, Ruth and I made the decision to not put our house on the market and to not look for something bigger than our current 700 sq feet. We just can’t do it right now. It’s too daunting of a task. We don’t have enough in the tank to try to attempt a task as big as that, and it seems as though last week, God gave our hearts closure on pursuing that for us. We’ve said since day one that we didn’t want to press the issue, and that at any point, if it seemed like something that he wasn’t doing, we would bail on the idea completely. Maybe he is teaching us contentment. Maybe he’s working a plan altogether different. I do know that what he plans for us is so much better than what we settle to strive for. Yet another lesson that we’ve been taught through Pearl.
So that’s it, in a nutshell. Life is hard, but everything is fine, and God is teaching us contentment and gratitude. Yeah, believe it or not, we struggle with gratitude over here at Brown International. God has given us all the desires of our hearts, and yet we still struggle. Unbelievable. The older kids are done with parents’ day out for the summer, and Ruth and Brennan have been dipping their toes into the home-school water, trying to get their sea legs before the fall hits. That’s sweet to see. Abbey wants to sit in on every lesson and learn as much as she can… for about 3 minutes. We continue to be amazed at all that God has done with, through, and for Pearl. Having her in our lives is something greater than we could have ever imagined or dreamed up for ourselves, and we are grateful. We’re all doing ok… at least according to our families scale.
This photo was taken yesterday, a little after noon when Pearl came home! The older kids were ecstatic to have her back home, and its good to all be under one roof again. We have a follow up appointment on Friday, but it looks like the pneumonia is clearing up, and her seizure medications have been fine tuned yet again to keep those under control. Thank you all for praying this past week, and thank you for continuing to walk with our family after all this time. We never know what we’re looking at during times like these, and we’re grateful that you all shoulder the weight with us.
A 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
Yes, 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!
I don’t normally post stuff like this but I think the world should be privy to this beauty.
We get stuff in the mail all the time. Life changing letters from all over the world. People sharing their stories. People sharing our story. Some people write to encourage and some people write to be encouraged. They are all wonderfully meaningful, and awe inspiring. Some of them are light hearted, and some are heavy, and we love them all. Story swapping has been one of the richest priveleges that God has brought into our lives through Pearl.
One such card writer is an 83 year old lady from St. Louis, MO. Ruth and I both grin when we see her return address on the outside of an envelope. She has written a few times, and each time she grabs our hearts. We’ve never met, but her cards are some of the sweetest, most encouraging correspondences we receive. I’ve removed her name for privacy sake, but I have to share this with you all. You may have to click the picture to enlarge it. Enjoy.