It’s Been Awhile…

ImageSorry, everyone. It’s been entirely too long since I’ve written here. Perhaps there hasn’t been too much in the way of pendulum swings that have merited me sitting down to write. I suppose we’ve also gotten tired of telling everyone the same update, all the time:  life is hard, Pearl is fighting, God is good, and a year and a half in and we’re still quasi-hanging on as God continues to sanctify us through this incredible story he has written. To say that we always see it as an incredible story would be a lie, though.

I feel like I can speak for Ruth in saying that we’ve grown somewhat tired of feeling like we sound like some whiney, broken record of Debby-Downer-isms. As of late it feels easier to throw on our game faces when asked how we’re all doing. There’s often not time to tell the whole truth, and if we did, you’d probably wish you never asked! No one likes to be the person who brings drama into every conversation. Life at this point continues to be a constant struggle to stay afloat in all categories. You’d think we would be much more dialed in by now, but I’m not sure that ever happens, and I’m not sure that is what God set out to accomplish within us in the first place. But that’s that, and there’s no need to dwell there. Everyone has difficulties.

Pearl is honestly doing better than we ever imaged she would be doing at 17 months. Better still doesn’t mean great, though the fact that she is even doing at 17 months is miraculous, still! She caught a cold back in early November, which turned into a downward spiral, resulting in her being intubated for the first time. The doctors think she just got too tired of trying to breathe through the cold and had just given up. A few days of being on the ventilator though, and she was back off of it! After a couple of hospital stays, she’s still at home and for the most part, doesn’t need much oxygen intervention. In a way, it was good to get our first intubation under our belts. We’ve been advised since day one not to ever put her on a ventilator (except during surgeries) because kids like Pearl don’t come off of ventilators and all we’d be doing is delaying and complicating the inevitable. Well, next time won’t be as scary as the first time. Check.

I’ve read that kids with HPE get more complicated as they get older, and based on our experience and from observing other children with HPE, I can attest that this is true! She’s almost 30 lbs of not-very-muscular love at this point; so even diaper changes have become quite the exercise. She’s not able to support any part of her body so for lack of a better word, she kind of flops wherever she is moved. She does have a new bed and that has helped, and we are going next week to get her fitted for a wheelchair. If insurance approves it, that’ll be a huge help! I remember before she was born, seeing other parents pushing their kids around in special needs wheelchairs and I would fall to pieces. I felt quite certain that Pearl wouldn’t be born alive, and I would get so frustrated with God when I’d see those other families. “Can’t we just have that, God? You don’t have to take her life. Just give her that life! Why are you saying, no?” Man, I was a mess, but his silence at the time was brilliant. I don’t know if we would appreciate the life that she does have as much as we do, had we known all along that she was actually going to survive. He was patient, we were kids, and he was right to be silent.

I also had no idea what all was going on behind the scenes when I saw those families with wheelchairs out and about, either. I had no idea how much effort they put into grabbing fast food, going to the grocery store, or even smiling on some days. I didn’t realize that it wasn’t 24/7 warm fuzzies and prayers of thanksgiving. I had no idea that admission into the special needs club required me to check my childhood oblivion at the door, but that explains my respect for other families in this club. The camaraderie within the club is second to none, and dare I say necessary for survival. I’m so grateful to have other families that we can relate to on those levels, though I do wish we lived closer to them! We often feel like an island in a sea of typical families, but that is not true.

The rest of the family is doing okay, too. Brennan and Abbey’s love towards Pearl and each other continues to grow, and the ways in which they are able and willing to help continues to expand. Abbey even hooks her baby dolls up to imaginary feeding pumps! Brennan has been homeschooling at a kindergarten level this fall, and it looks like he’s ready to move on to first grade material this spring. He loves everything about it, and sweet Abbey tries her best to follow in his footsteps. One of the blessings of being so homebound is that the two of them have become inseparable. The downside of that is that they’ve really figured out their united front when it comes to defending their cases to Ruth and me! Even that is a little sweet to watch though, as they have learned to have each other’s backs in conflict. The dynamic between them is beautiful to be privy to.

And Ruth is still the glue holding us all together, and her laugh still reminds me that God is good in the midst of difficulty. In between caring for Pearl, homeschooling Brennan, and cooking sessions with Abbey, she has found moments to pull some sort of semblance of a festive environment to our home for the holidays. I’ve never seen someone who lays her life down for her family in the way that she does. Since Pearl’s last hospital stay, our church has reinstated a meal calendar for our family, and our in-home nursing has increased to 80 hours per week. That has really helped Ruth to find a moment to breathe, though having nurses in our tiny home for 80 hours a week feels a bit like being on the Truman Show, in that almost every aspect of our lives now involves a third party listening in! We are grateful for the help, nonetheless and we make sure to take advantage of the moments in between nursing shifts. And while I’m at it, thank you everyone who has brought a meal or sent a gift recently. Those efforts on your part really do take an edge off of the complexities of everything. At their least, those efforts break the monotony of being homebound, while reminding us that we aren’t going through this alone, and that is more valuable than you can imagine.

So yeah, I feel like I’m writing things you already knew about, which means that once again, I feel like I just wrote a Christmas letter. Sorry about that, but at least I didn’t print it and mail it to you. It’ll be just the five of us here for Christmas this year, as leaving town with Pearl is not at the top of the list of things we should do right now, and folks can’t always come to us. It’ll be a different sort of Christmas than the norm, but hey… last year Pearl was in the hospital and we had to Skype with Ruth while the kids opened their presents in the living room. And then we met her at the hospital for a Christmas feast in the Vanderbilt Cafeteria Subway. Needless to say, Brennan and Abbey thought it was awesome. And I imagine they’ll think this year is awesome, too. Either, way…Merry Christmas, everyone! Thanks for still taking time to read. Sorry again, for not updating this as much as I used to. Thank you for understanding.

One Year!!

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(the above photo was taken on Pearl’s first birthday. The sparkle in her eyes has returned!)

So, yeah…What a year.

We celebrated Pearl’s first birthday this past weekend, at a park in the shadow of Vanderbilt Children’s Hospital. What an incredible celebration! Several dozen of our closest friends gathered to help us celebrate and it couldn’t have gone any better! It was a beautifully simple time of meeting new faces, catching up with old ones, and sharing in the food that everyone brought. The Tennessean ran a little update about the celebration this week, too! Thank you to everyone who came out and thank you for those of you who had a hand in helping pull this thing together. Thank you also to all of you who couldn’t make it but filled our mailbox with goodies, cards, and letters. You all made us feel like the richest family in the world!

Pearl is doing really great. After a couple month stretch of wondering if her little body was telling us that it’s too tired to fight anymore, she has once again turned a corner and is thriving. She rests really well, and is showing signs that her body is getting stronger! Her seizure medication doses are beyond the scope of what she should be able tolerate according to her weight but once again, she pretty much plays by her own rules. We’re grateful for a medical team that permits her the liberty to do so. When it comes down to it, it’s much better for her to sleep from the medication than to have the seizures continue to wreak such havoc on her body. We’re a long way from where we were on this day last year, still camping out in the NICU… folks coming in from all over to meet her and to share their story of how God had used Pearl. All the while we were staring at something called a pulse-ox that sounded the “hey, guys…she’s not very stable right now” alarm every 3-4 minutes. Little did we know that a year later, we’d still have one of those monitors in our living room and that these days, the alarm would sound much less frequently!

There’s also a feeding pump, oxygen machine, suction machine, and enough miscellaneous tubes, bags, and syringes to open her own medical supply chain. She’s outgrown her little basinet in the living room corner, and we’ve finally ordered her a quasi-hospital type bed. It’s pretty massive and when we ordered it, we were thinking we’d be able to get the loan for a home addition to give Pearl a bedroom/bathroom with wheelchair accessibility and room for a lift. Well, the bank didn’t quite see it the same way. Since her equipment has overtaken it, I guess we’ll now officially call the living room, “Pearl’s Room”. What a beautifully frustrating problem to have! We’ve certainly learned over the last year that nothing about the special needs life is ever easy but that everything is okay, and it could always be worse. It’s been a year of learning contentment, trusting God, striving for gratitude, and learning to not kick back against the times when God says, “no.” Abiding in Christ, as the kids say. That’s what we’re doing on the good days.

The other days are a little different. I suppose this last year has felt a bit like being pushed through some sort of instant callusing machine. Last year, this time, we were a couple of tired, wide-eyed kids, jaws on the floor, staring in awe at what God had done by even giving Pearl a single breath. I can say with a clear conscious that last year, we had no idea what tired really looked like!! I suppose in many ways, we’ve become a bit hardened by life at this point. After a year of thinking over and over that your daughter is nearing the end of her life, only to watch her get better yet again, you become a bit war-torn and tattered. That stuff will beat you down. Maybe that comes across in my writing, or maybe it’s apparent by my lack thereof. I suppose our fruits of the Spirit have developed some “bad spots” and have been nibbled on a bit by the bugs and worms.  Maybe our fruits sat out in the sun too long, or maybe my metaphor has become too longwinded. Everything’s fine, but I think it’s impossible to go through a year like this and not be changed, at least somewhat, in these ways. It is to be credited to God that we aren’t as bad off as we could be.

His continued presence, sustenance, and sustainment are unmistakable and evident. He lets us go to the dark recesses of our hearts, but always just for a moment before pulling us out, kicking and screaming, and showing us the beauty of his goodness. Though the fresh winds for our sails used to blow quite frequently, those winds have been fewer and farther between for quite some time now. In a way, I’m somehow grateful he allows us to wander. It is always after those seasons that his grace and goodness become all the more evident. Maybe he allows the noise so that when the clarity arrives, our hearts perk up.

Most days, it feels about like it actually is… We’re all wandering around this place that is hardly a caricature of what it was supposed to be. Frustrations grow, difficulties increase, and we find ourselves looking for new leaves to overturn, hoping that this or that will give our souls rest and help our hearts find peace. In actuality, all of these newly overturned leaves end up just like Leah in Genesis 29. One day, we’ll wake up and it will be Rachel, but not today. Maybe these symptoms are a little more severe when you have a child with holoprosencephaly, but maybe not. It sure seems that they are, but I know that we’re all under the same curse, we’re all toiling for the same thing, and we’re all frustrated by the lack of ease of life. We’re all trying to hang on, though sometimes only by a thread. I’m grateful that Christ is stronger still, and security relies not on our ability to hang onto that thread, but instead on his inexhaustible grip on us.

Happy Birthday, Pearl!

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One year ago today, on July 27, 2012, at 12:07am, we welcomed sweet Pearl Joy Brown into the world. From the moment she took her first breath – a miracle in itself! – she has blessed us all more than we could ever imagine.

Now, 52 Cupcake Fridays later, we will gather to celebrate her one year birthday! If you’re in or around Nashville, join us! {Click here for details.}

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Sweetest Pearl, Happy Birthday to you!

Thank you for bringing us joy.

Thank you for teaching us about love and hope and grace and life.

Thank you and your precious family for allowing us all to be a part of your amazing journey.

We love you, Pearl Joy Brown!

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A Possible Change in Direction

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.

-Eric

An Update, Long Overdue!

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a sweet cape from Pearl’s friend, Harley!

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.

Home, Sweet Home!

Photo Apr 10, 12 36 43 PMThis 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.

-Eric