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.