Hey all, I’m popping in to let you know that I’ve spent the last few weeks telling a bit more of Pearl’s story over on Instagram. There’s a lot that many of you are quite familiar with if you’ve been reading this for long, but there may be a bit more to see, too! I’ve tried to take a photojournalistic approach to telling exactly what day-to-day life for Pearl, and with Pearl looks like with the hope of bridging a gap between two worlds. I’m not sure how long I’ll be telling this story via this means, but I’ve used the hashtag, #PearlHasHoPE so that everything will be easily searchable. If you’re interested, my Instagram name is @ebrown_photo. Thanks!
I’ll start by saying that by all accounts, Pearl is doing better than she ever has! Take that sentence with a grain of salt though, lest you have images of her doing long division, dissecting frogs, or quoting Socrates. Her better is still quite far from the norm, but I suppose she quotes Socrates as well as other kids her age. Her seizures have for the most part, been fairly under control lately and she hasn’t had a visit to the hospital in many months. Though she required oxygen intervention for most of the winter and spring, today she is breathing well on her own, and we don’t really monitor her oxygen except at night when she’s sleeping. She also got her first wheelchair earlier this year and that, along with not needing to carry oxygen and monitors allowed us all to get out a good bit last spring. The summer heat and humidity is bearing down on all of Nashville at this point and since Pearl doesn’t regulate her body temperature very well, we’re back to hanging indoors again… at least for now.
It also seems that she may be going through a bit of a developmental growth spurt, but maybe I’m being ignorantly optimistic. Though there’s really no way to be sure, there have been many times where it seems her sense of awareness is sharpening. If she is aware, she still isn’t able to really engage, but simple things like consoling her have become easier. And maybe we want it to be the case so much that we believe something not true, but it does seem that she is starting to do some combination of hearing and/or seeing! Again, that might not be the case at all, but often when we hold her, she actually seems to be making eye contact. Her therapists have mentioned that it’s common for kids her age to hit a development stride, so that’s not out of the question.
There was a recent bill signed here in Tennessee, which will allow for a 4-year study on the effectiveness of cannabis oil (medical marijuana) in treating epilepsy. In case you’re wondering, it’s just an oil that we could administer through her feeding tube. There would be no black light Bob Marley posters involved in administering this medication. We’ve really been hoping something like this would come along in Tennessee, because we’ve heard countless stories of kids in other states who were having 300-400 seizures a day being able to come off of seizure medications altogether and still only have a small handful of seizures a week! It’s really difficult to know a ton about Pearl’s development because she is on so many extremely potent seizure medications. We’re really hoping to get her in on this study to see if she, too, could come off of these drugs that have such harsh side effects and onto something that could be easier on her body. Yes, I realize there are differing viewpoints on medical marijuana but whatever your perspective, God’s modus operandi always seems to be taking that which we have abused, throwing a bit of redemption in the mix, and making it blossom! As of her last neurologist appointment, there is no news of the study getting underway. Hopefully, we will know something soon. Honestly, I’m a bit concerned that the politics and economics surrounding the pharmaceutical industry may hinder the research in TN before it gets far enough along to benefit Pearl, but since moving to a new state isn’t really in the cards for us, we’re hoping it’ll come together soon.
The older kids are doing really well, too. Brennan started homeschooling last fall, and now that Abbey is done with her preschool program, she’ll be joining him at the coffee table this year to begin her schooling as well. They both really excel at school, and seem to enjoy being able to do it at home. If left to their own devices, I suspect Brennan would spend his school days reading books and Abbey working on art projects (also known as coloring books). They’ve both grown so much in the last couple of years. It’s crazy to think that Pearl is almost the same age that Abbey was when we first received her diagnosis.
They’re all so blessed to have each other as siblings. Pearl couldn’t ask for more gentle and loving siblings, and they couldn’t have asked for a younger sister who could’ve taught them in the way that she has. Brennan still walks in the living room everyone morning and trumps, “Good morning, Pearl,” in a way that makes you wonder if he’s still expecting she’ll return the greeting. It all comes together to create a really beautiful dynamic in our home. Ruth and I cut eyes and grin at each other many times a day, making sure that the other is privy to the sweetness that is our living room. Though we weren’t really sure how it was going to pan out when we included them in so many hard discussions early on in Pearl’s diagnosis, I’m really grateful we did. I think so much of how they view life today has to do with how much they understand and process suffering and difficulty in light of God’s goodness. He’s been so good to us in this realm.
And I still don’t know how Ruth manages to continue juggling everything on her plate. She’s always a bright light and brings so much levity to our home, all the while somehow keeping the whole machine operating. Between caring for the kids, homeschooling, and managing the ecosystem that keeps The Good Ship Pearl afloat, she’s got her hands full. Trying to navigate the waters of in-home health care and equipment providers is enough to make the sanest of folks lose their mind, but we’ve both started finding ways to catch our breath more than we used to.
Many of our friends have faded from our lives over the last year, and a few new friends have come along side of us as of late. I think probably we all were prepared for a really quick, really rich, and really meaningful life with Pearl. None of us wanted to miss a moment when we thought the moments would be so few and yet, none of us were prepared for the long haul that we prayed for! Sometimes it gets overwhelming, and sometimes we all get exhausted with heavy conversations. It’s quite understandable that people can only be so heavily involved for so many months and we’re grateful for the fresh wind that new friends have brought into our lives. And maybe we’ve learned not to make every conversation about living in HeavyTown, too.
Yes, I realize I don’t write much anymore. If you’re itching for more frequent updates or photos, I do still use Twitter. If you’re not on Twitter, but still want to take a peak at more recent photos, you can still click over to twitter.com/ebrown_photo. There was a season when I had a great deal to share and a great deal of time to share it in, but these days I seem to be filling that time working or looking for work, and there’s not really much new to share. We don’t really have too many emergencies, and though we still celebrate Cupcake Friday, we don’t still sit around slack-jawed, watching the calendar fill up with red x’s. We’ve very much settled into a way of life. It’s a somewhat mundane way of life that is substantially different than most families, but we’ve learned to love it and do it fairly well.
So far this year, I’ve travelled for only about 3 weeks. Aside from that, I’ve somehow been able to squeeze out a living with photography here in Nashville. Many months we’re scratching our heads wondering if we’ll pull it off, but during this season of life, it seems to be the best decision if it means I’m around and able to help at home. I may end up trying to track down a fall tour though, as photography seems to have slowed beyond a sustainable threshold this summer.
Last year on Pearl’s first birthday, it seemed quite fitting to invite our entire community to a big celebration. This year it seems quite fitting to slip out of town with just the 5 of us, and spend a night away at a water park. It’ll do the older kids good to cut loose for a day or two, get sunburned, rent a hotel movie, and maybe even eat hotel waffles! We’re all really looking forward to it, and grateful for the gifts that have made it possible for us to go. It should be a great time!
I don’t know when I’ll write here again, but as always, thanks for checking in… Sorry it’s been so long.
Sorry, 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.
(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.